20th December: Closing In
The vomiting and lack of appetite have got worse. I can’t keep any food or water down. I’m heading to hospital in the morning so will try get this dealt with there. I feel like rubbish and am dropped at the doors. I’m meant to be in for a routine blood test before the last Chemo session tomorrow however I soon realise as I step out of the lift I’m in for a lot more. The room spins and I make it to reception stopped by my nutritionist on route I have to find a seat and take in nothing she says to me. I get up and settle in the day area hoping all would settle once I was sat down. One of the nurses comes to see me and starts getting me ready for taking blood. The room closes in my head is light but I can’t hold it up. I get carried \ ushered to a bed and gradually come round. Every doctor available sees me. They all ask if the is anything else unusual, as far as I’m concerned it is all to do with lack of food and water. The only thing I can find for the doctors is a small spot on my left leg; it looks like an insect bite or in growing hair, nothing to be worried about. I am booked into isolation.
The next day I take a look at my leg. It know looks like I have had a football kicked at me as hard as possible and I have a huge red patch round what is now a black scab. What the hell is this?? I’m put on every antibiotic they can get hold of. I’m on a set of 3 drips for 24 hours a day. 1 drip is annoying but 3 is an never-ending beeping. I am sent for various scans to determine the depth and severity of the infection.
Day 3; The rash and black spot have grown again and covers most my thigh. A surgical consultant visits me. He scares the bejesus of me, he starts of by saying “if this infection reaches the muscle it would be a MRSA”. Where had it reached… Luckily not the muscle yet. If it does reach the muscle with the rate it is spreading they may have to consider removing the leg to stop the spread.. Anyway that’s not worth worrying about, as it is the antibiotics have started to put the infection into retreat. The consultant comes back and takes a sample from my leg, after this it is put into a dressing and I don’t see the wound again for a few days. All I know is after he is finished the pain is excruciating. I’m put on a heavy dose of morphine, after this I have no idea where I am and spend most of time talking rubbish.
Christmas Eve to New Year: Happy ?
Still talking rubbish, think I’m in a ski resort in Austria, then think I’m on a train? Christmas day while slightly more conscious of my surroundings still out of it. Christmas postponed. Boxing day to New Year I start to recover but slowly. I spend most of the days sleeping still under heavy painkillers. It goes down as the quietest Christmas and New Year ever, I’m not sure I ever realised it was even New Year. More to celebrate after I’m out
Thursday 20 December 2007
Wednesday 19 December 2007
Story so far…
On the 6th October 2007 Robbie was diagnosed with Leukaemia. He resolved to fight this disease and come out of it for the better. Besides I’m young fit, healthy if anyone can beat this I can.
The initial few weeks bring a shock to the system, both in terms of what I’m in for drugs, tubes; routines, hospital food and how different people deal with disease. The first round of Chemo does not cause much of an issue. I eventually lose my hair, but manage to keep watching OB’s throughout most of the treatment. If this is all I have to put up with its all ok I can handle this.
I did have one problem during the 1st phase that carried through to phase 2 of the treatment… my wisdom tooth was swelling up, this ended up causing far more problems than you would expect. After an operation to sort out the second round of Chemo started while I still had an infection. The result was cold sweats, temperatures around 40 c and very rough. While the infections gradually reduced the Chemo was still hard, vomiting at least 3 times a day and tried every anti-sickness drug available with no effect. Eventually things calm down enough for the doctors to let me home on the 11th December. Last Chemo is on the 21st December, then I’ll be free for Christmas at home.
The initial few weeks bring a shock to the system, both in terms of what I’m in for drugs, tubes; routines, hospital food and how different people deal with disease. The first round of Chemo does not cause much of an issue. I eventually lose my hair, but manage to keep watching OB’s throughout most of the treatment. If this is all I have to put up with its all ok I can handle this.
I did have one problem during the 1st phase that carried through to phase 2 of the treatment… my wisdom tooth was swelling up, this ended up causing far more problems than you would expect. After an operation to sort out the second round of Chemo started while I still had an infection. The result was cold sweats, temperatures around 40 c and very rough. While the infections gradually reduced the Chemo was still hard, vomiting at least 3 times a day and tried every anti-sickness drug available with no effect. Eventually things calm down enough for the doctors to let me home on the 11th December. Last Chemo is on the 21st December, then I’ll be free for Christmas at home.
Wednesday 12 December 2007
What week\ What Day??
The is no point in detailing what has gone on in the last 2 weeks. Suffice to say its been difficult. The chemotherapy is taking its toll. Its now routine to be ill several times a day, appetite has gone completely partly in fear of the food been brought up again. This is not helped by the standard of hospital food. I am better of eating little and often. Each day would bring different challengers, different drugs, different nurses, different patients on the ward with different habits, some nights you would sleep a little, some nights you would barely sleep at all.
Doctors change over during these 2 weeks. All the junior doctors who have treated me since diagnoses are moving on. In practice it is the junior doctors who deal with you most day to day the consultants make decisions on your treatment and the junior doctors carry it out. I knew all of these very well, it will take the new doctors quite awhile to build up the trust that these doctors had earned.
The sickness I can deal with, however the tiredness is the problem. I can't remember when the last good nights sleep I've had. You can't catch up during the day. You nerve feel right, this is not helped by blood counts dropping with Chemo and the lack of protein I'm eating.
While I've not been given the all clear from all infections I was released home on Tuesday 11th December. I'm still incredibly tired (hence a fairly short entry for 2 weeks). Most my time is spent sleeping and visitors are limited. I can just about do something for half an hour then need to lie down again.
I'm so happy to be at home, my chances of getting rest are a lot higher. Also at home I would stand less chance if picking up infection. I'm due back for blood transfusion, chemo and lumber punture. The blood may make me feel more awake. Until then I need to try get some decent food down.
Also thank you to Bristol Rugby and Gloucester Rugby for providing signed shirts (inc a Eng shirt). Which are to be auctioned by CLIC Sargent on
http://stores.ebay.co.uk/CLIC-Sargent-Shop
Please take a look and consider as Christmas presents for friends, family or yourself. More money raised the better.
Thanks for your support.
Robbie
Doctors change over during these 2 weeks. All the junior doctors who have treated me since diagnoses are moving on. In practice it is the junior doctors who deal with you most day to day the consultants make decisions on your treatment and the junior doctors carry it out. I knew all of these very well, it will take the new doctors quite awhile to build up the trust that these doctors had earned.
The sickness I can deal with, however the tiredness is the problem. I can't remember when the last good nights sleep I've had. You can't catch up during the day. You nerve feel right, this is not helped by blood counts dropping with Chemo and the lack of protein I'm eating.
While I've not been given the all clear from all infections I was released home on Tuesday 11th December. I'm still incredibly tired (hence a fairly short entry for 2 weeks). Most my time is spent sleeping and visitors are limited. I can just about do something for half an hour then need to lie down again.
I'm so happy to be at home, my chances of getting rest are a lot higher. Also at home I would stand less chance if picking up infection. I'm due back for blood transfusion, chemo and lumber punture. The blood may make me feel more awake. Until then I need to try get some decent food down.
Also thank you to Bristol Rugby and Gloucester Rugby for providing signed shirts (inc a Eng shirt). Which are to be auctioned by CLIC Sargent on
http://stores.ebay.co.uk/CLIC-Sargent-Shop
Please take a look and consider as Christmas presents for friends, family or yourself. More money raised the better.
Thanks for your support.
Robbie
Tuesday 27 November 2007
New Chemo
Friday brings a surprise first thing, they are moving Chemo forward to today, this is good news as it gives the Leakeamia little chance to recover. The type I have requires you to stay on top of it otherwise it will be back stronger than before. This is despite the fact the infections are still ongoing, and the Chemo will destroy any remainder of my immune system. This also has a knock on effect that I won't be coming in at Christmas as I should finish a few days before.
As before getting the Chemo therpy was not a problem, at most I'm hooked up for an hour then done. However this round of treatment (a different type of treatment than before) knocks me sideways. Give it 1 hour and I'm out for the count, head pounds. This is not helped my the family with an 11month old next door screaming. I manage to fall asleep but am woken later by a nurse, before she has a chance to set up I have to leg it to the toilet and throw up my entire dinner. I can think of so many other places I'd rather be but I'm stuck hugging a communal hospital toilet for half an hour. 1 hour after this I go into a fever. I had hoped that the release home was a sign I would be out soon.. Hopes are dashed. However I get a visit from both Gareth (OB's) and Alex Brown and Ben Strunham, the later bring copies of the Stade Francais game. Ben and Alex leave quite quickly and I eventually have to ask Gareth to leave because I'm to tired.
Sat morning I still feel rough, Its only the nurses making me get up to be weighed that cause me to get up. I'm now 67k.. I've lost 25% of my body weight. They had not given me any anti-sickness on the first round, will be taking it this time. Slight destraction of Wales vs SA playing rugby in afternoon, all quite predicatable in the end. Chemo is taking toll after game I'm asleep again by the final whistle.
Iain brought in a copy of the evening post, the was a article on myself and the old bristolians going to Dubai. Has photo Gav took in the hospital last week. Also I have been told its on the bristol rugby website (http://www.bristolrugby.co.uk/25_4833.php) and scrum.com (http://www.scrum.com/39_49342.php). This is great coverage for CLIC-Sargent. And also a massive thank you to those at Bristol & Gloucester for getting signed shirts for us. The will be a charity auction on the CLIC website for you to do some christmas shopping.
www.stores.ebay.co.uk/CLIC-Sargent-shop
Promotion over.. but please do have a look.
The Chemo continues until Monday, I had been hoping that I could be out of here on Wednesday, hopes dashed again. Spend most of Monday, Tuesday not eating but been ill and sleeping. Its times like this you really don't want to see anyone but also need someone just to come in and give you a quick perk up and leave.
As before getting the Chemo therpy was not a problem, at most I'm hooked up for an hour then done. However this round of treatment (a different type of treatment than before) knocks me sideways. Give it 1 hour and I'm out for the count, head pounds. This is not helped my the family with an 11month old next door screaming. I manage to fall asleep but am woken later by a nurse, before she has a chance to set up I have to leg it to the toilet and throw up my entire dinner. I can think of so many other places I'd rather be but I'm stuck hugging a communal hospital toilet for half an hour. 1 hour after this I go into a fever. I had hoped that the release home was a sign I would be out soon.. Hopes are dashed. However I get a visit from both Gareth (OB's) and Alex Brown and Ben Strunham, the later bring copies of the Stade Francais game. Ben and Alex leave quite quickly and I eventually have to ask Gareth to leave because I'm to tired.
Sat morning I still feel rough, Its only the nurses making me get up to be weighed that cause me to get up. I'm now 67k.. I've lost 25% of my body weight. They had not given me any anti-sickness on the first round, will be taking it this time. Slight destraction of Wales vs SA playing rugby in afternoon, all quite predicatable in the end. Chemo is taking toll after game I'm asleep again by the final whistle.
Iain brought in a copy of the evening post, the was a article on myself and the old bristolians going to Dubai. Has photo Gav took in the hospital last week. Also I have been told its on the bristol rugby website (http://www.bristolrugby.co.uk/25_4833.php) and scrum.com (http://www.scrum.com/39_49342.php). This is great coverage for CLIC-Sargent. And also a massive thank you to those at Bristol & Gloucester for getting signed shirts for us. The will be a charity auction on the CLIC website for you to do some christmas shopping.
www.stores.ebay.co.uk/CLIC-Sargent-shop
Promotion over.. but please do have a look.
