I have had a few people say to me since the last blog: 'that is such good news about the donor, I'm not sure why it is such good news, but I'm so happy for you'. Well this entry is for you, and to understand why it is such good news we have to look at what was planned.
The reason I have just had a stem cell transplant, or self transplant, is because there was no donor available at the time when I needed the procedure doing. The only options presenting were to perform a transplant using stem cells from umbilical cords - a cord blood transplant - or something else even more drastic using my parents stem cells or an unmatched donor transplant. The latter two options were never discussed in length as I believe that would have only been done in very dire circumstances. As for the cord blood transplant this was discussed and the issues with it as an option were quite extensive. To go on I need to explain what I know about tissue typing.
When looking for a donor match, the consultant needs to know both the patient and donor human leukocyte antigens (HLA) or 'tissue type'. My limited understanding of this as explained to me in layman's terms by my consultant is that they attempt to match 5 HLA: A, B, C, Dr and Dq. For an acceptable 'matched unrelated donor' (MUD or mudblood to those in the know), the aim is to match 4 out of 5 antigens. A is generally the easiest to match leaving most patients requiring 3 out of the remaining 4 to match. These are harder to match as they are combined, i.e. a particular B means you will have a certain range of C, and a particular Dr means you will have a certain range of Dq. I do not know how many combinations there are but I assume there are a lot. Why? Well it is my A that is 'odd'. When I was formed some genes jumped around between my mum and dad's combined chromosomes to create a unique A, which was never going to be matched with anyone anywhere, meaning for me to get a donor someone out there had to have the exact combination of B, C, Dr and Dq as me to be a suitable donor. The response of my consultant was that, although we couldn't rule out someone out there being suitable, the chances were so small that we needed to start thinking about the other options. That is why I think there are a lot of combinations and that is why a donor turning up on the list which matches me is such incredible, unlikely news.
For a cord blood transplant as the stem cells are quite immature, there is only a requriement to match 3 out of 5 antigens when tissue typing. However, the first issue with cord blood is that you do not get enough stem cells for an adult out of one cord, therefore you have to mix the cells from a number of cords to get enough. The understanding of the effects of mixing cords is not understood particularly well as not many cord blood transplants have been perfomed in adults, and the number of myeloma patients treated with a cord blood transplant is probably in the region of 0. The next issue is that the stem cells are less likely to graft (do what they are supposed to), or take longer to graft once inside, meaning either extended time in hospital or the transplant not working at all. Again as cord blood transplants in adults are so new, this is something else not particularly well understood. If the transplant worked, I would have the immunity of a baby and there are significant issues with infection post transplant, much greater than those when having a regular donor transplant. However, the bottom line at the time this was being considered and the main reason a cord blood transplant was not performed (thank god now) was that the people who hold the purse strings would not approve a procedure costing in the 10's of thousands which has no research backing up it's efficacy, especially without the standard treatments being tried first - hence the self transplant going ahead. Plus my consultant wasn't happy with the closest matches found in the cord blood registry, my odd tissue type not helping there either. So we would be going into unknown territory, with increased risks which are little understood (including increased risk of death or some serious disability) and with no way of knowing if it would actually work. Quite a desparate solution.
Hopefully that gives some indication why finding a donor has been such an incredible bit of news. The plan for me has gone from: 'let's see where the self transplant gets us (not considered to get me into remission for long) then think about what type of high risk transplant we should do when we absolutely have to', to: 'let's see if you're in remission then blast this disease properly using a well understood procedure that gives you a 50% chance of a cure'. Yes, it is worth remembering that the allogeneic (allo-gen-AY-ik) or donor transplant has been shown to be 50% effective (feet firmly back on the ground), and does itself hold risks such as graft-versus-host disease and a 25% chance of mortality. But this is the best option, and lowest risk option there is, and certainly the one that if nothing else leads to the longest remission. It is no walk in the park, it will result in me being pretty ill for at least 6 months and potentially up to a year, but compared to what was being considered...well it says something about the decisions being made that when he found out I had a donor my consultant had to be told to calm down.
I also found out yesterday that my platelet levels are now 52 million per litre of blood which means I can have my central line out. Below 50 mill and they won't remove it due to the possibility of bleeding. As the nurse joked: 'we wouldn't want to get this far then have you bleed to death taking that out, ha ha, ha!'. Ha ha indeed.
Thursday, 29 March 2012
Saturday, 24 March 2012
It only takes one
'It only takes one donor to walk through the door and be a match for you.'
That is what we told all those months ago when we had the rather crushing news that there were no donors on the national and international database at that time that matched my 'odd' tissue type. They would continue to look but the chances of a match coming up for me were so unlikely that we had to stop considering this as an option, and face the fact that something more desperate would have to be done when necessary.
Well, sometimes the most unlikely things can still happen. And right now, somewhere out there is a 37 year old man who, in the last few months, has entered himself on the register and he matches me. He has also been contacted, had everything explained to him and given further blood samples to verify his identity. This means he is a willing donor. I hope I do not need to explain how flipping amazing this is. And god bless this man, I want to kiss him.
I found out of a 'potential' donor last Saturday when the consultant told me, but they had not obtained the further blood sample at the time so the consultant was not sure if he was a willing donor. This has been the hardest secret I have ever had to keep, but I wanted to be sure before letting it out.
