Tag Archives: autograft

How You Doin’?

How are you? How you doing? Are you okay? How are things? What’s going on? What’s up? How you diddling? Are you alive? Whaa gwaan?

The above are all questions I have had the good fortune to receive over the last few weeks, even the last one is real. As well as being a fine example of British manners, even the one that is an assault on the English language; I have considered each question to be a subtle reminder that I am failing miserably to keep my  blog up to date. Read between my non-existant lines and you’ll may discern a lack of energy despite the will, but that will only get you so far in coming to grips with the gravity of the question; how are you? 

In my silence, I have discovered that not only are there are a number of ways in which people can ask how I am coping in my post Transplant Number 2 world, but there are a number of ways in which I bombard myself with the same questions. I badger myself. I frequently find myself pondering  how I am, wondering if I am progressing and asking if this feeling will ever end? I am yet to receive, no matter the turn of phrase, a satisfying answer to any of my questions. One sided conversations are almost always, frustratingly unsatisfying.

There are many, many variations of answers to these questions about my mind, body and soul. As if it needed to be said, My Myeloma is anything but clear cut. My answers will change depending on the day it is asked and sometimes, there will be multiple, almost contradictory answers within a single day.  I can be something quite different at 16:00hrs to something I was at 15:55hrs. With regards to this blog, I have decided to provide all the answers in the form of a waffle. Mind, body and faeces. 

To get a grasp on how long it has been since my sister’s stem cells entered my body, to assess the progression, I  referred to something called a ‘calendar’ and discovered that it is 55 whole days since my transplant was completed. It does not feel like 55 days. 55 days of sleep, the hospital, waiting, vomit and poo. It doesn’t not feel like 55 days either; I just feel like I am existing in a volatile limbo where having a concept of time is an unnessary evil. This recovery nonsense is nothing but incredibly slow, and I see it as fortunate that I cannot remember one day from the next and last.

I am still nowhere near answering the questions laid at my door. Other than the ‘I don’t know‘ option, the short answer to these questions and the official party line is that I am  “doing as well as can be expected at this time; and there is nothing to worry about.” Shortly after my discharge from hospital, my transplant was described as “uneventful”.

πŸ‘πŸ‘πŸ‘

Well, that’s great then. I can wipe my brow, exhale with relief, keep my mouth shut and just continue to watch as my body learns to accommodate it’s new DNA…

Only joking, I may now partially be made of my sister, but this blog would not be mine if I just stuck to the short answer. Grab a cup of tea and put your feet up.

The long answer, the answer I prefer to give when circumstances allow, does begin with an “I don’t really know”, then it is immediately followed by one, big, fat “but…”

Apart from the words in my short answer, medically, I do not know how I am. I do not know how the transplant is progressing and I have absolutely no idea when I will know if the treatment has been successful. I knew the transplant would be followed by months of uncertainty, and I prepared myself for that, I just did not know it would be so difficult being completely blind in the matter. It takes an awful amount of mental discipline to stop myself from cracking under the pressure of the unknown, and the silence. 

Medically, I have been told not to worry about my case. My case. I have been told that it is discussed by the Medically Trained People weekly and I know that I should be assured by that. I know that I have no other option but to put my faith completely in the process and the people coming up with my care plan. I do not know how my blood results have changed since my discharge and thus my answers to these all important questions, cannot be based on any scientific or research led evidence, which is an adjustment for me. How I feel, and how I am, is completely separate to my results. 

The official answer, although it is an important and positive one, fails to adequately describe how I feel on a day to day, and week by week basis. In the absence of any clear medical conclusion, I can merely describe what I feel is happening to me and hypothesise what it can all mean. 

I am tired. I know I am always tired, but this post transplant fatigue is different to my previous dalliances  with fatigue. It’s almost always present and there is no visible pattern to when I am going to have more or less energy. I generally, just go to bed one day hoping that the next day will be better. Sometimes it is better, and sometimes it isn’t. Today for example, I have been able to write this blog, do some chores and potter round Marks and Spencer. On Monday on the other hand, I could barely get out of bed, I most certainly could not leave the house. 