The Chemo continues until Monday, I had been hoping that I could be out of here on Wednesday, hopes dashed again. Spend most of Monday, Tuesday not eating but been ill and sleeping. Its times like this you really don't want to see anyone but also need someone just to come in and give you a quick perk up and leave.
Sunday 25 November 2007
Back To A Familiarity (Wed - Thurs) Despite phone been out of battery Iain still manages to find me again. He must have been getting friendly with hotel switchboard staff tracking me in the last few days. I’m back in the same bed, this is quite a bonus. I must have been in favour with the nurses. It’s the lazy boy bed of the ward. If your in bed and visitrs arrive at the press of a button your sat up. The other beds you have to mess around with metal slates, a bit like folding deckchairs.. I also have a DVD player. Iain has brought me some connection with the outside world as I borrow his phone with my sim card, unfortunately I can’t access my numbers so am getting messages but not knowing who or when they are from. I have some fresh clothes!! I can feel clean.
One of the messages I get is from Gav who works for CLIC-Sargent he pop’s in, he has the tour shirts for Dubai, they are brilliant, he also passes on media pack from CLIC-Sargent for use in a interview I’m doing for Bristol. Pose for a cheesy photo for CLIC-Sargent with zombie dressing around a swollen neck.. if I was not smiling I could audition for the next Shaun Of The Dead. Due to these complications Chemotherapy will be delayed until Monday. I get the schedule of treatment. It works as 4 days on 4 days off. That does not include the I T injections which tends to be weekly. I’m going to be in the BRI a lot. Other consequences of this treatment pattern is that the last dosage is Christmas day and would be a double dose. They have booked me in as Father Christmas and are expecting an appropriate outfit.
While glad to be back I’d forgotten the problems of sharing a ward with 3 others, all it takes is 1 person to keep everyone awake. At 1130 in a ward full of sick people you would think people would turn volume down, or turn off. No, Once this clears I still can’t sleep & I’m needing the toilet every 15 min (you may think a little bit to much information but all will become clear in a second). After I get back after one of these trips I can hear faint jungle noises… I’m questioning my sanity now (“what year is it??) the jungle noise fades out and is replaced by a babbling brook no wonder I’m going every 15 min with this next to me…. Not happy don’t sleep much.
Thursday brings bag after bag of antibiotic, temperature is still fluctuating I am able to eat solid foods but appetite for hospital food is not that great. I was due to receive blood today but my temperatures have been far too unstable.
I am on a brief break from hospital (2 hours out, its actually the 1st Dec, I am still been kept in hospital most of the time but am ok, I will attempt to keep updates coming out but they may be a little delayed)
One of the messages I get is from Gav who works for CLIC-Sargent he pop’s in, he has the tour shirts for Dubai, they are brilliant, he also passes on media pack from CLIC-Sargent for use in a interview I’m doing for Bristol. Pose for a cheesy photo for CLIC-Sargent with zombie dressing around a swollen neck.. if I was not smiling I could audition for the next Shaun Of The Dead. Due to these complications Chemotherapy will be delayed until Monday. I get the schedule of treatment. It works as 4 days on 4 days off. That does not include the I T injections which tends to be weekly. I’m going to be in the BRI a lot. Other consequences of this treatment pattern is that the last dosage is Christmas day and would be a double dose. They have booked me in as Father Christmas and are expecting an appropriate outfit.
While glad to be back I’d forgotten the problems of sharing a ward with 3 others, all it takes is 1 person to keep everyone awake. At 1130 in a ward full of sick people you would think people would turn volume down, or turn off. No, Once this clears I still can’t sleep & I’m needing the toilet every 15 min (you may think a little bit to much information but all will become clear in a second). After I get back after one of these trips I can hear faint jungle noises… I’m questioning my sanity now (“what year is it??) the jungle noise fades out and is replaced by a babbling brook no wonder I’m going every 15 min with this next to me…. Not happy don’t sleep much.
Thursday brings bag after bag of antibiotic, temperature is still fluctuating I am able to eat solid foods but appetite for hospital food is not that great. I was due to receive blood today but my temperatures have been far too unstable.
I am on a brief break from hospital (2 hours out, its actually the 1st Dec, I am still been kept in hospital most of the time but am ok, I will attempt to keep updates coming out but they may be a little delayed)
Admission: (Sun-Tues)
Temperatures are high, end up back in hospital. They are trying to find the source of the infections, I now have a huge double chin so would have thought it would be quite obvious by now. I’m booked in for the day to monitor how the infections go, temperatures are all in the high 8’s. The thing is with infections you are never just in for 1 day… Temperature peaks at 39.3 in the evening and have a night of cold sweats followed later by burning up 20 min later.
Monday brings no respite, antibiotics start at 6:00am but the infection, as soon this is finished I’m taken to the dental hospital no time to shower or anything. Annoy all others in the queues by stating my name at reception and her saying wait there and me then been greeted by 3 dentists and lead away.
I see yet another doctor who looks at my file & whats happened previously. See then turns to me like it’s the first time I’ve been through this, “you need your Wisdom tooth out”. Yes, I’ve been saying that for weeks, so shy was it not taken out last Thursday… she replies I just need to speak to my boss. A surgeon eventually appears and just takes one look the xray and one look at me, “we operate this afternoon, wisdom tooth and drain to be put in,” then wonders off. This is explained to me after as been put under general atheistic to have both the wisdom tooth taken out and a small metal drain into my neck. I try to get them to admit the whole procedure on the previous Thursday was a waste of time, the dentist dealing with me clearly knows this so keeps changing the subject. It’s a bit of a told you so.. but far more of a why did I not push them harder and get a more senior dentist than the 2 dealing with me. Lesson learnt don’t back down to theses dentist they know their fields etc but they don’t know your body.
The preparation for surgery may be complicated as they do not know if my jaw will open under atheistic, these not only could cause trouble getting oxygen in but also access to the tooth itself. Before I know if I’m shuffled around wards and waiting to be taken into surgery. They give you a very attractive hospital gown and for some reason green stockings with holes in, no one could explain why this was to me. General Atheistic is easy one minute your imagining a beach and counting to 10 next you be disappointed to know you don’t wake up on the beach but in another part of the hospital. I’m transferred to a post op high dependency ward due to the leukaemia, this does not mean car crash victims or others in a bad way, it actually means the extreme elderly who can’ look after themselves. I’m stuck here as nurses on Ward 62 have no experience of dealing with drains. Everyone else here is 80ish. I soon find out I’m the only one not to have lived through WW2. Been in a ward like this brings a few surprises. 1st of all after one bout of my antibiotics I’m asked “what year is it? Then who is the prime minister?” I questioned if it was necessary to ask me those questions and apparently they are standard (I did not get asked again) However 1 other patient found a novel way round it.. when asked the prime minister he answered “well that depends if we are in England or Austria?) Nurses here do there best, this ward is not as clean or as smoothly running as ward 62. I’m actually looking forward to getting back to ward 62.
Drain comes out Tues afternoon, should be able to get back to ward 62 tomorrow.
Monday brings no respite, antibiotics start at 6:00am but the infection, as soon this is finished I’m taken to the dental hospital no time to shower or anything. Annoy all others in the queues by stating my name at reception and her saying wait there and me then been greeted by 3 dentists and lead away.
I see yet another doctor who looks at my file & whats happened previously. See then turns to me like it’s the first time I’ve been through this, “you need your Wisdom tooth out”. Yes, I’ve been saying that for weeks, so shy was it not taken out last Thursday… she replies I just need to speak to my boss. A surgeon eventually appears and just takes one look the xray and one look at me, “we operate this afternoon, wisdom tooth and drain to be put in,” then wonders off. This is explained to me after as been put under general atheistic to have both the wisdom tooth taken out and a small metal drain into my neck. I try to get them to admit the whole procedure on the previous Thursday was a waste of time, the dentist dealing with me clearly knows this so keeps changing the subject. It’s a bit of a told you so.. but far more of a why did I not push them harder and get a more senior dentist than the 2 dealing with me. Lesson learnt don’t back down to theses dentist they know their fields etc but they don’t know your body.
The preparation for surgery may be complicated as they do not know if my jaw will open under atheistic, these not only could cause trouble getting oxygen in but also access to the tooth itself. Before I know if I’m shuffled around wards and waiting to be taken into surgery. They give you a very attractive hospital gown and for some reason green stockings with holes in, no one could explain why this was to me. General Atheistic is easy one minute your imagining a beach and counting to 10 next you be disappointed to know you don’t wake up on the beach but in another part of the hospital. I’m transferred to a post op high dependency ward due to the leukaemia, this does not mean car crash victims or others in a bad way, it actually means the extreme elderly who can’ look after themselves. I’m stuck here as nurses on Ward 62 have no experience of dealing with drains. Everyone else here is 80ish. I soon find out I’m the only one not to have lived through WW2. Been in a ward like this brings a few surprises. 1st of all after one bout of my antibiotics I’m asked “what year is it? Then who is the prime minister?” I questioned if it was necessary to ask me those questions and apparently they are standard (I did not get asked again) However 1 other patient found a novel way round it.. when asked the prime minister he answered “well that depends if we are in England or Austria?) Nurses here do there best, this ward is not as clean or as smoothly running as ward 62. I’m actually looking forward to getting back to ward 62.
Drain comes out Tues afternoon, should be able to get back to ward 62 tomorrow.
Saturday 17 November 2007
Liquid Lunch
I have another rough day on Wednesday, I am prescribed some very strong painkillers to deal with. These take effect by the evening and I'm able to sleep. All other drugs I'm on are stopped.
Thursday I am booked into get teeth sorted out. I go in, it should be a fairly quick process. However the dentists get themselves into a fuss regarding the drugs I have been on, how this should have been done before I started chemotherapy (it couldn't because all my blood counts were so low). They end up taking out one of my top teeth.. this was not what I was expecting but after questioning I'm assured it will stop the swelling in my mouth.
I manage just to eat solids for Thursday and Friday but the swelling increases on Saturday, I'm now on a liquid diet. I can't even manage to eat a small amount of bread. With the gap in Chemo I actually have my taste back as well... Is really annoying I'll be able to taste my food for a window of a few days but I am limited to soup, milkshakes and smoothies. I'm really not sure they have fixed the issue in the dental hospital. If it does not clear up next week I'll be really annoyed with them as the will not be another chance to get teeth seen to for at least 4 weeks as blood counts will be to low.
Friday was the start of treatment again. I was in for lumber punctures these go smoothly but once they are done you are stuck on your back for 2 hours. I learn a little Spanish while been regularly checked up on by the nurses. My temperature is fluctuating rapidly it goes from 36.5 to 38 within these 2 hours. I'm kept in for longer to monitor the situation, temperature drops back down to 37.5. I'm let home but only just. I need to monitor my temperature half hourly at home. I will be in hospital again if it hits 38. Extra blood samples are taken to check for infection, in particularly they check the my permanent lines for infection.
Bristol rugby pop into see me on Saturday morning, they bring me a Bristol shirt with initials on it. They also bring me some dvd's of Bristol games. Apparently quite a few people have been asking how I'm doing at the club as well, they would like to put an update on the website. We take some very cheesy photos to go with this. Also can promote CLIC (National Blood Service are a nightmare to deal in terms of arranging promotions with so have decided to help CLIC out with any coverage that I get). Its quite a good lift for a Saturday morning.
Temperatures are still erratic on Saturday, I don't risk going to watch any OB's games. I get a phone call in the evening and a infection has been found in my line. I need to now go in on Sunday to start antibiotic treatments. Its strange.. my blood counts are the highest they have been since they have been measured, I'd taken myself of all painkillers and apart from issues with my jaw am feeling the best I have for weeks. Hopefully I'll be in and out for the antibiotics, but if temperatures continue to fluctuate I may be kept in.... Fingers crossed I'm not.