I found out yesterday, and have only just got the point where I don't burst into tears everytime I think or talk about it. I am not going to say anymore about this in this post, but I will be posting another blog in the next few days to fully explain why this is such good news and what this means to my treatment now.
As for my recovery it is pretty much all good news. My neutrophils are up to 2.3 which is at the lower end of normal (normal being 2-8), my white blood cell count is good, red blood cell count still rising, etc. The only thing not quite there yet are the platelets which were 18, when they want them to be over 50. This meant that I could not have my central line out as there is a risk of bleeding, which is a shame, but I barely notice it now apart from at shower time because it has to be kept dry. The consultant does not want to see me for four weeks, on the condition that I keep feeling better, which is great as some people have to go weekly. And he took me off five of the seven drugs I was given when I left hospital, which is also good.
My appetite is back and I am eating normally, although I get full really quickly and I had lost a bit more weight when measured yesterday, so we are on a mission to fatten me up, which is quite exciting really. I love full cream milk. My only gripes are that I am cold all the time (I don't know if this is to do with a lack of hair as I am even having to wear a woolly hat round the house), and sore feet which I got today when I was walking around for quite a while. And I mean really sore feet, like they have been sun-burned and I was actually finding it quite hard to walk by the time I gave up. But these are small problems and nothing to really moan about. And anyway, since finding out I have a donor I have found it hard to be sad about anything!
That is what we told all those months ago when we had the rather crushing news that there were no donors on the national and international database at that time that matched my 'odd' tissue type. They would continue to look but the chances of a match coming up for me were so unlikely that we had to stop considering this as an option, and face the fact that something more desperate would have to be done when necessary.
Well, sometimes the most unlikely things can still happen. And right now, somewhere out there is a 37 year old man who, in the last few months, has entered himself on the register and he matches me. He has also been contacted, had everything explained to him and given further blood samples to verify his identity. This means he is a willing donor. I hope I do not need to explain how flipping amazing this is. And god bless this man, I want to kiss him.
I found out of a 'potential' donor last Saturday when the consultant told me, but they had not obtained the further blood sample at the time so the consultant was not sure if he was a willing donor. This has been the hardest secret I have ever had to keep, but I wanted to be sure before letting it out.
I found out yesterday, and have only just got the point where I don't burst into tears everytime I think or talk about it. I am not going to say anymore about this in this post, but I will be posting another blog in the next few days to fully explain why this is such good news and what this means to my treatment now.
As for my recovery it is pretty much all good news. My neutrophils are up to 2.3 which is at the lower end of normal (normal being 2-8), my white blood cell count is good, red blood cell count still rising, etc. The only thing not quite there yet are the platelets which were 18, when they want them to be over 50. This meant that I could not have my central line out as there is a risk of bleeding, which is a shame, but I barely notice it now apart from at shower time because it has to be kept dry. The consultant does not want to see me for four weeks, on the condition that I keep feeling better, which is great as some people have to go weekly. And he took me off five of the seven drugs I was given when I left hospital, which is also good.
My appetite is back and I am eating normally, although I get full really quickly and I had lost a bit more weight when measured yesterday, so we are on a mission to fatten me up, which is quite exciting really. I love full cream milk. My only gripes are that I am cold all the time (I don't know if this is to do with a lack of hair as I am even having to wear a woolly hat round the house), and sore feet which I got today when I was walking around for quite a while. And I mean really sore feet, like they have been sun-burned and I was actually finding it quite hard to walk by the time I gave up. But these are small problems and nothing to really moan about. And anyway, since finding out I have a donor I have found it hard to be sad about anything!
Tuesday, 20 March 2012
Home
Arrived home yesterday afternoon about 2pm following a rather less than ideal pick up involving the car breaking down temporarily outside the hospital. Once we had the engine started we didn't dare turn it off again, so I ended up charging back in to the ward to get medications while the car was kept running outside. Sat in the back with the girls all the way home and have been loving their company ever since. Missed them all so much it is great to be back.
Thought it might feel a bit odd at first and take a while for them to get used to me being around, but within about half an hour it was like I'd never gone away. And today I've even been telling them off - honeymoon's over kiddies.
So nice to be in my own bed, eating good food. But they were right at the hospital, it is really tiring being at home. More than I imagined it would be. Three hours in the company of my two and I was ready for bed! In hospital I was having a nap after lunch! No chance of that anymore.
I was repeatedly told yesterday that I had done incredibly well while in hospital, and that the fact that my bloods were improving so quickly was the main reason I was allowed to leave in just over two weeks. Which is really good. Less good is the fact that right at the beginning of all this the nurse said that a lot of people get home, think they've got away without losing hair and it all falls out at home. Obviously mine started to fall out a few days ago, but my word droppage has accelerated the very day I get back! So it is still going, eyebrows still in place though. Phew.
Thought it might feel a bit odd at first and take a while for them to get used to me being around, but within about half an hour it was like I'd never gone away. And today I've even been telling them off - honeymoon's over kiddies.
So nice to be in my own bed, eating good food. But they were right at the hospital, it is really tiring being at home. More than I imagined it would be. Three hours in the company of my two and I was ready for bed! In hospital I was having a nap after lunch! No chance of that anymore.