Fortunately, I am experiencing less days like Monday and more days like today than I was seven weeks ago. How do I know? People tell me so, because I sure as hell do not have the memory recall, nor the distance to see that sort of progress myself. Okay, I can see it a little bit. I’m not limited to just five minutes of activity a day anymore. I do not know what my limit is, but there definitely is one.

I have surpassed some of my Getting Better Milestones. The first meal I made myself from nothing but ingredients occurred some three weeks ago, and I am now able to prepare at least one such meal a week. I have taken myself to the cinema and I have been on a train. The last train I got did not result in me immediately having to go to bed upon reaching my desination. These things may sound small, but to me, they are fine examples of me clawing back some freedom. I am yet to ride a bus, I do not feel fully confident in sleeping alone and I panic at the thought of a crowd, but I know that these milestones too, will be past eventually.

Before my treatment started, I was told that the recovery differed from that of an autograft. I was told that my recovery would not be one of slow and steady improvement, but one of unpredictable peaks and troughs. It is a warning that haunts me. My day-to-day ability to function my vary, but I dare say that if you saw me weekly since my transplant, you would say that I have shown gradual improvement week on week. I have gone from being able to do nothing but wash myself seven days a week, to be able to hold conversations longer than an hour at least four days a week. My fear, and thus my reluctance to comment on my health and my progress, stems from me  waiting for the fall/s. The fall that everybody warned me of, but nobody can or is willing to predict.

The fatigue may be my biggest drain and the headlining side effect, but there are more and they seem to all feed into each other. Are they a result of the transplant, a side effect of the 40+ tablets I take daily, a symptom of the all important Graft vs. Host Disease or is it simply the toll of three years of constant treatment? I am left to do nothing but guess.

I have gone from having to take six laxatives a day pre transplant, to no laxatives and a requirement for a mammoth supply of wet wipes. I do not know what is happening inside my body for this change to have occurred. I take a number of pills a day that constipate, so I dread to think what would be happening if my mobility was not so dependent on MST. Believe it or not, after 55 days, I still have not got my head around such a visible change.

My nausea is just as unpredictable as my fatigue. I take the prescribed medication and yet there are still days when I see the wrong side of my breakfast and even more days when I feel like there is a chance of me regurgitating more than just my words. Annoyingly, despite all the stools and despite the occasional vomit, my weight remains static. Joy.

I have self diagnosed neuropathy. Unlike the Velcade days of yore, when I suffered from dead arm and pins and needles, I now get all of that, plus severe pain in my fingers and toes whenever I experience a rapid change in temperature. It is a pain that takes the pleasure away from getting into a hot bath. The Medically Trained People tell me this is not an expected side effect from the transplant, and yet it started after the transplant and I  endure it everyday. Have I become a hypochondriac to boot? Probably.

Mentally, I am coping. You can say that I am also coping physically, but I feel like I have no control over the latter whereas I am in charge of how I deal with these obstacles and holt myself together. My brain and my feelings belong to me, everything else belongs to another power.

So that’s the long answer sorted. I can actually exhale now… No, hang on, I think I have something profound to say.

πŸ’‰πŸ’‰πŸ’‰

In My Myeloma experience, I have never felt so detached from my treatment as I do at present. It unnerves me. It is not a feeling I planned for, nor want. I do not know what the caused it, but when it comes to all things allogenic transplant, I feel like I am nothing but a vessel. No, it’s worse than that, I feel like a specimen that is constantly being poked, prodded and analysed; a specimen who is seen but not heard; a specimen who is no longer a human being but is a sequence of numbers and test results. 

That is not something I have said lightly; it is not something I want to think, let alone feel. I’m impatient. I’m impatient for something and I don’t know what.

πŸ’‰πŸ’‰πŸ’‰

So, after all that, be honest. You preferred the short answer didn’t you?