Thursday I am booked into get teeth sorted out. I go in, it should be a fairly quick process. However the dentists get themselves into a fuss regarding the drugs I have been on, how this should have been done before I started chemotherapy (it couldn't because all my blood counts were so low). They end up taking out one of my top teeth.. this was not what I was expecting but after questioning I'm assured it will stop the swelling in my mouth.
I manage just to eat solids for Thursday and Friday but the swelling increases on Saturday, I'm now on a liquid diet. I can't even manage to eat a small amount of bread. With the gap in Chemo I actually have my taste back as well... Is really annoying I'll be able to taste my food for a window of a few days but I am limited to soup, milkshakes and smoothies. I'm really not sure they have fixed the issue in the dental hospital. If it does not clear up next week I'll be really annoyed with them as the will not be another chance to get teeth seen to for at least 4 weeks as blood counts will be to low.
Friday was the start of treatment again. I was in for lumber punctures these go smoothly but once they are done you are stuck on your back for 2 hours. I learn a little Spanish while been regularly checked up on by the nurses. My temperature is fluctuating rapidly it goes from 36.5 to 38 within these 2 hours. I'm kept in for longer to monitor the situation, temperature drops back down to 37.5. I'm let home but only just. I need to monitor my temperature half hourly at home. I will be in hospital again if it hits 38. Extra blood samples are taken to check for infection, in particularly they check the my permanent lines for infection.
Bristol rugby pop into see me on Saturday morning, they bring me a Bristol shirt with initials on it. They also bring me some dvd's of Bristol games. Apparently quite a few people have been asking how I'm doing at the club as well, they would like to put an update on the website. We take some very cheesy photos to go with this. Also can promote CLIC (National Blood Service are a nightmare to deal in terms of arranging promotions with so have decided to help CLIC out with any coverage that I get). Its quite a good lift for a Saturday morning.
Temperatures are still erratic on Saturday, I don't risk going to watch any OB's games. I get a phone call in the evening and a infection has been found in my line. I need to now go in on Sunday to start antibiotic treatments. Its strange.. my blood counts are the highest they have been since they have been measured, I'd taken myself of all painkillers and apart from issues with my jaw am feeling the best I have for weeks. Hopefully I'll be in and out for the antibiotics, but if temperatures continue to fluctuate I may be kept in.... Fingers crossed I'm not.
Tuesday 13 November 2007
Can't find you...
Sunday night was rough.. I was in a lot of pain, I could feel every joint and despite been completely exhausted could not get to sleep. However once I was asleep I slept extremely heavily and woke up feeling much better..
In the morning I'm actually feeling good. I'm due in hospital around lunch time. Once I'm in I see various doctors and talk through my problems and various tests are done. I'm asked by the doctors if I've been boozing... I have not drunk for 2 months now, its more likely my liver is having withdrawal symptoms from booze. Before the treatment I would not have taken Aspirin for a headache my body is just struggling with the number of drugs been put through. They need to reduce the number of supplemental drugs I'm taking to reduce the impact on my liver. However this means coming of some of the antibiotics and anti-fungal drugs. This brings increased danger of infection. My immune system has so far proved to be strong so to be honest I'm fairly happy to come of some of these drugs.
Results of the bone marrow test come back as well, I was not expecting this until later in the week. The Chemotherapy is doing its job. The sample that they took had no trace of the leukaemia cells... Great news but before you get carried away.. They could not find many cells at all. The Chemotherapy kills both decent cells and bad they had very few cells to count so they can't find any diseased cells in a small sample. Its still good news that the treatment is doing what is expected, if the had been a trace in this sample it would have been a blow.
The week that I have coming up is an easy week in terms of treatment, the doctors want to see if my body starts to recover naturally after the treatment. After the weekend my blood counts are up without any top ups from the hospital. This is good news. On Wednesday I will be undergoing a lot further tests to see how I'm doing. Provided the results of these tests are ok I should be getting my wisdom teeth out Wednesday.
I also see my main consultant on Monday, he is happy with my progress the have been no real negative results so signs are still looking good. Lots of reasons to be happy.
Cheers for all of your support.
Robbie
In the morning I'm actually feeling good. I'm due in hospital around lunch time. Once I'm in I see various doctors and talk through my problems and various tests are done. I'm asked by the doctors if I've been boozing... I have not drunk for 2 months now, its more likely my liver is having withdrawal symptoms from booze. Before the treatment I would not have taken Aspirin for a headache my body is just struggling with the number of drugs been put through. They need to reduce the number of supplemental drugs I'm taking to reduce the impact on my liver. However this means coming of some of the antibiotics and anti-fungal drugs. This brings increased danger of infection. My immune system has so far proved to be strong so to be honest I'm fairly happy to come of some of these drugs.
Results of the bone marrow test come back as well, I was not expecting this until later in the week. The Chemotherapy is doing its job. The sample that they took had no trace of the leukaemia cells... Great news but before you get carried away.. They could not find many cells at all. The Chemotherapy kills both decent cells and bad they had very few cells to count so they can't find any diseased cells in a small sample. Its still good news that the treatment is doing what is expected, if the had been a trace in this sample it would have been a blow.
The week that I have coming up is an easy week in terms of treatment, the doctors want to see if my body starts to recover naturally after the treatment. After the weekend my blood counts are up without any top ups from the hospital. This is good news. On Wednesday I will be undergoing a lot further tests to see how I'm doing. Provided the results of these tests are ok I should be getting my wisdom teeth out Wednesday.
I also see my main consultant on Monday, he is happy with my progress the have been no real negative results so signs are still looking good. Lots of reasons to be happy.
Cheers for all of your support.
Robbie
Sunday 11 November 2007
Asleep, Dazed, Confused & Uplifting
I have chosen to try and write my blog twice a week, so please do not worry if nothing appears for a day or so. (thanks to those who expressed concern as the was a bit of a break). I would try and post on a regular day but can't guarantee how I will feel or if I'll have time.
Its been a extremely tough week of treatment. The list of drugs in my system is now silly.
- Ciprofloxin, (antibiotic)
- Prednisolene (steroids)
- Randindone (anti acid)
- Allopurinal (side effects)
- Co-Trimoxazole (??)
- Meltronizyde (antibiotics)
- Ambisome (anti-fungal)
- L-Asparaginase (Chemo)
- VCR (Chemo)
- DNR (Chemo)
- Lumber Punctures (Chemo)
This is while refusing to take any of the anti sickness tablets. This is another reason why not to update the blog on a daily basis as it would turn into a drugs and treatment top trumps.
All of the treatment has taken its toll on me. I have so little energy to do anything. Thursday I have a full day in and out of hospital. I have to go to the dental hospital to have tooth looked at, then have an afternoon of treatment on ward 62. The dental hospital is crowded and one of the last places I want to be. I end up finding the seat with the most room and spreading myself as far and wide as possible so no one trys to sit next to me. It does not really work. The dentist is quite efficient and I am in xrayed seen to and advised that my wisdom teeth may need removed. The gums have swelled up around them causing the pain in my mouth and ear. Some temporary work is done to relieve pressure and this helps relieve the pain in my ears. Some kind of a result. If my blood counts are good next week the may be a window to get the teeth removed. Could be a good result. After the afternoon I'm completely exhausted for the day. This carrys through to Friday. I have so little energy even moving to drink is an effort.
I have to admit at this point I'm half asleep, dazed and confused to what is going on. This state of almost complete inability is not natural. I am as weak as a kitten, from someone who is used to strapping up most injuries and playing on feel completely helpless. This is downheartning. However at these points funny things tend to happen. I have managed to log on email from my bed and at the point when I'm starting to feel sorry for myself I get a message from Milk Link. Followed by the delivery of several get well cards. This is completely unexpected and provides me with all the lift I need. I cannot thank those who keep sending me messages enough as they do make all of the difference in getting me through this.
The doctors I think have seen some sense, they know the European Cup is on this weekend.. they give me the entire weekend off as I think they know I'll be a nightmare if they try and keep me in. Also will allow me to go watch OB's 2's at home, if I feel up for it.
A few friends pop round on Friday night to watch Gloucester beat Ulster, is a good game and a very welcome distraction. Nose bleeds have started now, trouble is with the low blood counts once they start the blood does not clot.. You end up with a almost constant nose bleed. That combined with the increased sense of smell means you also get a fairly unpleasant smell most of the time.
My Dad arranges for my car to be advertised for sale, I won't need a car for awhile. Surprisingly it is sold to the first person who looks at it. Get full asking price, this is unexpected and great news. Another good lift.
I make it up for the OB's game, under strict instructions to wrap up warm, sit down, drink lots and don't shout to much. The opposition are incredibly week. Records are made to be broken and I think the final score is 74 - 3. I think that this beats my record when I was captain. Is a entertaining game although a bit of a piss take. After the game I take a few photos of the team. They get me involved in a few of them and I manage to demonstrate how weak I really am at the end I go to get up and if it was not for leaning on someone else I would have ended up face down in the mud. I'm not sure people at the club realised what condition I was in.. they might do now.
Saturday night I manage to break a 4 week record for sleep.. I manage 4 hours!! This is good.. However as I'm not used to sleeping this long I'm then awake. Awake for rest of the night.
Sunday I am a bit of a mess. I have no energy again, can't do much at all. Make it out of bed for 1:00 to watch Bristol vs Cardiff. While I am struggling Amy & Alex pop round and give me a boost. Amy's work mates have been reading the blog. Some of them have been through similar and knowing that they recognise the problems etc is uplifting. I am on and off asleep for rest of day but feel fairly good in myself that the blog is been used by others that I don't even know and they are to some extent enjoying it.
My parents have been looking after me this week, I must apologise for occasionally been impatient and not very helpful.. This is no reflection on the help you have been to me in the week but is just a side effect of tiredness and the drugs. I do appreciate everything that you do for me.
Also thank you all so much for supporting me through this keep the messages coming as I do read everyone and appreciate each message.
Cheers
Robbie
Wednesday 7 November 2007
Tastes like Chicken
Its now 28 days into phase 1 of the treatments. So far I have been in hospital everyday this week. This has taken a toll as have been half asleep all week. Have lost almost all taste now. Everything tastes like Chicken... however Chicken does not taste of anything either. Have taken to eating anything with different textures.
I have now had my first lumber puncture, and the bone marrow test. After this I end up having to spend most of rest of day on back to let Chemotherapy in the spine settle down. This stops me from sleeping much, wake up feeling fairly bad on Tuesday. I have now cut off my hair on completely so when I go through my list of symptoms I seem to get more sympathy than normal. The doctors and nurses are fantastic today. They can see I'm not feeling great and go out of their way for me. Hopefully some of the side effects can be treated making life a little more comfortable. In a situation where the main treatments are so long term any quick wins would more a massive moral boost. I am referred to a ear specialist on Wednesday hopefully get one of these sorted out. Also get given some further medication and painkillers to treat some of the other side effects.
I am been looked after well by Mum & Dad since Iain has gone away. I am feeling a little crowded, however this is partly down to been tired and the effect of the steroids. Dad has had a look at car and is helping me get it ready to sell. Would be fantastic if I can get it sorted while they are here as will save me meeting random people picking up infections. Going to advertise for £695 but will see what I get offered.
I see the ear specialist on Wednesday, I really hope that I can get this problem sorted. However it is decided that its probably a referred pain from my mouth. End up booked into seeing a dental specialist on Thursday. I suspect a tooth may need taken out, however will low immune system and hemoglobin this may not be possible until after treatment. I will have to wait and see what is said tomorrow.