I was repeatedly told yesterday that I had done incredibly well while in hospital, and that the fact that my bloods were improving so quickly was the main reason I was allowed to leave in just over two weeks. Which is really good. Less good is the fact that right at the beginning of all this the nurse said that a lot of people get home, think they've got away without losing hair and it all falls out at home. Obviously mine started to fall out a few days ago, but my word droppage has accelerated the very day I get back! So it is still going, eyebrows still in place though. Phew.
Sunday, 18 March 2012
Escape
There has been quite sudden, definite talks of me going home. My neutrophils were at 0.86 yesterday and generally if they have been over 0.5 for two days that's it you're packed off. Well they have been, and today they should be over 1 which means there is no real reason to keep me here.
The anitbiotics I am on can be taken orally and all my counts are showing signs that any infection has been dealt with. Jo is coming today and I have convinced one of the nurses to ham it up a bit to the Dr about Jo being able to come today only. And the Dr has said that it should be today or tomorrow morning...but what is the point in one more night? They have dangled a carrot in front of me and I'm not going to rest now until they let me out.
The anitbiotics I am on can be taken orally and all my counts are showing signs that any infection has been dealt with. Jo is coming today and I have convinced one of the nurses to ham it up a bit to the Dr about Jo being able to come today only. And the Dr has said that it should be today or tomorrow morning...but what is the point in one more night? They have dangled a carrot in front of me and I'm not going to rest now until they let me out.
Friday, 16 March 2012
2 Weekaversary
Today marks two weeks since I was admitted and it is all pretty good news. Blood tests taken this morning show a neutrophil count of 0.52, up from 0.05 yesterday, which is apparently a steep rise. This is the level at which they start to consider letting you go home. The only thing is one of the tests they did for viruses following my spiky temperature the other day came back positive so I start a new course of antibiotics today. However, providing my bloods stay ok over the weekend and the neutrophils continue to rise I will be having 'discharge talks' on Monday! This means I might be home as early as Friday...only joking it could well be Tuesday I am home. Which is great.
The nurse told me the pattern I have followed during the transplant is text book, and it would appear that my body has (once again) done well in coping with incredibly high doses of nasty drugs. Blood tests show my liver and kidney function to be normal, and if how I feel is anything to go by I feel fine too. I have been warned not to get too complacent about how I feel in here because you do nothing. I don't walk anywhere, my food is brought to me, there are no stairs, etc. When you leave apparently it will be harder for me for a bit physically (because of inactivity) and mentally. Apparently you get something known as 'chemo-brain' where you're not good at coping with multiple stimuli, the example given was kids shouting, telly on and trying to do something at the same time (that's like 14 hours of my normal day). If struggling you need to remove yourself for 'a couple of hours' and gradually reintroduce yourself to the situation. I'll run that one past Jo and see what she thinks.
Decided to go nuclear on the hair, even at grade 4 I was leaving visible little piles of hair around my feet where I sat and it was looking all thin and patchy. So it is now 0.5. Check it.
It doesn't look as bad as I thought it would. I wouldn't choose it but it is ok. Apparently there is a 7 day period of hair loss. My beard pretty much all fell out this morning. At first it was only the left half of my goatee which made me look well stupid so I had to persevere and pull out more of the right side to even it up. I will shave it tomorrow. As for my hair I can see bald patches now, some the size of a pea. nothing massive, however there is still large proportion of it left, but there is still time! The nurse did say though that once your blood recovers your hair starts growing again and she has known patients to be showing new hair growth 2 weeks after transplant, it comes back really fuzzy though so it needs to be kept short for a while.
In other news, my sister and niece have both been tatooed in the name of cancer research. A local tattoo parlour put on a day where you could get a tat of the cancer ribbon, my sister and niece chose the ribbon to be the body of a butterfly, and all the money went to cancer research. And you could get the ribbon the official colour of your chosen cancer and they chose, wait for it...multiple myeloma. Just goes to show the multitude and diverse ways you can do your little bit these days. Respect.
The nurse told me the pattern I have followed during the transplant is text book, and it would appear that my body has (once again) done well in coping with incredibly high doses of nasty drugs. Blood tests show my liver and kidney function to be normal, and if how I feel is anything to go by I feel fine too. I have been warned not to get too complacent about how I feel in here because you do nothing. I don't walk anywhere, my food is brought to me, there are no stairs, etc. When you leave apparently it will be harder for me for a bit physically (because of inactivity) and mentally. Apparently you get something known as 'chemo-brain' where you're not good at coping with multiple stimuli, the example given was kids shouting, telly on and trying to do something at the same time (that's like 14 hours of my normal day). If struggling you need to remove yourself for 'a couple of hours' and gradually reintroduce yourself to the situation. I'll run that one past Jo and see what she thinks.
Decided to go nuclear on the hair, even at grade 4 I was leaving visible little piles of hair around my feet where I sat and it was looking all thin and patchy. So it is now 0.5. Check it.
It doesn't look as bad as I thought it would. I wouldn't choose it but it is ok. Apparently there is a 7 day period of hair loss. My beard pretty much all fell out this morning. At first it was only the left half of my goatee which made me look well stupid so I had to persevere and pull out more of the right side to even it up. I will shave it tomorrow. As for my hair I can see bald patches now, some the size of a pea. nothing massive, however there is still large proportion of it left, but there is still time! The nurse did say though that once your blood recovers your hair starts growing again and she has known patients to be showing new hair growth 2 weeks after transplant, it comes back really fuzzy though so it needs to be kept short for a while.
