Tag Archives: Haematology

Grafting

Four weeks ago, 31 days ago to be precise, I swallowed what *might* be my last ever Ciclosporin tablet. It was a noteworthy moment. It was more than that, it was a milestone that warranted me taking a badly lit photograph to commit said moment to my iCloud memory. 
 
It was a milestone that was a long time coming and one which came with something I have been yearning for. It came with a deadline. At least, it came with something that is as close to a deadline as I can get. If I learnt anything last year, definite deadlines and timescales rarely exist in the weird and wonderful world of myeloma. So, when the Medically Trained Person said that if I was going to get Graft Versus Host Disease, it would happen within six weeks of me coming off the medication, I finally had a date in my diary. Additionally, as you do need to get all the relevant information, I was told that within the six week window, I would be most likely to show symptoms at the two week mark. 

If the odds were ever in my favour, I had an unpredictable Christmas ahead of me. I had something that could almost be called a plan. I had my date. A date to look forward to and a date dread. At least, that is how I felt for the first fortnight.

Four words have been stuck in my head and followed my thoughts from the moment I knew I was going to have a donor transplant. Graft Versus Host Disease, known as GVHD to save my fingers. It might be the one medical term that is easy to pronounce, but the mechanics of it, the good and the evil of it, waiting for it, are anything but easy. 

From the moment my sister’s cells entered my body, not a day has gone by where I have not replayed conversations in my head telling me that a transplant will be (much) more successful if one gets GVHD. That a lasting remission is most likely to occur if one gets GVHD. That one only wants minor GVHD and not severe GVHD. GVHD can be worse than the cancer the transplant was intended to treat. GVHD can kill you. My post transplant world has been categorised by these thoughts and unbearable waiting to see which one applies to me the most. 

Another thing I have learnt in the most painstakingly slow way, is that the symptoms for GVHD are so broad that it has made it impossible for me to trust my body. Let’s face it, before my last transplant I already had reason enough to not trust my body. It has left no room for rational thinking. Everyday, multiple times a day, with each bowel movement, scratch, headache, bout of indigestion and shooting pain, I would wonder whether it had finally come. It did not. It was like failing my GCSEs on a daily basis. 

I woke up and continue to wake up everyday and my body does not feel right, and I do not know the cause of it. One could say I ‘do not feel right’ because I am recovering from a transplant, but I want to know more. I need to be reassured and I cannot do it myself because my body does not feel my own. Maybe I should ask Big Sister. I am 98% her now after all…This constant questioning of the unknown something, is one awful, inescapable disease. Half hypochondria, part anxiety with a sprinkle of depression and that’s before we get to the diagnostics of the physical ailment. It is a weight far beyond my actual sizeable girth and one that has often been too much to bear. Telling myself that the last 150+ days have been about recovery and not failure has been my full time job. I could not talk or write about it through fear of jinxing my snail-like progress. 

My long standing mental list of acceptable GVHD symptoms consists of oesophageal problems, diarrhoea and a rash. By December, despite developing a bottom sponsored by Andrex, the Medically Trained People told me that I had not developed anything from my list. As unpredictable and unformed as my stools had become, the fact I had not lost any weight, led the Medically Trained People to conclude it was not bad enough to warrant the GVHD label. During that conversation, the Medically Trained Person started to talk about the prospect of not getting GVHD. I left St Bart’s dejected. I felt unwell, just not the right sort of unwell.
If I thought that my days post transplant on Ciclosporin were difficult, the booming ticking clock that has been everyday post 15 December has been something all the more sinister. The first day free from the nightmare inducing horse pills, felt promising. My stomach was worse than usual and I could not stop scratching my neck. Both things soon subsided and realistically, were most likely a symptom of my nervous energy.

Over the next fortnight, I felt awful. Each 24 hours felt like double that. I was impatient. I repeated potential outcomes over and over and over again. I am embarrassed to admit that I occasionally gave in to the Bad Thoughts. The more I waited for something conclusive, for my pot to boil, the more I predicted failure. Worse than failure, a few times, I concluded that not getting GVHD which would shorten any remission, would be the easiest outcome for me. It would mean that I did not have to live with the unpredictability of waiting for a relapse and I would not have to deal with the uncertainty that awaits me when I attempt to rejoin my life. The bottom line was that at least that outcome would have a definite ending…
Then do you know what happened? 