After a heavy first half of the week, I am still tired on Wednesday morning, however the extra blood which I was given on Tuesday begins to kick in by lunch and things start to pick up again. Ups and downs are what I have to expect now. As long as the bone marrow test comes back positive then it is all going well whatever the food tastes like..
I have now had my first lumber puncture, and the bone marrow test. After this I end up having to spend most of rest of day on back to let Chemotherapy in the spine settle down. This stops me from sleeping much, wake up feeling fairly bad on Tuesday. I have now cut off my hair on completely so when I go through my list of symptoms I seem to get more sympathy than normal. The doctors and nurses are fantastic today. They can see I'm not feeling great and go out of their way for me. Hopefully some of the side effects can be treated making life a little more comfortable. In a situation where the main treatments are so long term any quick wins would more a massive moral boost. I am referred to a ear specialist on Wednesday hopefully get one of these sorted out. Also get given some further medication and painkillers to treat some of the other side effects.
I am been looked after well by Mum & Dad since Iain has gone away. I am feeling a little crowded, however this is partly down to been tired and the effect of the steroids. Dad has had a look at car and is helping me get it ready to sell. Would be fantastic if I can get it sorted while they are here as will save me meeting random people picking up infections. Going to advertise for £695 but will see what I get offered.
I see the ear specialist on Wednesday, I really hope that I can get this problem sorted. However it is decided that its probably a referred pain from my mouth. End up booked into seeing a dental specialist on Thursday. I suspect a tooth may need taken out, however will low immune system and hemoglobin this may not be possible until after treatment. I will have to wait and see what is said tomorrow.
After a heavy first half of the week, I am still tired on Wednesday morning, however the extra blood which I was given on Tuesday begins to kick in by lunch and things start to pick up again. Ups and downs are what I have to expect now. As long as the bone marrow test comes back positive then it is all going well whatever the food tastes like..
Saturday 3 November 2007
Hair Today... Gone Tomorrow?
Test results on Iain & Helen are back on Wednesday. Unfortunatly they do not have a match with me. This cuts down the potential options of treatment, however that is not to say it would have been the best option anyway. Transplants are very risky and it may be that further Chemotherpy would have been better option anyway. This makes no difference to the treatment that I will be having in the next 5 weeks regardless.
Next milestone happens next week. Bone marrow tests on Monday will let me know how the treatment has gone so far. Hopefully that will show the Leukeamia in retreat. Treatment then switchs over to a second type of Chemotherpy and other drugs. I will be phased of the Steroids which may mean sleeping might get back to normal. I'm sure the other drugs might give me some other issues but I'll deal with that when I get them.
In terms of side effects the treatment has been tougher this week, energy levels are extermely low and I have developed back spasms and pains which the doctors can't explain. These are quite severe but have seem to be clearing up. These symptoms do get to me a little on Friday morning... however in a timely manor I seem to get a volley of support from different people, quite surprisingly Matt Salter turns up with a rowing machine for me.. I'm still half asleep when he gets here. While it might be a week or so before I can use it, the support means a lot to me and motivation is back... Friday I start to recover from the heavy weeks treatment. Mum & Dad arrive Saturday morning, the rest on Friday does me good and am doing quite well on Saturday. Very glad as can get to head out and watch some rugby in good weather.
Lastly the challange of growing a mullet is coming to an end.. While its not coming out in clumps yet I very much doubt it will last the week. The winter hats are all ready for when this happens. Its been expected and another sign the treatment is doing a job..
Next milestone happens next week. Bone marrow tests on Monday will let me know how the treatment has gone so far. Hopefully that will show the Leukeamia in retreat. Treatment then switchs over to a second type of Chemotherpy and other drugs. I will be phased of the Steroids which may mean sleeping might get back to normal. I'm sure the other drugs might give me some other issues but I'll deal with that when I get them.
In terms of side effects the treatment has been tougher this week, energy levels are extermely low and I have developed back spasms and pains which the doctors can't explain. These are quite severe but have seem to be clearing up. These symptoms do get to me a little on Friday morning... however in a timely manor I seem to get a volley of support from different people, quite surprisingly Matt Salter turns up with a rowing machine for me.. I'm still half asleep when he gets here. While it might be a week or so before I can use it, the support means a lot to me and motivation is back... Friday I start to recover from the heavy weeks treatment. Mum & Dad arrive Saturday morning, the rest on Friday does me good and am doing quite well on Saturday. Very glad as can get to head out and watch some rugby in good weather.
Lastly the challange of growing a mullet is coming to an end.. While its not coming out in clumps yet I very much doubt it will last the week. The winter hats are all ready for when this happens. Its been expected and another sign the treatment is doing a job..
Tuesday 30 October 2007
Backrow Battles
Any illusions that I can breeze through the treatment are gone... I knew I had been lucky so far but the latest round has taken its toll. I had a new Chemotherapy on Saturday, I did not like it one bit. Went into a cold sweat mid way through the injections. This one was directly into muscles and gave me 2 dead legs to remind me of it after. Did not feel good for rest of evening. I missed Ronan's stag... although had plenty of photo updates and managed to implement a few fines and a no hands soup. I'm pretty gutted to be missing out on the banter, Saturday nights are going to be dull for awhile yet and I'm going to be such a lightweight when I get back on it. I will need to think of some ways to distract myself for the coming weekends.
Temperature is high. Risen above 37d for the first time, it continues to rise and I barely have the energy to move. I can't sleep but can't keep my eyes open, its a complete limbo. Gums have started bleeding (this is a normal side effect which I knew would come). It feels like I've been in a drunken brawl and come out second best.. Temperature keeps rising. You can feel the pressure of the drugs building in your system but the is very little you can do about it. However I manage to find a way of cheating my way out of it.. normally I never drink any caffeine but find that I can wake myself up for around 2 hours then sleep using it. Using this I manage to enjoy Bristol vs Llanelli then pass out. Temperature is now 37.8. I phone the hospital if it rises once more I will have to be admitted tonight and given antibiotics to get rid of any infection asap. Defiantly made right decision not to pop into Ronan's or Dirty's party.
While I may feel like crap... this is good. I've managed to get through 3 weeks of chemotherapy without feeling that bad. I've got momentum on my opposite number the treatment is hurting both me and the disease. My swollen jaw just reminds me that when I'm playing well the opposition always get a few punchs in as you disrupt and steal ball. I'm in for a fight but everytime I feel bad it is hurting the disease more. Seeing the fight in these terms makes it a lot easier for me to deal with.
Tempreture falls and manage to avoid hospital for the night. I am in tomorrow for more chemotherapy, wake up feeling a lot better. I get a full check over by a consultant in the hospital... I don't trust him. His favorite phrase is self-diagnoises. I think he is blagging and does not know what he is talking about, he has not told me anything useful anytime he has seen me.
I actually trust the junior doctors and nurses more than him. My consultant is not back from holiday yet, I'm still awaiting test results but the is no way I'm going to discuss them with the stand in consultant.
Temperature is high. Risen above 37d for the first time, it continues to rise and I barely have the energy to move. I can't sleep but can't keep my eyes open, its a complete limbo. Gums have started bleeding (this is a normal side effect which I knew would come). It feels like I've been in a drunken brawl and come out second best.. Temperature keeps rising. You can feel the pressure of the drugs building in your system but the is very little you can do about it. However I manage to find a way of cheating my way out of it.. normally I never drink any caffeine but find that I can wake myself up for around 2 hours then sleep using it. Using this I manage to enjoy Bristol vs Llanelli then pass out. Temperature is now 37.8. I phone the hospital if it rises once more I will have to be admitted tonight and given antibiotics to get rid of any infection asap. Defiantly made right decision not to pop into Ronan's or Dirty's party.
While I may feel like crap... this is good. I've managed to get through 3 weeks of chemotherapy without feeling that bad. I've got momentum on my opposite number the treatment is hurting both me and the disease. My swollen jaw just reminds me that when I'm playing well the opposition always get a few punchs in as you disrupt and steal ball. I'm in for a fight but everytime I feel bad it is hurting the disease more. Seeing the fight in these terms makes it a lot easier for me to deal with.
Tempreture falls and manage to avoid hospital for the night. I am in tomorrow for more chemotherapy, wake up feeling a lot better. I get a full check over by a consultant in the hospital... I don't trust him. His favorite phrase is self-diagnoises. I think he is blagging and does not know what he is talking about, he has not told me anything useful anytime he has seen me.
I actually trust the junior doctors and nurses more than him. My consultant is not back from holiday yet, I'm still awaiting test results but the is no way I'm going to discuss them with the stand in consultant.
Thursday 25 October 2007
Proud Of Friends \ Chemo Mullet
Its now 5:00 am on Friday morning. The drugs I am on have completely confused my body clock. I cannot sleep for more than 2 hours in a row. I know I will be knackered later but trying to sleep is futile so have decided to get up.
Yesterday I was taken back by my friends generosity... A group had got together and gone and got me a xbox 360... Its a unbelievable gift, one that will help me pass the time over the next few weeks. AJ popped it round on Wednesday night.. Thursday morning I put on a OB's tour shirt to head to hospital, I've never been so proud to put on a rugby shirt... a club and friends who do that bit extra for each other. I will owe more than a few beers to people when I'm through this.
Wibbles and Emma came down during the week, plans for celebrations are already underway. Stock car racing at his parents will be hilarious. Its good to see them and I am glad to show them that I still look well.
This week has seen a few more side effects kick in. None that bad... Wake up each morning with pains in joints from where toxins build up, legs are tired most of the time and have a mild hangover (this could be just withdrawal symptoms from not drinking for 4 weeks now). I'm still eating like a horse, have not had any sickness and have been turning down the anti-sickness drugs, also my hair is the longest it has been for 10 years. Its almost a mullet now. I was expected to lose it last week. I could be the first Chemo patient with a mullet!!
I have still been asking if I can do any work from home. But am starting to realise that its not going to happen. Everything is now revolving around blood counts, how I'm feeling. Any work I got given would be deadline driven and I can't guarantee I can meet any?? Its frustrating and makes me feel slightly useless but I need to find other things to occupy me.
Hospital has me booked in for the whole of Thursday, I'm due 2 units of blood, ambazone, platelets and Chemotherpy. Its going to be a long day. This is not helped when the my body seems reluctant to give a blood sample. Despite last weeks operation the tubes from my chest won't allow the nurses to get a sample. I have to pump the opposite arm and breath deeply to get blood to flow... I'm sat in the middle if the ward doing a water pump impression until they have enough blood. I'm hoping this clears up otherwise I might be in for another operation.
The remainder of the treatments go well, just plug in and wait. Read all of Jono Lomu's autobiography in a day. Will be in need of more books again soon. I see Merv, who was admitted shortly after I was diagnosed, he had been in isolation since the 8th October and only just been allowed out. That's what I thought was going to happen to me. Thank God it didn't I would have gone insane. He is getting through the treatment quite well and has also gone a bit OCD. Also see Karl on my way in.. he is attached to a drip sat outside the hospital smoking a fag. Feel like giving him a slap for been so stupid.
Weekend is coming up, Sarah is doing a houseparty and its Ronan's stag. I would like to make a token appearance to both, but however the closer the time gets I realise its not a good idea. The will be other party's, going along will just be putting myself at risk, I've been lucky so far and want to be able to remain at home for as much of the treatment as possible. Picking up a silly infection would be a big set back. For the moment I still need to be "bubble boy". I'm not liking the isolation this causes. I crave been able to head out, not worry if who I talk to has a cold, not worry if glasses would be clean. Having a relaxing social night out seems months away.. Bugger.