In other news, my sister and niece have both been tatooed in the name of cancer research. A local tattoo parlour put on a day where you could get a tat of the cancer ribbon, my sister and niece chose the ribbon to be the body of a butterfly, and all the money went to cancer research. And you could get the ribbon the official colour of your chosen cancer and they chose, wait for it...multiple myeloma. Just goes to show the multitude and diverse ways you can do your little bit these days. Respect.
Wednesday, 14 March 2012
Hair today, gone tomorrow
I know I have said this in a previous blog but my hair is now definitely going, I woke up this morning and the back of my head just felt a little sore at the roots, I ran my fingers through my hair and between each fingers was maybe 10 hairs - a good handful shall we say. So I promptly requested a hair cut, and at 9am this morning one of the male nurses gave me a grade 4. I know I was expecting my hair to fall out, but I think I was hanging on to maybe, just maybe it won't. It still might not all fall out apparently...
On the plus side though the worthless David Cameron made a visit to the ward to see the NHS in action before he destroys it. I was going to ask him how he justified cutting off our child tax credits from April, but he was so nice I just told him about my haircut and had a picture.
This has all come after a day where I spiked a temperature of 38.1 yesterday afternoon, a temperature over 38 results in immediate antibiotics (for 3 days) and every kind of test you can imagine. Plus chest xrays to see if there is anything on the lungs. My temperature again spiked last night at 8ish up to 39.1, but this was brought under control with paracetemol and I've been fine since, temperature back to normal. I've been told the xray shows nothing untoward. My blood counts today show I have 'flatlined' with a neutrophil level of 0.02, and I am going to be having a blood transfusion because my red count is so low (this is quite normal). But, bizarrely, I feel better today than I have in ages. I don't feel as tired, I don't have the feverish temperature of yesterday. Plus my stomach is starting to sort itself out, I can eat a meal now and quite enjoy it, which is so nice.
And amazingly, a good friend offered to put a bet on for me at the Cheltenham races yesterday and I went and picked Rock on Ruby in the 3:20 hurdle, which if you've seen the sports pages this morning was a suprise winner. Fifty big ones in the bank which cheered me up no end. I even listened to it live on the wireless and got rather excited I'll be honest.
On the plus side though the worthless David Cameron made a visit to the ward to see the NHS in action before he destroys it. I was going to ask him how he justified cutting off our child tax credits from April, but he was so nice I just told him about my haircut and had a picture.
This has all come after a day where I spiked a temperature of 38.1 yesterday afternoon, a temperature over 38 results in immediate antibiotics (for 3 days) and every kind of test you can imagine. Plus chest xrays to see if there is anything on the lungs. My temperature again spiked last night at 8ish up to 39.1, but this was brought under control with paracetemol and I've been fine since, temperature back to normal. I've been told the xray shows nothing untoward. My blood counts today show I have 'flatlined' with a neutrophil level of 0.02, and I am going to be having a blood transfusion because my red count is so low (this is quite normal). But, bizarrely, I feel better today than I have in ages. I don't feel as tired, I don't have the feverish temperature of yesterday. Plus my stomach is starting to sort itself out, I can eat a meal now and quite enjoy it, which is so nice.
And amazingly, a good friend offered to put a bet on for me at the Cheltenham races yesterday and I went and picked Rock on Ruby in the 3:20 hurdle, which if you've seen the sports pages this morning was a suprise winner. Fifty big ones in the bank which cheered me up no end. I even listened to it live on the wireless and got rather excited I'll be honest.
Monday, 12 March 2012
Neutropenic
I am finally neutropenic. This means my neutrophil count (the white blood cells that fight infection) has gone below 0.5. It is actually 0.07 which means I currently have no immunity whatsoever, which is a frightening thought really.
This marks the start of not being allowed off the ward and of maximum side effects, so it seems to be an odd thing to be happy about; but this is what I've been waiting nearly 9 days for. Plus it shows that the chemo is doing what it's supposed to and killing everything off! The consultants have advised that my blood counts will stay rock bottom for 4-5 days and then my stem cells will start to do their business, my counts will start climbing, and then shortly after that I should go home.
My current level of side effects are bearable, but trying. Eating is still a challenge, and even if I did want to eat my sore throat and aching teeth take quite a bit of the pleasure from the process. Apparently the chemo makes the insides of the teeth swell, and I'm suffering an abscess type of pain. Thankfully at this time the pain is only on the left hand side, and they do provide some brilliant mouthwash which has a numbing effect giving some relief. I continue to suffer with stomach cramps, but again I have been given medication which eases this a lot and I cannot say this is something that bothers me a great deal now.
The other thing that has hit me today is the lethargy. I can't say that any day recently I've woken up with a spring in my step, but today I could have happily laid in bed all day. I was up at 8am, and I did manage some exercises, but by 11am I was lying down and going back to sleep. The funny thing is I don't feel ill with it, I imagined the lethargy would feel like when you have a cold and you feel rubbish, but this is just extreme tiredness. I was literally nodding off in my chair sitting up, but not felling bad with it.