Two weeks to the day after I took my last pill, I got a mouth ulcer. By the end of that day, I had two, and then by the following day, my mouth felt like sandpaper. It still feels like sandpaper. I hoped, and a quick Google search made me hope that little bit more that the cause of my pus filled mouth was the elusive GVHD… One week after that, I opened my mouth to a Medically Trained Person and do you know what she said? 

Read between the lines.

In that single moment I went on a metaphorical diet and I exhaled. I text members of my Support Network an update. I phoned Mamma Jones with the news, to which she responded nonchalantly, “I knew it”. Most tellingly, I left the hospital with my smile intact despite having to wait two and a half hours to rehydrate to allow for my bloods taken.

Despite allowing myself to bask in my relief for a day, I’m not buying any party poppers or downing champagne yet. The champagne would be wasted on my rotting mouth anyway. The six weeks are not up yet and although I am now on medication to treat my mild GVHD, my fears remain. No longer am I waiting to get GVHD, I am now hoping that it does not worsen. More hypochondria. My liver has not been functioning as well as it ought and although I was told not to ‘panic’ about my results, I challenge anybody in my position not to do just that. After all, I may have finally got what I wished for, but I still do not have a body I can trust. 

As I said at the start of this, there is a very fine line between good and evil. I have two more incredibly slow weeks of trying to stay on the right side of it. 

And then, what the hell is going to happen? 

Patience is not my virtue.
EJB x

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Single Figures

In my post transplant world, I have rarely thought about that pesky thing known as my paraprotein level. In the months prior to my transplant I rarely thought about that pesky thing known as my paraprotein level, for I was going to get the transplant anyway.

My blood is stubborn and so is the paraprotein and no matter what drugs I was given, it did not want to fall that significantly, oh no, it wanted to plateau. Plateau. If it was not plateauing it was increasing with aplomb. The bugger.

Way back when, I was told that my transplant would not bring me the remission I so wish for, and that the pesky thing known as paraprotein would remain. I am pleased the Medically Trained People told me this, for it meant that I could block out all the white noise to the contrary. I was told, that given my pre transplant level, to expect something around 10. And that is what I expected.

Today, I opened my post to find my post appointment letter and discovered that my paraprotein has indeed reduced. The miracle did not happen and it has not reduced to nothing. Damnation. Obviously. It has however, for the first time since we discovered I had one, a fact that is important to point out because there was indeed a period in my life where I did not have one, my paraprotein level has fallen to a single figure. I am so used to the template of the summary letters, that I thought the formatting was wrong, until I realised that there was missing a digit next to the word ‘paraprotein’.

My paraprotein is currently 8.

I do not know how I feel about this. At a guess, I would say that I am relieved that it has fallen below ten and my transplant achieved something, and on the other hand, I would say that I was disappointed that I did not get a miracle.

EJB x

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Expecting the Expected

It is strange to be surprised by the expected, but I am. I knew that I was going to have a dodgy tummy, nausea and fatigue, I have been preparing for it for so long, I was almost bored of it, but now I am in it, I can wholeheartedly say it is nothing like I expected it to be.

I think my current situation, is one where to truly understand it, one has to live it. Saying the words, will not make you comprehend the force. And let’s face it, there is a lot of force. No amount of preparation is going to make a stomach cramp any easier.

On Sunday afternoon, when the diarrhoea started to come, I sat on the toilet and thought to myself, that if that was it, it was going to be easy. Clearly, that wasn’t it. Fast forward a few days to last night, when I was forced by my body to have my tenth poop of the day, whilst doing that, I developed a cramp that was so hideous, I vomited (500ml by the way) and sweated. It then took, three more visits to the toilet, five hours, IV anti sickness, IV fluids, oral anti sickness and stomach pills and oramorph for the pain to subside. Until that pain did subside, I spent that time awake, unable to do or say anything, lying on my bed thinking, this must be the worst I am going to feel. It must be the worst right?

I do not know if I have yet hit the bottom. I currently figure that my diarrhoea and vomiting cannot worsen, but my fatigue can, if I continue to lose fluids at the rate I am losing fluids. That’s basic science right?