Yesterday I was taken back by my friends generosity... A group had got together and gone and got me a xbox 360... Its a unbelievable gift, one that will help me pass the time over the next few weeks. AJ popped it round on Wednesday night.. Thursday morning I put on a OB's tour shirt to head to hospital, I've never been so proud to put on a rugby shirt... a club and friends who do that bit extra for each other. I will owe more than a few beers to people when I'm through this.
Wibbles and Emma came down during the week, plans for celebrations are already underway. Stock car racing at his parents will be hilarious. Its good to see them and I am glad to show them that I still look well.
This week has seen a few more side effects kick in. None that bad... Wake up each morning with pains in joints from where toxins build up, legs are tired most of the time and have a mild hangover (this could be just withdrawal symptoms from not drinking for 4 weeks now). I'm still eating like a horse, have not had any sickness and have been turning down the anti-sickness drugs, also my hair is the longest it has been for 10 years. Its almost a mullet now. I was expected to lose it last week. I could be the first Chemo patient with a mullet!!
I have still been asking if I can do any work from home. But am starting to realise that its not going to happen. Everything is now revolving around blood counts, how I'm feeling. Any work I got given would be deadline driven and I can't guarantee I can meet any?? Its frustrating and makes me feel slightly useless but I need to find other things to occupy me.
Hospital has me booked in for the whole of Thursday, I'm due 2 units of blood, ambazone, platelets and Chemotherpy. Its going to be a long day. This is not helped when the my body seems reluctant to give a blood sample. Despite last weeks operation the tubes from my chest won't allow the nurses to get a sample. I have to pump the opposite arm and breath deeply to get blood to flow... I'm sat in the middle if the ward doing a water pump impression until they have enough blood. I'm hoping this clears up otherwise I might be in for another operation.
The remainder of the treatments go well, just plug in and wait. Read all of Jono Lomu's autobiography in a day. Will be in need of more books again soon. I see Merv, who was admitted shortly after I was diagnosed, he had been in isolation since the 8th October and only just been allowed out. That's what I thought was going to happen to me. Thank God it didn't I would have gone insane. He is getting through the treatment quite well and has also gone a bit OCD. Also see Karl on my way in.. he is attached to a drip sat outside the hospital smoking a fag. Feel like giving him a slap for been so stupid.
Weekend is coming up, Sarah is doing a houseparty and its Ronan's stag. I would like to make a token appearance to both, but however the closer the time gets I realise its not a good idea. The will be other party's, going along will just be putting myself at risk, I've been lucky so far and want to be able to remain at home for as much of the treatment as possible. Picking up a silly infection would be a big set back. For the moment I still need to be "bubble boy". I'm not liking the isolation this causes. I crave been able to head out, not worry if who I talk to has a cold, not worry if glasses would be clean. Having a relaxing social night out seems months away.. Bugger.
Monday 22 October 2007
The local..
I should know better by now. I am due in for a checkup at the hospital I think they will just be putting me on a drip for antibiotics and perhaps some platelets. This should mean I'm home for lunch. In a scary way all the nurses greeted me in and I recognised the majority of the patients in the ward. The ward in a strange way resembles a local pub... You walk in and are greeted by nurses who all know your name, start chatting to others in the same situation, but instead getting a nice drink you get hooked up to another drip.
Blood count results are not good. Haemoglobin count is down to 6, normal is between 14 and 17. But I feel fine?? It is decided that I need a further 2 units of blood on top of what I was due that day. I'm now booked into the hospital for the day.
I've made a start on Lance Armstongs book. I can relate to his experiences so clearly. In fact I've nearly finished it already. Also made a slow start on learning Spanish. Must make use of this time waiting.
As the week progresses I still don’t get used to not working. I am still able to wonder round without any difficulty so pop out to get lunch when I’m at home. However feeling very OCD, I walk into Somerfield and its crowded and quite a few people who look ill to me. I end up leaving quite quickly. For the rest of the week I am in and out of hospital and the nurses start to run out of spaces in my arm to put needles in. I will need an operation to put a permanent line into my chest by the end of the week.
Second round of Chemo is on Thursday. I am expecting to have more side effects this time, but am relaxed about the process itself. Still no side effects.. Maybe I should ask them to increase the dose?? I may need to get a haircut after all.
Friday morning and I arrive early into hospital for the operation. It does not really feel like they can do much more to me so surprisingly not that worried about it. I don’t think the guy in the bed has been in hospital much, after been asked what he wants for breakfast he requests croissants and jam. He is actually surprised when they laugh at him. I am on nill by mouth until operation is over, the talk of food is making me very hungry. Bizarrely the treatments are making me more hungry rather than less? I eventually am wheeled of to surgery at 10:30.
During the surgery I will have local atheistic and should be able to feel the tubes been passed into my chest. After a few initial prods the procedure is fairly painless, spent most of it talking about wine & rugby. Before I know it I’m all done… But now I have a permanent tube coming from my chest. This will be with me until the treatments over. It’s the first physical mark the disease has had on me… However when it is removed it will be a huge milestone. For now I will just have to learn to live with it.
Will “King Of Lao” comes round for rugby complaining he has not had enough mentions in my blog, France play Argentina in the 3rd place play off in the world cup. It turns out to be a great game and with Will supporting France its hilarious to watch them fall apart with PTB & Whittle.
Helen is down for the weekend, after a brief trip to the hospital its good to get some Fresh air and head up to OB’s to watch the 3rd XV vs St Marys. It’s a typical 3 XV fixture comedy to watch at points but very entertaining. Rob The Tan scores a 70 m try, followed by Monty. I’m glad to see quite a few of the team but just wish I could be out there on the pitch. Also in a way glad to show my face so people see that I’m not on deaths door. Unfortunately can’t stick around to socialise as aware of infection risks. Also is a shame I can’t watch the world cup final with the team..While I have been lucky with treatment to date, some side effects are taking effect.. sleeping patterns are all over the place and ending up sleeping throughout afternoon. I know that this will get worse and am starting to realise how much of a long haul this will be.
Blood count results are not good. Haemoglobin count is down to 6, normal is between 14 and 17. But I feel fine?? It is decided that I need a further 2 units of blood on top of what I was due that day. I'm now booked into the hospital for the day.
I've made a start on Lance Armstongs book. I can relate to his experiences so clearly. In fact I've nearly finished it already. Also made a slow start on learning Spanish. Must make use of this time waiting.
As the week progresses I still don’t get used to not working. I am still able to wonder round without any difficulty so pop out to get lunch when I’m at home. However feeling very OCD, I walk into Somerfield and its crowded and quite a few people who look ill to me. I end up leaving quite quickly. For the rest of the week I am in and out of hospital and the nurses start to run out of spaces in my arm to put needles in. I will need an operation to put a permanent line into my chest by the end of the week.
Second round of Chemo is on Thursday. I am expecting to have more side effects this time, but am relaxed about the process itself. Still no side effects.. Maybe I should ask them to increase the dose?? I may need to get a haircut after all.
Friday morning and I arrive early into hospital for the operation. It does not really feel like they can do much more to me so surprisingly not that worried about it. I don’t think the guy in the bed has been in hospital much, after been asked what he wants for breakfast he requests croissants and jam. He is actually surprised when they laugh at him. I am on nill by mouth until operation is over, the talk of food is making me very hungry. Bizarrely the treatments are making me more hungry rather than less? I eventually am wheeled of to surgery at 10:30.
During the surgery I will have local atheistic and should be able to feel the tubes been passed into my chest. After a few initial prods the procedure is fairly painless, spent most of it talking about wine & rugby. Before I know it I’m all done… But now I have a permanent tube coming from my chest. This will be with me until the treatments over. It’s the first physical mark the disease has had on me… However when it is removed it will be a huge milestone. For now I will just have to learn to live with it.
Will “King Of Lao” comes round for rugby complaining he has not had enough mentions in my blog, France play Argentina in the 3rd place play off in the world cup. It turns out to be a great game and with Will supporting France its hilarious to watch them fall apart with PTB & Whittle.
Helen is down for the weekend, after a brief trip to the hospital its good to get some Fresh air and head up to OB’s to watch the 3rd XV vs St Marys. It’s a typical 3 XV fixture comedy to watch at points but very entertaining. Rob The Tan scores a 70 m try, followed by Monty. I’m glad to see quite a few of the team but just wish I could be out there on the pitch. Also in a way glad to show my face so people see that I’m not on deaths door. Unfortunately can’t stick around to socialise as aware of infection risks. Also is a shame I can’t watch the world cup final with the team..While I have been lucky with treatment to date, some side effects are taking effect.. sleeping patterns are all over the place and ending up sleeping throughout afternoon. I know that this will get worse and am starting to realise how much of a long haul this will be.
Monday 15 October 2007
Working Week
Waking in my own bed on a Monday morning, I feel like I should be heading to work. Instead I have a new routine. Wake up, take tempreture, take drugs, and plan the day. I make a pact to myself I will not watch any daytime TV.
Instead I contact the national blood service to get something moving on arranging some kind of promotion. Also vow to get this blog up to date. I'm hoping the next few weeks will have less surprises and that now that the worse case scenerios have made themselves known more postive news will follow. Hopefully I can keep up good form and battle through this in no time. Start looking at different Spanish courses and send a few queries to tutors in Bristol. A list of things I want to do when this is over starts to take shape. Inca Trail, Dubai Sevens, Bullrun, Be able to speak at least Spanish, Possibly rugby coaching badge.
As it is the working week I also become aware that I am going to be out of the loop at work for 6 months. When I come back I will be effectively starting a new job.. I do not want to stay out of the loop. In fact if the is any work I can do while I am at home I want to do it. Worse thing I can do is sit on my arse all day. I need to be doing something. If I don't then all this time will be wasted.
Instead I contact the national blood service to get something moving on arranging some kind of promotion. Also vow to get this blog up to date. I'm hoping the next few weeks will have less surprises and that now that the worse case scenerios have made themselves known more postive news will follow. Hopefully I can keep up good form and battle through this in no time. Start looking at different Spanish courses and send a few queries to tutors in Bristol. A list of things I want to do when this is over starts to take shape. Inca Trail, Dubai Sevens, Bullrun, Be able to speak at least Spanish, Possibly rugby coaching badge.
As it is the working week I also become aware that I am going to be out of the loop at work for 6 months. When I come back I will be effectively starting a new job.. I do not want to stay out of the loop. In fact if the is any work I can do while I am at home I want to do it. Worse thing I can do is sit on my arse all day. I need to be doing something. If I don't then all this time will be wasted.
Sunday 14 October 2007
Escape From Ward 62
I'm up early. The ward was quite last night. Only me & Uri are in the room. He was diagnoised in Peru. The is no national blood bank or transfussion service there. You rely on friends, or paying someone in the street to help you. To get treatment your family have to sell everything they have.. I doubt I'll ever complain about the NHS again. In Peru he was given his last rights, they said he would die. He married his girlfriend while in a wheelchair borrowing a suit jacket from his best man and making do with whatever rings they could find. He has lived on and is in the UK now, those rings mean more to him and his wife than any diamond ever could.
I'm keen to get out of here. The standard observations and blood tests are done. While they take my blood pressure and other details I stare at the monitor hoping they are ok. They are and I'm released. Its such a relief.
Its good to be at home. A comfy sofa, my own bed and a bit of freedom. I'm not sure if it was the drugs, been up early of or just the sight of my own bed but I sleep for a few hours in the afternoon waking to watch the South Africa vs Argentina game. If Argentina had played like this against Scotland they could have beaten them. South Africa look strong I can't see England beating them, but all my predictions so far have been wrong.