EJB x

Advertisements
Tagged , , , , , , , , , , ,

Catch & Release

It has been seven whole days since I was told that I could go home and indeed, went home, leaving my week stay at St Bart’s but a distant memory. The latter part of that sentence is total bollocks by the way, the schedule of an allogeneic SCT, even if it is just a mini one like mine, makes it next to impossible to pretend that the hospital is just a misty water coloured memory in the corner of my mind. In the seven days I have been home, I have been to St Bart’s twice and in touch with them via phone or email on three other occasions. Essentially, I have been in touch with said hospital every working day since I left it. 

My bloods might be going in the right direction and the medically Trained People are making all the right noises, but did I leave there too soon? How the heck should I know? I spent all of Monday in hospital being tested for bugs and slugs in isolation, because they was a question over my current health.

If you were to speak to me or see me over the last week, you would probably conclude that I did leave too soon.  On Monday, a Medically Trained Person was asking me complex questions like “what was the date of your transplant?” and “what did you do before all of this?”, and I felt like I was taking my French oral GCSE without revision. All I could do was apologise that I could not speak normally. Essentially, you are looking at slow, occasionally drawling slur.

I have had two stem cell transplants before this, they were autos, meaning the cells were my own and the recovery was hard, especially after the first one. All so very hard. Upon discharge after both transplants, I got into a car and went straight back to Mamma Jones’ to be looked after until I felt like I could take a stab at doing it myself. My current treatment regime does not allow for that sort of leisure. It barely allows for sufficient rest.

Upon leaving last Wednesday, I was told that I needed to return on Friday or Saturday and then again on Monday for a Doctor’s appointment, leaving little time to make the four and a half hour round trip journey back to the Fens. And so, I decided that I would stay in my flat, with Housemate to help me until after the appointment on the Monday. There are many things one could say about this decision, but for today at least, as I continue to struggle to find my words, let’s just say it was decision most ‘foolish’. 

I am incapable of looking after myself. I imagine that is a fairly difficult statement for any 32 year old to say, accept I am 31 (the proofread) so I will say it again because I know it is hard for me to say; I am incapable of looking after myself. I am also incapable of planning anything, following a plot of any kind, having a prolonged sleep without experiencing a nightmare and not missing my friends.

I knew these facts last Friday, when with my bags still packed from the hospital sitting in my hallway , I phoned Manma Jones crying because my hair had started to fall out and I needed an hour’s lie down post shower, pre dressing in order to make myself presentable for blood tests. An hour after that I spoke to Big Sister and three hours after that she was at my front door ready to drive me back to the house of Mum Love. That night,  100 miles later, my mother needed to help me into my pyjamas. I then spent almost 23 hours of the next day sleeping. I did something quite similar yesterday, although yesterday, I only ate when food was presented to me at 18:10hrs. The previous day, after nine hours in the hospital, I realised that I had forgotten to eat anything at all. 

In hindsight, thinking that I could look after myself straight after receiving seven days of round the clock care, was just bonkers. Of course I have a Support Network in London led by Housemate and Bruce, but one of them is not anatomically capable of putting me in my pyjamas and the other one would be mentally scarred by the concept. Essentially, London assistance isn’t the same as the one I get with Mummy. The people of London have no reason to stand by me when I scream and shout and let it all out, and if I were being perfectly  honest, I will always try my hardest to avoid too many people seeing me at such a low ebb. A location I have been flirting considerably with this last week. 

I am trying not to overthink the situation because I know there is no turning back now and I also know how fortunate I am to be in this position in the first place. I just wonder that if I am finding this transition so difficult now, how the devil am I going to manage when the real thing gets started in a few weeks time? That’s rhetorical.