I am going to try and explain my current role in this world as Green Excrement Girl, but I am not doing it to gain your sympathy, it is just to explain what this feels like. I’m having to think of it in much the same way; if I start to feel sorry for myself, I become a martyr to it. I am no martyr. Right now, this is my job. So, as well as expecting the expected, I have to accept it too. I am just trying to ride the most unpleasant wave that has ever existed.

Since Sunday evening, I have not been able to hold down any liquids or foods that have entered my body. The Medically Trained People were trying to get me to drink 2.5 litres a day, but it was decided yesterday, that attempting to do 0.5 litters caused so much discomfort, that I did not need to do it. I really am trying, and yesterday, I even felt hungry, but after a few sips of water, spoonfuls of mashed potato, the mixer in my stomach started churning and I had to run to the toilet to deposit it. This happens whenever I drink or eat. On Monday, it was worse, because I ate much more, thus the sheer volume, was, well, impression. Mamma Jones was soon sent out to buy moist toilet paper. Practical. I do not want to irritate any piles.

Managing the diarrhoea is one thing, but it is not my only symptom or problem.

Practically, it requires me getting out of my bed on the lefthand side to unplug my pump, wheel my fluids and myself round the foot of the bed, navigating wires and other obstacles, past the sofa, to the bathroom. On competition, when I am back on my bed, the pump needs to be reset, because it’s battery is broken. I taught myself how to do this yesterday, because I could not stand all the beeping.

Physically, the diarrhoea is accompanied by nausea, which until last night, had just been nausea, and not full scale vomiting. If you were wondering, the vomit, was the same colour and consistency as my poo; slime green. So yes, nausea, it is a bugger. I feel constantly sick. There are scales to it, but in short, there is always a feeling of sickness around as is its friend, the stomach cramp. The stomach cramps, for ladies, feels like the worst sort of period pain you will ever have, at it’s worse, I imagine it is like giving birth. I actually think this. It constantly feels like they is a wooden spoon, in my stomach making potions, occasionally making sure it gets all the ingredients by scraping round the sides. Last night, I knew there were drugs in me, because my mind started to create stories for what was happening in my stomach. I kid you not

So, as somebody has had a nasty bout of food poisoning will know, because of all of the above, I feel weak. I am dehydrated, my blood pressure is low and I constantly tired. Yesterday, because of the dehydration and the byproduct, dizziness, I had to sit on the toilet for ten minutes longer than needed, to ensure I would not faint on the long walk back to my bed. Again, with that sort of activity, I am running a constant risk of piles. I am talking grade 4 level here.

Above are my main adversaries, but I also continue to fight a fever, a toothache, a sore throat and ugliness. Oh, and my neutrophils are flat.

Fortunately for me, the Medically Trained People are marvellous, and more crucially, they have seen everything I am experiencing before. The Doctor explained yesterday that they can give me so many more concoctions to get me at my most comfortable, she also said, which I guess is a good thing, nothing is happening that should not be happening. I am no medical marvel.

The difficult thing with all of this, is that nobody knows for certain if this is going to work. I have seen a lot of comments on the blog mentioning the word ‘remission’ and I have been asked about it much more than that in person, but the truth is, my transplant is unlikely to give me that. Everybody’s experience is different. It’s my best chance. The reboot is what I need. Back in January, when I was sitting on my paraprotein level of 20, I was told that it would be highly unlikely to walk out of a transplant with a level of zero. At my last Clinic Appointment, the Senior Medically Trained Person said that a decision will be taken after my transplant as to whether I have to start a new course of treatment straight after or if they are just going to let my body be for a bit. It could be that my body does surprise everybody, but I think we all need to be realistic about what my transplant is going to achieve. If the last 11 months has taught me anything, it is that My Myeloma is one stubborn arse. Time will tell. I am going through this, putting up with this, because somehow, maybe not immediately, I know it is going to give me a holiday, but more importantly a return to normality.

As for today, I am hoping for a better one. Late last night, my stool sample came back and I do not have an infection, which means that I can take Imodium. Yes. Imodium. The day might not be better, as I was threatened with having to measure all my outgoings yesterday, which sounds fun. Time will tell I guess.

Today is Day 7.

EJB x

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Community

Today, I find myself in Ambulatory Care for longer than I anticipated because the nurse has decided to give me some fluids whilst I wait to see the on call doctor. I thought I would be in here for 30 minutes maximum today. I was wrong.