I'm keen to get out of here. The standard observations and blood tests are done. While they take my blood pressure and other details I stare at the monitor hoping they are ok. They are and I'm released. Its such a relief.
Its good to be at home. A comfy sofa, my own bed and a bit of freedom. I'm not sure if it was the drugs, been up early of or just the sight of my own bed but I sleep for a few hours in the afternoon waking to watch the South Africa vs Argentina game. If Argentina had played like this against Scotland they could have beaten them. South Africa look strong I can't see England beating them, but all my predictions so far have been wrong.
Saturday 13 October 2007
Who's Betty
Best nights sleep yet. I don't wake when the nurses come round to replace my drip. The previous day when Charlie & Lexy had popped round we dressed up the stand in a old womens dress, red wig, Elton John glasses and a banana for a smile. I'd forgotten about this when I feel asleep, it had scared the nurse who came in the morning. But made me laugh although it did look a little worrying in the dark.
Still no real signs of symptoms of Chemo. People are planning on popping in throughout today. Proves to be quite a uplifting day. I promise to teach Uri the rules to rugby in time for the semi finals. Seen as he is from Peru and never seen the game before might be a challenge. He still reads through Rugby World and enjoys it.
Doctors come to see how I'm doing... They are surprised how well I'm responding. Body has not had any adverse reactions to the host of drugs they have put into it. No signs of infections, tempretures, blood pressure, oxygen levels are all normal. I may be able to go home tomorrow!! I had prepared to be in here for 3 weeks. What a result. Part of me thinks this is because they think I'm going mad in here. The is no pressure for beds so I am happy they are not clearing me out to make room for someone else. Going home, my own bed, can make my own way round. Small pleasures make such a big difference. I don't want to raise my hopes to much as they will still need to do blood tests before releasing me.
Somehow England beat France in a pretty poor game. My argument Scotland will go further than England is looking pretty poor at the moment.
Still no real signs of symptoms of Chemo. People are planning on popping in throughout today. Proves to be quite a uplifting day. I promise to teach Uri the rules to rugby in time for the semi finals. Seen as he is from Peru and never seen the game before might be a challenge. He still reads through Rugby World and enjoys it.
Doctors come to see how I'm doing... They are surprised how well I'm responding. Body has not had any adverse reactions to the host of drugs they have put into it. No signs of infections, tempretures, blood pressure, oxygen levels are all normal. I may be able to go home tomorrow!! I had prepared to be in here for 3 weeks. What a result. Part of me thinks this is because they think I'm going mad in here. The is no pressure for beds so I am happy they are not clearing me out to make room for someone else. Going home, my own bed, can make my own way round. Small pleasures make such a big difference. I don't want to raise my hopes to much as they will still need to do blood tests before releasing me.
Somehow England beat France in a pretty poor game. My argument Scotland will go further than England is looking pretty poor at the moment.
Friday 12 October 2007
Reality Check
I have not slept again. Despite been tired the was no chance of sleep. Last night a man was brought in on Oxygen. One of the side effects of Chemo is your sense of smell is hightened. I smell the man coming before he even entered the room. He stinks of cigarettes..
His lungs are filling up with fluid. Nurses are desperatly trying to help him. He keeps trying to talk despite nurses trying to stop him from doing this. Each time he does this he chokes and takes another 5 min to recover. The choking is spine chilling, he is in trouble.. So far I've seen people at the tough stages of Chemo but not close to the edge. He has come out of Chemo and infection has taken him.
Even with sleeping pills I can't sleep. I try sleeping the the quiet room with no luck. Eventually he is taken to A&E at 5:00am. I ask the nurses if he is ok later in the morning, they can't tell me. But why was this man smoking?? He must have known the effects it could have.. he may not be able to control the leukaemia but smoking he can stop. Its a black and white decision, I don't understand. With this my resolve to get through the disease is strenghened. The stats lie. The stats include those who ignore advice, those who were unfit to start with, those who resign themselves to the worsed. I will do everything I can to be on the right side of these statistics.
I get a surprise visit from Bristol rugby, Andrew Blowers, Ben Sturnham and Geoff Moon pop in. Despite been a big club its good to see that they still value the community and the efforts I have put in at Bristol over the years. I think they are surprised to see that I'm in good spirits. They ask what the club can do for me. Bristol are in a position where this situation can be put to good use. I ask if we could do some kind of promotion for blood transfussions and doner services. I may not have given blood but this would go a long way to making up for it. It will also give me a good destraction to organise this.
Have lost all appite today, and am tired after last night. Visitors come in but I am drained and not much company. I am desperate for a goods night sleep.
His lungs are filling up with fluid. Nurses are desperatly trying to help him. He keeps trying to talk despite nurses trying to stop him from doing this. Each time he does this he chokes and takes another 5 min to recover. The choking is spine chilling, he is in trouble.. So far I've seen people at the tough stages of Chemo but not close to the edge. He has come out of Chemo and infection has taken him.
Even with sleeping pills I can't sleep. I try sleeping the the quiet room with no luck. Eventually he is taken to A&E at 5:00am. I ask the nurses if he is ok later in the morning, they can't tell me. But why was this man smoking?? He must have known the effects it could have.. he may not be able to control the leukaemia but smoking he can stop. Its a black and white decision, I don't understand. With this my resolve to get through the disease is strenghened. The stats lie. The stats include those who ignore advice, those who were unfit to start with, those who resign themselves to the worsed. I will do everything I can to be on the right side of these statistics.
I get a surprise visit from Bristol rugby, Andrew Blowers, Ben Sturnham and Geoff Moon pop in. Despite been a big club its good to see that they still value the community and the efforts I have put in at Bristol over the years. I think they are surprised to see that I'm in good spirits. They ask what the club can do for me. Bristol are in a position where this situation can be put to good use. I ask if we could do some kind of promotion for blood transfussions and doner services. I may not have given blood but this would go a long way to making up for it. It will also give me a good destraction to organise this.
Have lost all appite today, and am tired after last night. Visitors come in but I am drained and not much company. I am desperate for a goods night sleep.
Thursday 11 October 2007
Happy Chemo...
I have not slept. But feeling good. I want to get started. Just in case teh Chemo makes me feel sick I decide to eat as much as possible. It feels almost like a inmates last meal. First round of drugs arrive. The main drug is steroids.. tastes awful and I'm reminded my moods might go a bit funny.
I should know that if I'm told something will happen first thing then it won't. The Chemo is not ready. It won't be until lunch. Lunch passes, I eat as much as possible again. A time is set for 3:00. From 2:00 I am stomping up and down the ward getting ready for it. 3:00 passes. I'm getting stressed and annoyed with nurses. This is partly down to tension building and the steroids. I take myself out of the ward and go up and down the stairs several times. My legs still burn from lack of oxygen in the blood but I need to do something. They need something to relieve stress in here. This waiting comes to symbolise the effect Leukaemia will have on my life. Its unplanned, I can't control it, I just need to be patient and take care of what I can control.
Phone is filling up with messages of goodluck. I don't reply to any but take heart in the fact people are thinking of me. I'm turning visitors away as I want to know what treatment will do to me. It gets to 5:00 I am resigned to the fact it won't happen today so a few people arrange to pop in after work.
Just as Phil & Will arrive so does the Chemo. I did not really know what to expect. Its a series of injections. The build up does not match the treatment. It is no different from having a drip. Its painless and passes without incident. Now I've had the treatment its waiting for the sideeffects to kick in. The first does shortly after. Wee turns bright pink. They did not tell me about this... After checking with the nurse its normal, actually shows kidneys are working properly.
Charlotte pops in and brings a laptop. I'm connected to the outside world. Now I don't feel so isololated. I catch up on messages of support and whats been going on outside ward 62 for a few days. Makes me feel so much better.
I should know that if I'm told something will happen first thing then it won't. The Chemo is not ready. It won't be until lunch. Lunch passes, I eat as much as possible again. A time is set for 3:00. From 2:00 I am stomping up and down the ward getting ready for it. 3:00 passes. I'm getting stressed and annoyed with nurses. This is partly down to tension building and the steroids. I take myself out of the ward and go up and down the stairs several times. My legs still burn from lack of oxygen in the blood but I need to do something. They need something to relieve stress in here. This waiting comes to symbolise the effect Leukaemia will have on my life. Its unplanned, I can't control it, I just need to be patient and take care of what I can control.
Phone is filling up with messages of goodluck. I don't reply to any but take heart in the fact people are thinking of me. I'm turning visitors away as I want to know what treatment will do to me. It gets to 5:00 I am resigned to the fact it won't happen today so a few people arrange to pop in after work.
Just as Phil & Will arrive so does the Chemo. I did not really know what to expect. Its a series of injections. The build up does not match the treatment. It is no different from having a drip. Its painless and passes without incident. Now I've had the treatment its waiting for the sideeffects to kick in. The first does shortly after. Wee turns bright pink. They did not tell me about this... After checking with the nurse its normal, actually shows kidneys are working properly.
Charlotte pops in and brings a laptop. I'm connected to the outside world. Now I don't feel so isololated. I catch up on messages of support and whats been going on outside ward 62 for a few days. Makes me feel so much better.
Wednesday 10 October 2007
Waiting Game
Now I just need to wait for test results. As far as I know I don't have any more tests for today. A treatment timetable is passed to me but would only ever make sense to the person who wrote it. Most of it is irrelevant as depends on how my body reacts to treatment and results of tests.
Positive news is that Chemo starts tomorrow. Should be able to get started first thing tomorrow. Side effects are explained to me, mood swings, pins and needles, sickness, hair loss and of course no immune system for a few days (Just in case I was not going to go OCD on cleaning hands etc already). Nurses try to get me to read leaflets. I ask if the is anything extra in their other than what I've been told.. the isn't so I push aside and ignore. One of the nurses who I have been talking to quite a bit will be giving me the Chemo so will talk me through it.
Have a few more visitors, I don't think I can hide any excitement about starting treatment. The sooner it starts the sooner I can get back to normal and out of here. I have a few hours to myself after. This place is starting to drive me crazy. After losing a few hours reading and listening to music I head back into the room. It stinks of sweetcorn. Karl has had a stem cell transplant. It has the strange side effect of producing this smell. Its extremely strong. I'm keen to get a good nights sleep before tomorrow. A new patient arrives and snores like a broken exhaust pipe. I long for my own bed and a good nights sleep.
Positive news is that Chemo starts tomorrow. Should be able to get started first thing tomorrow. Side effects are explained to me, mood swings, pins and needles, sickness, hair loss and of course no immune system for a few days (Just in case I was not going to go OCD on cleaning hands etc already). Nurses try to get me to read leaflets. I ask if the is anything extra in their other than what I've been told.. the isn't so I push aside and ignore. One of the nurses who I have been talking to quite a bit will be giving me the Chemo so will talk me through it.
Have a few more visitors, I don't think I can hide any excitement about starting treatment. The sooner it starts the sooner I can get back to normal and out of here. I have a few hours to myself after. This place is starting to drive me crazy. After losing a few hours reading and listening to music I head back into the room. It stinks of sweetcorn. Karl has had a stem cell transplant. It has the strange side effect of producing this smell. Its extremely strong. I'm keen to get a good nights sleep before tomorrow. A new patient arrives and snores like a broken exhaust pipe. I long for my own bed and a good nights sleep.
Tuesday 9 October 2007
I'm not a cripple, just a little paranoid..
After morning routine nurses sits down to go through plans for today. I am going to be busy today. Due a CT scan and have to go to Southmead for some further tests.