Listen to me whinge on. As an antidote I thought you might all like to see a picture of me with my limp thumb up. So here it is:
This marks the start of not being allowed off the ward and of maximum side effects, so it seems to be an odd thing to be happy about; but this is what I've been waiting nearly 9 days for. Plus it shows that the chemo is doing what it's supposed to and killing everything off! The consultants have advised that my blood counts will stay rock bottom for 4-5 days and then my stem cells will start to do their business, my counts will start climbing, and then shortly after that I should go home.
My current level of side effects are bearable, but trying. Eating is still a challenge, and even if I did want to eat my sore throat and aching teeth take quite a bit of the pleasure from the process. Apparently the chemo makes the insides of the teeth swell, and I'm suffering an abscess type of pain. Thankfully at this time the pain is only on the left hand side, and they do provide some brilliant mouthwash which has a numbing effect giving some relief. I continue to suffer with stomach cramps, but again I have been given medication which eases this a lot and I cannot say this is something that bothers me a great deal now.
The other thing that has hit me today is the lethargy. I can't say that any day recently I've woken up with a spring in my step, but today I could have happily laid in bed all day. I was up at 8am, and I did manage some exercises, but by 11am I was lying down and going back to sleep. The funny thing is I don't feel ill with it, I imagined the lethargy would feel like when you have a cold and you feel rubbish, but this is just extreme tiredness. I was literally nodding off in my chair sitting up, but not felling bad with it.
Listen to me whinge on. As an antidote I thought you might all like to see a picture of me with my limp thumb up. So here it is:
See I don't look that bad, and despite what my wife may tell you, I haven't airbrushed it. I just lightened it up a bit because the photo was slightly dark.
I also snapped the shower head off this morning (don't know my own strength) and by 2pm it was all replaced, pipes an all. I haven't got a bad word to say about the NHS I really haven't.
Saturday, 10 March 2012
In and out
Rather eventful day yesterday, I was moved out of my room on the transplant ward after 1 day and shifted back down to the ward I was on before - albeit in a side room. I have been kept in the room all day as I had an attack of what is called in some parts the 'barcelona squitty quits' on Thursday night, and although this is par for the course on this chemo they need to test it (yes test it and don't ask) to make sure it is nothing contagious. And it takes ages for the results to come back. They have confirmed I do not have C.Diff but not the norovirus (I'm not being sick so I assume I haven't got that), so I am still not allowed to walk around the ward. I can leave the ward though and spread it around elsewhere!
Didn't sleep very well last night due to stomach pains, which I got some medication for, and I won't suffer for as long again before asking. But really I still have very little to complain about in terms of side effects. The main one being the inability to enjoy food in any way. Sometimes I can be hungry and actually be looking forward to something to eat right up to the moment when it is there in front of me then I could happily leave it. It is an odd experience for someone used to eating everything with gusto. I'm happier now I get to pick what I want though, and am really looking forward to fish fingers, chips and spaghetti tonight. Did I mention that?
I shall be getting an injection to boost white blood cell production today. The prediction is my blood counts will be rock bottom tomorrow and Monday (which is when I will feel worst), but within 2-3 days they should come back up again, thanks largely to this injection which the hospital have only started giving to STC patients in the last 2 months. This means you do not stay neutropenic for ages and you recover quicker meaning you can go home sooner. Shows you how quickly things can change in this field.
I have been reprimanded for not giving a shout out to the main lady in my life who, although she hasn't found the time to bring me crisps or anything, is doing the exhausting and thankless task of keeping our house together and running smoothly. So this is big Bo! to Jo. And I will see you tomorrow now that today's visit has been scuppered somewhat!
NB: the TV company have changed their ad to say SOAP rather than SOUP. The power of the blog, this must be more popular than I realised.
Didn't sleep very well last night due to stomach pains, which I got some medication for, and I won't suffer for as long again before asking. But really I still have very little to complain about in terms of side effects. The main one being the inability to enjoy food in any way. Sometimes I can be hungry and actually be looking forward to something to eat right up to the moment when it is there in front of me then I could happily leave it. It is an odd experience for someone used to eating everything with gusto. I'm happier now I get to pick what I want though, and am really looking forward to fish fingers, chips and spaghetti tonight. Did I mention that?
I shall be getting an injection to boost white blood cell production today. The prediction is my blood counts will be rock bottom tomorrow and Monday (which is when I will feel worst), but within 2-3 days they should come back up again, thanks largely to this injection which the hospital have only started giving to STC patients in the last 2 months. This means you do not stay neutropenic for ages and you recover quicker meaning you can go home sooner. Shows you how quickly things can change in this field.
I have been reprimanded for not giving a shout out to the main lady in my life who, although she hasn't found the time to bring me crisps or anything, is doing the exhausting and thankless task of keeping our house together and running smoothly. So this is big Bo! to Jo. And I will see you tomorrow now that today's visit has been scuppered somewhat!
NB: the TV company have changed their ad to say SOAP rather than SOUP. The power of the blog, this must be more popular than I realised.