The other people sitting with me, did not think like me when they walked from the Cottam Rooms this morning. They came prepared for the long haul. Everybody makes polite conversation in here, even if it is just a smile. I look at all the other patients and think, we’re in this together, but I am more important. It creates a nice sense of community to be sure.

I have said this to the Medically Trained People, so I have no problem with saying it here, the communal space of Ambulatory Care could be larger. In fact, I would go as far as saying it is cramped. I could touch the man to my left and I do think he would appreciate it because he is sleeping.

As I sit here, on a chair opposite the nurses station and to the right of the little reception desk, I am in the company of four other patients, all men, all older than me. We are close enough for me to hear their date of births, and I can confirm that the person nearest to me in age is 14 years older.

I recognise all the people from the hotel. The one I know the best, because he is the chattiest, is to me right on his mobile phone. I do not know why, but he reminds me of Roald Dahl, is it because his standard uniform is of somebody about to go on a modern safari? He might me South African. He is not having a transplant, I am not sure what he is in for, but he seems to be holding up much better than me. He ate at Wahaca yesterday, it’s not proper Mexican food you understand but it is an acceptable European fusion. He’s playing on his MacBook. He likes to Skype his wife, apparently. As well as reminding me of Roald Dahl, looking at him makes me want to watch the first three Indiana Jones movies.

So Roald Dahl/looks incredibly like a photograph I once saw of my great grandpa, is sitting closest to the entrance. He is getting a bag of something the size of a cows udder.

To the left of me, essentially next to me, is a trendy man in his forties. I saw he is trendy because of the people I have seen him with. One of them wore tights and Dr Marten’s on Wednesday and is a fan of bleached denim. Crazy. Today, he is wearing black jeans and a navy jumper. He’s very tired. I know that because I heard him telling the nurse he was and he is asleep as I type. He does not want to go into the hospital yet… I get the impression he has been here before. He knows all about my stools because the open plan setting does not offer enough privacy for me to have had that conversation privately. Not that I care. They offered me a private room; I declined.

He might not be asleep actually, he could just be pretending because I just saw his left leg move. To be honest, if I had to have had the conversation with the camo shorts with a red flannel shirt wearing man to the left of him about IT sales, I would have pretended to sleep. After 5 minutes of listening to their convention, I had to reach for my earphones. Poor man.

The boring man, sitting in the corner, is about to leave. His wife has been sitting with him the whole time and has not said a word the entire time I have been here. Maybe she doesn’t like IT sales. Hang on, she just said thank you to the nurse. They are off. His feet are swollen I note, so it is good he just walked over to the bin and disposed of his Lucozade bottle. As they walked out, a guest belonging to the sleeping man arrived. It turns out, he was actually asleep. She has lovely hair. She looks sad. I guess she is sad, because I saw the man on Tuesday for the first time and I can tell he looks worse than he did then. For ‘Lolita’ reading girl with the nice hair, the visible deterioration must be difficult.

The man who was in the far corner, also with a wife, has also left. He did not smile. I suppose one could say, if you are stuck in a artificially lit, white room on a Sunday, you probably do not have that much to smile about. I do not think like that of course. I am peaches and light. He looked like he was wearing a dressing gown, but it was actually an open blue shirt.

There are 3 nurses in here today, treating us and a further person in one of the private rooms. The room seems cluttered. I do tend to see more clutter when I am tired. There are silver trollies and stools as far as the eye can see, a blood pressure machine in the middle of the floor, and as the three of us left in here are on IV meds, we’re attached to those things on wheels, which are taking up more room as they sit to the left of our chairs.

Why am I the only one who enjoys the reclining facilities on the chairs? Fools.

Roald Dahl has opted to eat lunch. I was going to try it, but realised that I did not want my one meal of the day to smell like baby’s sick. I consequentially feel sick. It is just the two of us now…

I have to go and give them a certain type of sample now, I hope it does not put him off his lunch.

I’ll try and be subtle.

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4.2 Million

Have you ever wondered what 4.2 million stem cells looks like? Of course you have. We all have. Well, wonder no more. Today, is a lucky day. It is your lucky day, for below is a bag of 4.2 million stem cells. To be clear, I am talking about my stem cells.

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Good one, Body. We get to go home now.

In case you are wondering what the hell I am on about, I needed 4.0 million.

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