I have no idea what a CT scan is, nurses and doctors assume that I know about these things. Its a 3d xray of my internal organs to check my kidney and liver are still working. I may regret those extra jugs in Lizard lounge after today? To do this scan they make you drink various dyes which will show up on the Xray and then inject you with some radioactive liquid. I am brought a jug of orange juice containing the dyes. I'm told it will taste horrible and I have half an hour to drink it. Turns out it tastes exactly like one of Lizard Lounges jugs.
To head to the xray a hospital porter is sent to collect me. Despite still been perfectly able they insist that I go in a wheelchair. I'm not even allowed to help hold doors open. I have been stuck on this ward since Sat so would have appreciated the walk but insurance policies won't let me. The xray itself is a strange experience. A fluid is injected which sends a burning sensation into the veins. You are then passed through a donut shaped machine like paper through a photocopier. I've already been in the hospital to long, I actually quite enjoy it.
I am meant to wait for the porters to come back and collect me. I think visitors are waiting for me and the porter may take awhile. I decide to leg it, with a little help I find my way back to the ward.
This afternoon I am shipped off to Southmead. Taxi drops me at the wrong place and I wonder round the hospital searching for the right ward. Eventually get this sorted and tests done. However the is complete confusion over the taxi taking me back to the BRI. I end up waiting around reception for over an hour. The are so many diseased people about. I know my immune system is shot and don't want to be anywhere near them. I going a little OCD. I've never been so aware of each cough or splutter. I really don't want to be here.
Finally get back to the BRI. Charlie who has helped me deal with everything is been released today. In a strange way I think he is sad to go.. We have got on well over the past few days and he has helped me realised how to tackle the upcoming hardships. Once he is gone the ward falls silent.. Everyone left is in a self imposed isolation.
I have no idea what a CT scan is, nurses and doctors assume that I know about these things. Its a 3d xray of my internal organs to check my kidney and liver are still working. I may regret those extra jugs in Lizard lounge after today? To do this scan they make you drink various dyes which will show up on the Xray and then inject you with some radioactive liquid. I am brought a jug of orange juice containing the dyes. I'm told it will taste horrible and I have half an hour to drink it. Turns out it tastes exactly like one of Lizard Lounges jugs.
To head to the xray a hospital porter is sent to collect me. Despite still been perfectly able they insist that I go in a wheelchair. I'm not even allowed to help hold doors open. I have been stuck on this ward since Sat so would have appreciated the walk but insurance policies won't let me. The xray itself is a strange experience. A fluid is injected which sends a burning sensation into the veins. You are then passed through a donut shaped machine like paper through a photocopier. I've already been in the hospital to long, I actually quite enjoy it.
I am meant to wait for the porters to come back and collect me. I think visitors are waiting for me and the porter may take awhile. I decide to leg it, with a little help I find my way back to the ward.
This afternoon I am shipped off to Southmead. Taxi drops me at the wrong place and I wonder round the hospital searching for the right ward. Eventually get this sorted and tests done. However the is complete confusion over the taxi taking me back to the BRI. I end up waiting around reception for over an hour. The are so many diseased people about. I know my immune system is shot and don't want to be anywhere near them. I going a little OCD. I've never been so aware of each cough or splutter. I really don't want to be here.
Finally get back to the BRI. Charlie who has helped me deal with everything is been released today. In a strange way I think he is sad to go.. We have got on well over the past few days and he has helped me realised how to tackle the upcoming hardships. Once he is gone the ward falls silent.. Everyone left is in a self imposed isolation.
Monday 8 October 2007
Welcome Distractions
Hospital is no place for me, woken at 6:00 for routine observations. Once awake you may as well get up and wonder around. But the is nowhere to go. After 2 min you have said hello to all the nurses circled the ward and are back at square 1. Trouble is the doctors have told me this is to be my home for the next 3 weeks..
As I was first up the doctors decided to get all my tests out of the way. A further bone marrow is required. Think the doctor this time is more practiced and it is over quickly. As I know what is coming up even manage to read the sport in the paper for the majority of it. Following this another doctor wonders in to take blood. My arms are fast becoming pin cusions.
I get the first visitor of the day. Phil The Bear is waiting for me once I leave the treatment room. News is spreading fast through Bristol and beyond. We chat and tend to avoid conversation about the Leukaemia. Helen arrives she flys back to Glasgow today, Get a phone call from Australia from Weaver & Claire, followed shortly by a phone call from my Aunt. The rest of the day is a revolving door of visitors arriving and leaving. It is the best medicine I could have at the moment best distraction that I could have. I had planned to read papers and get through a few books but in the end I don't have the time.
I've had to cancel going to Dubai for the sevens, Rob The Tan comes in and has a plan to replace me on the tour. I will be there in spirit and amasing tour fines. I will have to make up for it next year when I can make it again.
Finish the day chatting to other patients, they are all quite jealous. The BRI centre is one of the main centres in the UK. People come from far and wide to be treated here (some have even relocated). As I only live a few miles away and most of my friends are close by I will have no shortage of support and distractions.
As I was first up the doctors decided to get all my tests out of the way. A further bone marrow is required. Think the doctor this time is more practiced and it is over quickly. As I know what is coming up even manage to read the sport in the paper for the majority of it. Following this another doctor wonders in to take blood. My arms are fast becoming pin cusions.
I get the first visitor of the day. Phil The Bear is waiting for me once I leave the treatment room. News is spreading fast through Bristol and beyond. We chat and tend to avoid conversation about the Leukaemia. Helen arrives she flys back to Glasgow today, Get a phone call from Australia from Weaver & Claire, followed shortly by a phone call from my Aunt. The rest of the day is a revolving door of visitors arriving and leaving. It is the best medicine I could have at the moment best distraction that I could have. I had planned to read papers and get through a few books but in the end I don't have the time.
I've had to cancel going to Dubai for the sevens, Rob The Tan comes in and has a plan to replace me on the tour. I will be there in spirit and amasing tour fines. I will have to make up for it next year when I can make it again.
Finish the day chatting to other patients, they are all quite jealous. The BRI centre is one of the main centres in the UK. People come from far and wide to be treated here (some have even relocated). As I only live a few miles away and most of my friends are close by I will have no shortage of support and distractions.
Sunday 7 October 2007
3 Pints Later
Last night I was given my first blood transfusion. I have a tube now attached to my left hand. It looks like I might have this for awhile. Its a strange feeling, the first bit of solution sends a cold feeling up into my veins. The first transfusion starts at midnight, it last 3 hours with this and the hospital noises I don't sleep and end up reflecting on what has happened.. Think for a few hours how grateful I am to whomever provided this blood without it people on this ward would never make it through their treatments.. Why have I never given blood??
Nurses come round at 6:00 to take blood pressure, temperature etc. This will come to form part of a daily routine. The next pint of blood is attached to me. The pump is plugged in to the wall, as the ward is full of long timers, not much is explained to me. I assume I'm bed bound. Until I see Colin wonder by attached to a drip. I know my parents will be flying in soon. I don't want them to see me with a bag of blood attached. I ask Iain to delay them, at least then I can present a healthy image. Unfortunately another bag is required this will take me up to 12:00.
Mum & Dad arrive, they seem to relieved to see that I actually still look well. They have been researching. I don't want to know. The are many types, possibilities and test results to come back. So much pf the information they are now talking about could be irrelevant it just serves to fuel uncertainty.
I tell my parents what has happened and what I know so far. I'm not expecting to find out much more today as the consultants are not expected to be in until tomorrow. So I am surprised when he turns up to see me. I ask to speak to him alone before speaking to my parents.. I want to be able to take in any bad news before telling Mum & Dad.
The is so much to take in. I have Acute Lymphoblastic Leukaemia (ALL). In all honesty I don't care what its called but just want to know how to get rid of it. I'm talked through the stages of treatment. I will be having Chemotherpy within the week. The initial treatment will take 8 weeks and get the leukaemia to remission. The is a 90% chance of been able to do this. Thats good right... Without further treatment it will come back and will be harder to get rid of. Long term survival rates are 50%.. How do I get on the right side of that stat.
The treatment options after remission will vary, Iain & Helen are going to be checked to see if they have a tissue match. Very thankful for having brother and sister right now.
Still so many unknowns, how I respond to treatment, infections, further tests etc. The doctors cannot tell how it will effect me, every treatment is different and all people react differently. The only thing to do is take each stage step by step.
I can take all this in. As I'd prepared for the worse most of this is expected. Its time to go through this with the parents. The research my Dad has done means he asks further questions. The doctors don't have answers yet... A few points clearly get to them, I just hold it together through this and am relieved that its over.
I'm taken for an xray and get a few hours break from parents, they come back later to watch rugby. My dad has been on the whiskey to calm his nerves. It will go down as the worse place that I will ever watch Scotland play rugby. We watch it in the quiet room. Scotland make far to many mistakes to cause Argentina any worries. They do manage a good try. Dad jumps up and celebrates and then realises where he is. A nurse comes in to see what is going on.. Most excitement on this ward for awhile. Scotland lose.. not my lucky weekend.
Nurses come round at 6:00 to take blood pressure, temperature etc. This will come to form part of a daily routine. The next pint of blood is attached to me. The pump is plugged in to the wall, as the ward is full of long timers, not much is explained to me. I assume I'm bed bound. Until I see Colin wonder by attached to a drip. I know my parents will be flying in soon. I don't want them to see me with a bag of blood attached. I ask Iain to delay them, at least then I can present a healthy image. Unfortunately another bag is required this will take me up to 12:00.
Mum & Dad arrive, they seem to relieved to see that I actually still look well. They have been researching. I don't want to know. The are many types, possibilities and test results to come back. So much pf the information they are now talking about could be irrelevant it just serves to fuel uncertainty.
I tell my parents what has happened and what I know so far. I'm not expecting to find out much more today as the consultants are not expected to be in until tomorrow. So I am surprised when he turns up to see me. I ask to speak to him alone before speaking to my parents.. I want to be able to take in any bad news before telling Mum & Dad.
The is so much to take in. I have Acute Lymphoblastic Leukaemia (ALL). In all honesty I don't care what its called but just want to know how to get rid of it. I'm talked through the stages of treatment. I will be having Chemotherpy within the week. The initial treatment will take 8 weeks and get the leukaemia to remission. The is a 90% chance of been able to do this. Thats good right... Without further treatment it will come back and will be harder to get rid of. Long term survival rates are 50%.. How do I get on the right side of that stat.
The treatment options after remission will vary, Iain & Helen are going to be checked to see if they have a tissue match. Very thankful for having brother and sister right now.
Still so many unknowns, how I respond to treatment, infections, further tests etc. The doctors cannot tell how it will effect me, every treatment is different and all people react differently. The only thing to do is take each stage step by step.
I can take all this in. As I'd prepared for the worse most of this is expected. Its time to go through this with the parents. The research my Dad has done means he asks further questions. The doctors don't have answers yet... A few points clearly get to them, I just hold it together through this and am relieved that its over.
I'm taken for an xray and get a few hours break from parents, they come back later to watch rugby. My dad has been on the whiskey to calm his nerves. It will go down as the worse place that I will ever watch Scotland play rugby. We watch it in the quiet room. Scotland make far to many mistakes to cause Argentina any worries. They do manage a good try. Dad jumps up and celebrates and then realises where he is. A nurse comes in to see what is going on.. Most excitement on this ward for awhile. Scotland lose.. not my lucky weekend.
Saturday 6 October 2007
Facing Up..
Friday 6th October.
Weekend is here and apart from this flu that I seem to have I'm feeling good, a weekend of watching rugby and a a big night out planned after. If I can will make it to help with mini's training although still feeling a little run down. 2 drinks will probably make me feel better.. On way home & get a call from doctors, a little strange its 8:00 bit late. They say I may need some further tests done tomorrow on my Bone Marrow?? I have some ideas of what this might be, I push to the back of my mind. It can't be that bad.. I played rugby last week although incredibly badly (some might argue I do that every week).