Thursday, 8 March 2012
Kettle Chips and Lucozade
Feel the need to give a couple of shout outs today. Big thanks go to Jack for coming from London yesterday and bringing me a new toothbrush after I managed to snap the one I had here (apologies I didn't bother to offer any reimbursement for that), and to Neil for a nice lengthy visit tonight and for bringing a huge amount of kettle chips and lucozade, the two things I want most in the world right now (slightly lacklustre offer of reimbursement made for these, not accepted). And finally to Buff for washing, ironing, folding and returning my dirty pants. Thank you all.
I am still finding getting through meals a massive struggle, and I feel like I'm craving childhood food suddenly. I have been put onto a high protein diet as I have lost some weight since admission. This is nothing for anyone to worry about but they don't want me to lose any more. I am eating everything they serve me up, but the dietician has said that the body can be using up to 40% more energy dealing with the transplant, and as the portion sizes here are maybe half what I'd eat at home I have to eat more. And this will take the form of more snacks, more crisps, more flapjacks, protein shakes, anything to get calories in - a licence to eat what I want! This is the one time I can sit here and eat a whole 150g bag of kettle chips and wash it down wih Lucozade knowing it is good for me.
They've given me a special menu where I am allowed anything off of it, any day, so no more having to have what is on the standard ward menu. I looked through it and saw that I could have fish fingers, chips and spagetthi hoops and now that is all I want. You can't mess with that, I keep thinking of how the edges of the chips will go a bit soggy in the tomato sauce, which is really sweet and gooey and then dipping my fish finger into ketchup...you get the picture.
Having moved into my own room I have to say considering what I'm about to go through this is a much more appropriate place than the ward for me. I do not have the company but the level of attentiveness from the nurses is so much higher because there are just more nurses to patients, and they are so well set up for transplants here (it being the transplant ward) that they are much more in tune with my needs, so I have to say I am glad to be up here now. And filling my days is not going to be that hard: I have visitors every day from now until Tuesday, and I'm only half way through the first season of Sopranos so there is plenty more to go.
Neil also told me that a few of the bods from work (and someone from work's mum, you know who you are) have been on and sponsored him, so thank you all for that. It is greatly appreciated. Keep it coming!
I am still finding getting through meals a massive struggle, and I feel like I'm craving childhood food suddenly. I have been put onto a high protein diet as I have lost some weight since admission. This is nothing for anyone to worry about but they don't want me to lose any more. I am eating everything they serve me up, but the dietician has said that the body can be using up to 40% more energy dealing with the transplant, and as the portion sizes here are maybe half what I'd eat at home I have to eat more. And this will take the form of more snacks, more crisps, more flapjacks, protein shakes, anything to get calories in - a licence to eat what I want! This is the one time I can sit here and eat a whole 150g bag of kettle chips and wash it down wih Lucozade knowing it is good for me.
They've given me a special menu where I am allowed anything off of it, any day, so no more having to have what is on the standard ward menu. I looked through it and saw that I could have fish fingers, chips and spagetthi hoops and now that is all I want. You can't mess with that, I keep thinking of how the edges of the chips will go a bit soggy in the tomato sauce, which is really sweet and gooey and then dipping my fish finger into ketchup...you get the picture.
Having moved into my own room I have to say considering what I'm about to go through this is a much more appropriate place than the ward for me. I do not have the company but the level of attentiveness from the nurses is so much higher because there are just more nurses to patients, and they are so well set up for transplants here (it being the transplant ward) that they are much more in tune with my needs, so I have to say I am glad to be up here now. And filling my days is not going to be that hard: I have visitors every day from now until Tuesday, and I'm only half way through the first season of Sopranos so there is plenty more to go.
Neil also told me that a few of the bods from work (and someone from work's mum, you know who you are) have been on and sponsored him, so thank you all for that. It is greatly appreciated. Keep it coming!
Wednesday, 7 March 2012
A Room!
Hot of the press: I have just been told that I will be moving into a side room on a completely different ward which is all single rooms up on the top floor.
Having made it quite clear to the nurses at the outset that I wanted to move into a side room I had to confess today to one of them that I have actually quite liked being on the ward and don't really want to go. But for clinical reasons I have to so I don't get a choice. I worry slightly having had the activity of the ward that a side room will be a little quiet...
Bizarrely I found out today when inquiring about whether I could go for a walk outside the ward, that my neutrophil count had gone UP overnight, which can happen but not very often. The nurse told me I might not go neutropenic at all, and she had a case recently where a myeloma patient showed no symptoms (including no sickness) during the SCT and has now been in remission for 6 months. So the fact that my neutrophil counts haven't gone below 1 isn't a cause for concern regarding the effectiveness of the treatment. But I still have a few questions for the doctor about this.
Went for a walk outside which was lovely, but decided to come back up to the ward via the stairs as the queue for the lift was massive. Bad decision, I had a pulse in my head so strong I nearly passed out! But it must be a good thing to get blood pumping every now and again.
Having made it quite clear to the nurses at the outset that I wanted to move into a side room I had to confess today to one of them that I have actually quite liked being on the ward and don't really want to go. But for clinical reasons I have to so I don't get a choice. I worry slightly having had the activity of the ward that a side room will be a little quiet...
Bizarrely I found out today when inquiring about whether I could go for a walk outside the ward, that my neutrophil count had gone UP overnight, which can happen but not very often. The nurse told me I might not go neutropenic at all, and she had a case recently where a myeloma patient showed no symptoms (including no sickness) during the SCT and has now been in remission for 6 months. So the fact that my neutrophil counts haven't gone below 1 isn't a cause for concern regarding the effectiveness of the treatment. But I still have a few questions for the doctor about this.
