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.
Tuesday 27 November 2007
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..
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