Saturday 7th October.I'm up early, waiting for call from Soutmead Hospital. I just want to get this test done and over. If I can get out by 1:00 can still bench for AJ, if not I can just watch Eng vs Aus judgement day for Eng who on form should be knocked out. Get the call at 10:00 they want me there at 10:30. I still reassure myself that it will be nothing so drive up by myself. I head towards ward C, not sure if this is the right place, its the ward for acute illnesses. Everyone here is triple my age. The nurses ask who I'm here to visit? I'm checking in.. Other patients stare at me as I'm lead to a bed. I'm too well to be here, I'll be back to normal by next week. I'm sure they think I'm a fraud some hypochondriac looking for attention.The doctor arrives, he looks about 20, spotty and nervous. He explains the bone marrow test. This is going to be unpleasant. I just want to get this done and get out of here. I will need a drink after this, lucky the world cup is on..I assume the position, lieing on my side arse sticking out. At this point I'm glad no one came with me as the is far to much potential for crude jokes, when I get to the pub later will hear them all. 2 doses of atheistic and he is ready to go for real. I don't feel the needle go though the skin, next thing I know the is a Needle on my Spine! I need something to distract me. I start counting squares in the curtains just don't think of the needle. He blunts the needle on my bone. He has to start again... Takes another 2 attempts to get enough of a sample of the bone marrow. He complements me on the strength of my bones, I'm not that happy about it at the moment. Especially as the next needle needs to drill into my Spine. He struggles to break through, feels like he is using a small corkscrew. If counted all the squares I can see and start again.After we are done the pain subsides quickly. The doctor shows me the samples as if I should be proud. Really don't care just want the results. I am to stay at Southmead while waiting. The student nurse who was watching has gone pale. Makes me look quite healthy in comparison, says she thinks I'm really brave. I think about telling her about counting squares but stop myself.I hate hospitals. I want to get out of here and get on with the weekend. Its now 2:00 I was meant have results at 1:00. I start watching Eng vs Aus, not paying much attention now starting to worry about results. 2 doctors return.. One of them clearly senior to the doctor that took the sample. He is looking very sheepish. This is bad.. Curtains are drawn and the news is broken.All I really heard from the conversation was Leukaemia. I can't take in anything else. Its does not sink in, it is still registering. They leave me alone a nurse will be with me in a few minutes. Still takes around another minute to hit me. World has just turned upside down, immediate thoughts are of what I'm losing. I think of all that was going well, all things I was looking forward to. Dubai, Brizzley Bear, Prospects at work, Skiing... everything was going so well. I have so much to lose friends, family, house, CIMA . Its all over..Nurse arrives. Asks if I'm alright. I can just think of what an absurd question this is. I actual half go to laugh then breakdown into tears on her shoulder. In all honesty I don't know much about Leukaemia so what am I crying about. I'm crying because of the fear, all I know is that it can kill me.I'm here on my own, and calm down I am been sent to a specialist unit at he BRI, I need Iain to drive me and need to phone parents. I am trying to pull myself together. I don't want to cry down the phone to either. I go to dial but can't I need more time. How do you tell your parents this??Iain is on his way. I have 20 min to sort myself out. Walking out from behind the curtain I all the old patients stare at me again. They were staring at me questioning why I was here but not because they thought I was some fraud, but because they knew I was in for bad news, they were looks of pity. While I have not fully comprehended the impacts this will have I think I'm ready to start dealing with this. I just need to get past today at the moment. As I'm going to be in hospital for awhile, think of learning a language. The must be something good that can come of this. Underneath I still have the fear.I'm taken to the BRI by taxi while Iain takes my car home and goes to collect changes of clothes for me. I'm told I'll be in the BRI for awhile. I'm lead to a bed at the BRI this still does not seem real. I don't think I believe its happening. Thoughts dwell on the fact I've had a good life, no real hardships, lots of goodtimes, I really can't complain. Before I've even talked to a doctor another patient greats me, I expected everyone in here to look half dead. He looks normal. He seems fairly upbeat. With this I realise that the disease and how I handle it is up to me. I may not have been able to control getting it but the way I respond is up to me. I can sit back and fester or fight it, I have had a good life, I am more than ever grateful for what I've got. But... thats even more reason to fight more. While I'm stuck with this disease but I resolve to come out of this and fight it won't hold me back. How sweet will it feel when I rise above it, how good will my next try for OB's feel, how good will it feel to run out as Brizzley at the memorial, how good will be to be in the bar and drink to the future with friends. I'm not done yet, beating this will just make life that bit sweeter to live. I have everything to fight for.With this I'm ready. I don't want anyones pity, time for sympathy has passed. I've been dealt a crap hand. The first thoughts are always the worse fears. I have looked at the worse that can happen. I may not be able to control much about how this disease effects me but I can do my best to make sure I come out on top. I believe I can beat it.. I have seen someone who is beating it. If the mind believes the rest will follow.Consultants explain what has happened to me at the BRI, blood counts are all extremely low. I have half the oxygen in my blood as I should. White Blood cells are low as well as Platelets. This means my immune system is not working properly and explains so much of why I had not been able to train or play properly over the last 3 weeks. Treatment is needed asap.. As immune system is low they need to keep me in hospital. I will be here around 3 weeks and off work for at least 6 months. Life is on pause but so is so much more to come.With this in mind I can face talking to parents, I feel confident I can reassure them. At the end of the day I am still healthy. I'm fit, young and my resolve is growing. I can beat this. They fly in tomorrow and Helen flys in tonight. Support is arriving and I need it.
Weekend is here and apart from this flu that I seem to have I'm feeling good, a weekend of watching rugby and a a big night out planned after. If I can will make it to help with mini's training although still feeling a little run down. 2 drinks will probably make me feel better.. On way home & get a call from doctors, a little strange its 8:00 bit late. They say I may need some further tests done tomorrow on my Bone Marrow?? I have some ideas of what this might be, I push to the back of my mind. It can't be that bad.. I played rugby last week although incredibly badly (some might argue I do that every week).
Saturday 7th October.I'm up early, waiting for call from Soutmead Hospital. I just want to get this test done and over. If I can get out by 1:00 can still bench for AJ, if not I can just watch Eng vs Aus judgement day for Eng who on form should be knocked out. Get the call at 10:00 they want me there at 10:30. I still reassure myself that it will be nothing so drive up by myself. I head towards ward C, not sure if this is the right place, its the ward for acute illnesses. Everyone here is triple my age. The nurses ask who I'm here to visit? I'm checking in.. Other patients stare at me as I'm lead to a bed. I'm too well to be here, I'll be back to normal by next week. I'm sure they think I'm a fraud some hypochondriac looking for attention.The doctor arrives, he looks about 20, spotty and nervous. He explains the bone marrow test. This is going to be unpleasant. I just want to get this done and get out of here. I will need a drink after this, lucky the world cup is on..I assume the position, lieing on my side arse sticking out. At this point I'm glad no one came with me as the is far to much potential for crude jokes, when I get to the pub later will hear them all. 2 doses of atheistic and he is ready to go for real. I don't feel the needle go though the skin, next thing I know the is a Needle on my Spine! I need something to distract me. I start counting squares in the curtains just don't think of the needle. He blunts the needle on my bone. He has to start again... Takes another 2 attempts to get enough of a sample of the bone marrow. He complements me on the strength of my bones, I'm not that happy about it at the moment. Especially as the next needle needs to drill into my Spine. He struggles to break through, feels like he is using a small corkscrew. If counted all the squares I can see and start again.After we are done the pain subsides quickly. The doctor shows me the samples as if I should be proud. Really don't care just want the results. I am to stay at Southmead while waiting. The student nurse who was watching has gone pale. Makes me look quite healthy in comparison, says she thinks I'm really brave. I think about telling her about counting squares but stop myself.I hate hospitals. I want to get out of here and get on with the weekend. Its now 2:00 I was meant have results at 1:00. I start watching Eng vs Aus, not paying much attention now starting to worry about results. 2 doctors return.. One of them clearly senior to the doctor that took the sample. He is looking very sheepish. This is bad.. Curtains are drawn and the news is broken.All I really heard from the conversation was Leukaemia. I can't take in anything else. Its does not sink in, it is still registering. They leave me alone a nurse will be with me in a few minutes. Still takes around another minute to hit me. World has just turned upside down, immediate thoughts are of what I'm losing. I think of all that was going well, all things I was looking forward to. Dubai, Brizzley Bear, Prospects at work, Skiing... everything was going so well. I have so much to lose friends, family, house, CIMA . Its all over..Nurse arrives. Asks if I'm alright. I can just think of what an absurd question this is. I actual half go to laugh then breakdown into tears on her shoulder. In all honesty I don't know much about Leukaemia so what am I crying about. I'm crying because of the fear, all I know is that it can kill me.I'm here on my own, and calm down I am been sent to a specialist unit at he BRI, I need Iain to drive me and need to phone parents. I am trying to pull myself together. I don't want to cry down the phone to either. I go to dial but can't I need more time. How do you tell your parents this??Iain is on his way. I have 20 min to sort myself out. Walking out from behind the curtain I all the old patients stare at me again. They were staring at me questioning why I was here but not because they thought I was some fraud, but because they knew I was in for bad news, they were looks of pity. While I have not fully comprehended the impacts this will have I think I'm ready to start dealing with this. I just need to get past today at the moment. As I'm going to be in hospital for awhile, think of learning a language. The must be something good that can come of this. Underneath I still have the fear.I'm taken to the BRI by taxi while Iain takes my car home and goes to collect changes of clothes for me. I'm told I'll be in the BRI for awhile. I'm lead to a bed at the BRI this still does not seem real. I don't think I believe its happening. Thoughts dwell on the fact I've had a good life, no real hardships, lots of goodtimes, I really can't complain. Before I've even talked to a doctor another patient greats me, I expected everyone in here to look half dead. He looks normal. He seems fairly upbeat. With this I realise that the disease and how I handle it is up to me. I may not have been able to control getting it but the way I respond is up to me. I can sit back and fester or fight it, I have had a good life, I am more than ever grateful for what I've got. But... thats even more reason to fight more. While I'm stuck with this disease but I resolve to come out of this and fight it won't hold me back. How sweet will it feel when I rise above it, how good will my next try for OB's feel, how good will it feel to run out as Brizzley at the memorial, how good will be to be in the bar and drink to the future with friends. I'm not done yet, beating this will just make life that bit sweeter to live. I have everything to fight for.With this I'm ready. I don't want anyones pity, time for sympathy has passed. I've been dealt a crap hand. The first thoughts are always the worse fears. I have looked at the worse that can happen. I may not be able to control much about how this disease effects me but I can do my best to make sure I come out on top. I believe I can beat it.. I have seen someone who is beating it. If the mind believes the rest will follow.Consultants explain what has happened to me at the BRI, blood counts are all extremely low. I have half the oxygen in my blood as I should. White Blood cells are low as well as Platelets. This means my immune system is not working properly and explains so much of why I had not been able to train or play properly over the last 3 weeks. Treatment is needed asap.. As immune system is low they need to keep me in hospital. I will be here around 3 weeks and off work for at least 6 months. Life is on pause but so is so much more to come.With this in mind I can face talking to parents, I feel confident I can reassure them. At the end of the day I am still healthy. I'm fit, young and my resolve is growing. I can beat this. They fly in tomorrow and Helen flys in tonight. Support is arriving and I need it.
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