Went for a walk outside which was lovely, but decided to come back up to the ward via the stairs as the queue for the lift was massive. Bad decision, I had a pulse in my head so strong I nearly passed out! But it must be a good thing to get blood pumping every now and again.
Tuesday, 6 March 2012
Telly
It costs £35 to get a weeks worth of telly beamed to your bed. I thought this was pretty steep until I saw their advert (which comes on the TV screen at 7am and shines in my face) and I think I might just invest.
It is amazing what they can do these days with modern technology.
We have found out this morning that the fellow brought in yesterday in the bay across from me has flu! He has now been transferred to a side room (probably the one ear marked for me damn it) but nobody told us anything yesterday and there are three people in here with compromised immune systems. I even helped him plug some stuff in yesterday, and didn't think to wash my hands after.
So we have been confined to the room this morning, all the nurses have come in with face masks, gloves and aprons, which just looks really ominous, while all us poorly folk are sat there with no protection whatsoever. We have been given additional medication to protect us from the potential catching of flu. Crazy.
Monday, 5 March 2012
Lovely visit
Day 2 of transplant and the best way I can describe the way I feel is it's like I've got a perpetual bad hangover. Symptoms are:
Just had a visit from the two girlies and Jo and Buff, very nice if not a little short - although there is a time limit with the kids when in a restaurant seating area and you've decided not to strap them down. And I think I gave in and put money in the Postman Pat ride too early and so created all sorts of problems for us. But it was lovely to see them before I start this 2 weeks of down turn and recovery. Got a couple of days to fill now without visitors, hello Sopranos.
- feeling on the verge of being sick but never quite getting there
- a bit tired and if I gave in I would just watch comedy DVDs back to back
- any moving around leaves me short of breath and wanting a little sit down
Just had a visit from the two girlies and Jo and Buff, very nice if not a little short - although there is a time limit with the kids when in a restaurant seating area and you've decided not to strap them down. And I think I gave in and put money in the Postman Pat ride too early and so created all sorts of problems for us. But it was lovely to see them before I start this 2 weeks of down turn and recovery. Got a couple of days to fill now without visitors, hello Sopranos.
Saturday, 3 March 2012
Stem cells in
Today is known as day zero, the day I get my stem cells back. It happened today at around 13:30, and was another non-event. I was told I might get tickling in the throat, a funny taste in my mouth...I didn't get any of this, although Jo reliably informed me that my breath smelled like 'essence of sweetcorn'. It may be while before she can kiss me or eat sweetcorn.
It was all over in 30 minutes, the 2 bags of pinky cells were pulled out of a freezer container by the nurse with big industrial gloves on, with liquid nitrogen evaporating off them. Then dumped in a warm bath (looked a bit like the things fancy chefs use on the Great British Menu to poach venison) for a few minutes then dripped into me via the central line. The stem cells were, amazingly, big enough to see with the naked eye and you could watch all these little red circular dots flowing down the tube into me. Incredible really.
I'm glad to report I'm not feeling sick anymore, so I was able to eat dinner without much effort (lunch was really hard work today). And I'm looking forward to a better night's sleep, I feel very tired but that is all.
Also, another bit of good news is one of the senior nurses said it was 'unlikely' that my eyebrows would fall out, and maybe not even my beard just the hair on my head...I'm not getting too excited as every statement like this is followed by 'but everyone's different'. Watch this space.
It was all over in 30 minutes, the 2 bags of pinky cells were pulled out of a freezer container by the nurse with big industrial gloves on, with liquid nitrogen evaporating off them. Then dumped in a warm bath (looked a bit like the things fancy chefs use on the Great British Menu to poach venison) for a few minutes then dripped into me via the central line. The stem cells were, amazingly, big enough to see with the naked eye and you could watch all these little red circular dots flowing down the tube into me. Incredible really.
I'm glad to report I'm not feeling sick anymore, so I was able to eat dinner without much effort (lunch was really hard work today). And I'm looking forward to a better night's sleep, I feel very tired but that is all.
Also, another bit of good news is one of the senior nurses said it was 'unlikely' that my eyebrows would fall out, and maybe not even my beard just the hair on my head...I'm not getting too excited as every statement like this is followed by 'but everyone's different'. Watch this space.
Friday, 2 March 2012
Halfway done
Well the chemo is done, it's amazing really that such a huge dose of chemo (which will wipe out bone marrow, leave me sick for two weeks, make my hair fall out, but I must remember could also leave me well for a good long while) was delivered to me in 30 minutes in a ridiculously small bag (maybe the size of a Gideon bible that you got in school) of clear liquid. I have been given anti-sickness medication and loads of fluid via IV which means I'm up to the loo loads and I will continue to get fluids dripped into me all night.
Then tomorrow I will get my stem cell infusion around lunchtime. Currently I feel the same as I did this morning, which is fine. I have been assured this will change in the next week.
I have had my hospital tea which was ok considering my choice was cottage pie or vegetable noodles with baked beans or mashed potato. You may be surprised to note I didn't go for that all time favourite of veggy noodles and baked beans. I don't want to be too down on hospital food I've got two weeks of it left. That was another thing: I found out I could be out in 16 days rather than 3 weeks which I thought was the minimum, which is good news. Better news than finding out my recent bone marrow results showed the myeloma on the rise again, which is disappointing but really neither here nor there considering they are killing it all off anyway. Would have been nice to see it lower than 30% though when they were aiming for around 10% plasma.
Yesterday when I was walking back from Tesco a youngish lad maybe 20-25 was walking ahead of me on crutches. He stopped quite a way in front of me then as I approached started to tell me how much he hated his crutches. He then continued to moan about his cast and dislocated knee. Now, I have pondered before what I would do if someone (particularly someone I didn't know) started to whinge about a health issue which was significantly less of a problem than my own, in a slightly self important way that suggested that they were so much worse off than me. Would I say 'yes I completely understand last year I fractured my neck and had to have part of my spine replaced and I'm going in to have a stem cell transplant on Friday to tackle the cancer responsible, byeeee'? That would get 'em.
Well, in 100 yards I found out that he has had three casts (one was too tight, one was too loose and this one was just right), the cast goes above the knee which means he can't bend his leg, he has had the cast for 6 weeks and there is still another 3 weeks to go and he has to go to a different hospital now because the department at his current hospital was too busy (both hospitals are equidistant to our place of residence). What did I say? 'Oh that's awful...does it get itchy underneath?', 'Ooooh yeah' he said, and I shook my head, wished him luck and made sure that at the next available opportunity I walked a different way to him. He was a nice fellow but just a bit boring.
Then tomorrow I will get my stem cell infusion around lunchtime. Currently I feel the same as I did this morning, which is fine. I have been assured this will change in the next week.
I have had my hospital tea which was ok considering my choice was cottage pie or vegetable noodles with baked beans or mashed potato. You may be surprised to note I didn't go for that all time favourite of veggy noodles and baked beans. I don't want to be too down on hospital food I've got two weeks of it left. That was another thing: I found out I could be out in 16 days rather than 3 weeks which I thought was the minimum, which is good news. Better news than finding out my recent bone marrow results showed the myeloma on the rise again, which is disappointing but really neither here nor there considering they are killing it all off anyway. Would have been nice to see it lower than 30% though when they were aiming for around 10% plasma.
Yesterday when I was walking back from Tesco a youngish lad maybe 20-25 was walking ahead of me on crutches. He stopped quite a way in front of me then as I approached started to tell me how much he hated his crutches. He then continued to moan about his cast and dislocated knee. Now, I have pondered before what I would do if someone (particularly someone I didn't know) started to whinge about a health issue which was significantly less of a problem than my own, in a slightly self important way that suggested that they were so much worse off than me. Would I say 'yes I completely understand last year I fractured my neck and had to have part of my spine replaced and I'm going in to have a stem cell transplant on Friday to tackle the cancer responsible, byeeee'? That would get 'em.
Well, in 100 yards I found out that he has had three casts (one was too tight, one was too loose and this one was just right), the cast goes above the knee which means he can't bend his leg, he has had the cast for 6 weeks and there is still another 3 weeks to go and he has to go to a different hospital now because the department at his current hospital was too busy (both hospitals are equidistant to our place of residence). What did I say? 'Oh that's awful...does it get itchy underneath?', 'Ooooh yeah' he said, and I shook my head, wished him luck and made sure that at the next available opportunity I walked a different way to him. He was a nice fellow but just a bit boring.
Admitted
Been admitted to hospital today. Yesterday was a bit of a rollercoaster as I had to ring the ward at 11am to see if there was a bed for me. If there wasn't I would have to ring the next day and on like that until I got in. This is a horrible way of doing things if you ask me but the nurses haven't got time to ring round and things change so quickly as everyone is so ill (as I was to find out).
I was told at 11am that the bed manager would ring within an hour as the nurse was not sure. I had to take the girls to the doctors and have fish and chips (this could be my last non-hospital lunch for a while) so it was half one by the time I rang to chase it up. I was then told I had a bed but the nurse needed to check what time I could come in, the bed manager was on the phone. At this point I realised that I had saved all my nerves about the transplant for this precise moment: the moment someone confirms 'yes this is going to happen now'. A little like I completely lost it about 30 minutes before I got married. But then, bizarrely, the nurse on the phone said 'oh, I've just been told there is an emergency so that bed is gone. I'm so sorry, I'm not sure what this means for you'. And that was that. I asked for someone to call me just to confirm I wouldn't be going in that afternoon. I assumed at this point I wouldn't be.
At around half 3 I called again just to get an update on whether or not I would be going in. I was then told there was a board meeting to decide on priorities, someone would ring back in half an hour. I was called back to be told yes there was a bed could I come in? And after all that I had to say no! With the kids there it was half four, time for tea then bed. So I arranged to turn up at 9am today which gave me another night at home and doesn't affect the planned treatment schedule. Had a Chinese takeaway (note fish and chips for lunch; this is not recommended nutritional preparation for a stem cell transplant).
So I'm here on the ward being pumped with fluids in preparation for the melphalan which is coming at about 12:30. The hospital currently has restrictions on visiting due to the norovirus. These are 3-5pm and 7-8pm so I don't know what that means to all the people planning evening visits, hopefully things might change if I get a side room. Fingers crossed.
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