Some of you may be fortunate enough to have never been an inpatient in a hospital, so let me tell you that whilst in hospital one has little to no privacy even with the privilege of a private room. The NHS, the wonderful and flawed NHS, pays people to create and deliver a care plan, cook and carry  three questionable meals a day, waters you, takes your blood, check your pulse, breathing and blood pressure, prescribe and deliver the correct drugs at the right time and ensures said drugs are swallowed, they change your bedding and clean your room daily and these are just the people you see. Those tubes of bloods and tubs of my urine had to go somewhere, to somebody to check and the results put on to a computer, even if I wish these tests were done with greater haste. My point is, when one is an inpatient, all they have to do is try not to get too irritated by the lack of privacy. Everything else, even if it is not done to a quality one is quite used to, is done for you. One Sunday, for example, the threshold to my room was crossed 47 times in a 24 hour period; 45 times by Medically Employed People and twice by members of my Suppork Network. I do not know for what reason I documented this, but I believe it validates my next point.

  
The minute I walked out of the East Wing last Wednesday afternoon, all the responsibility for doing all of those listed above bar the things done by those unseen technicians handling my bodily fluids,  fell back on to me. It fell on to a me who continues to be nowhere near capable of doing such things alone. I can barely remember to drink, let alone to prepare the food I do not have the energy to eat, and remember to take the 20 odd pills I am prescribed each day at the correct intervals. And then there is cleaning, I attempted to lint roll my pillows today to remove evidence of my shedding hair and Inhad to do it in four separate sessions.

I went into my treatment with my eyes wide open. I knew it was going to be difficult, but I did not think that I would be doubting my ability to see it through so early on. A friend said to me earlier that I had rhino skin, which I sincerely hope is true for no other reason than all this treatment is actually going to make my skin thinner. Not just metaphorically thinner, but old-lady-be-careful-with-the-plaster-thinner. 

I think I just need a few weeks in bed to rebuild, but that is not afforded to me. 

My transfer to St Bart’s seems to symbolise much more than a change in venue for my treatment; everything seems different and all of it seems out of my control. Even though I may allow myself the occasional daydream that this time next year ‘I could be normal’, I am also a realist. I know that what is still to come is going to be so blooming difficult and I’m struggling to see where I am going to find the strength from to achieve my goals. My treatment feels relentless. This is relentless.

Prior to my discharge last Wednesday, I was asked to read an 79 page leaflet from Anthony Nolan called ‘The Seven Steps: The Next Steps’. I knew the contents of it, but I do not know if on the day I was getting to go home after spending a week in a drug fuelled neutropenic haze, I needed to read “it is important to remember that although you are being sent home from hospital, and an important phase of the transplant process is complete, it will be many months before you are fully recovered”. Define ‘many’.

The treatment is intense and I have not had find time to catch my breath. Reading that leaflet seemed to have cast a spell over my whole week. I do not normally feel so negative. That leaflet basically said, don’t relax yet, for the worst is yet to come. 

EJB x 

Tagged , , , , , , , , , , , , , ,

The Montage

If my life were a movie, this blog would be a five minutes montage sequence, deftly edited, to show the audience what I have been up to in the six weeks since my discharge from UCLH’s care.  It would need a soundtrack, all good montages do, take Rocky for instance. My soundtrack could be ‘Things Can Only Get Better’, but then, that would be an anthem that would need to last considerably longer than an edited version of my the last six weeks. For, we all know that things for me, are going to get worse before they have a hope of getting better. No song would really fit this period post Transplant Number 1, so just imagine the whistling theme from Disney’s Robin Hood, for no other reason than the fact it is a jolly ditty and a montage should really be inspirational rather an insipid display of melancholy.

The only barometer I have for how I should be feeling 56 days after a stem cell transplant is how I felt at this point after my last transplant. Of course, I had less Melphan this time round and for better or for worse, when I feel frustrated and fatigued, remembering a previous point when I felt worse, does not make me feel any better. My brain is firmly locked into the now, and knowing I have felt weaker is negligible when held against my current daily battle to get and stay out of bed.

In my head, the montage will begin with that wonderful  taxi ride back to my flat, there might even be a close up of my face showing the relief I felt at being able to go home. This opening shot would then be followed by several different scenes of me in various positions of rest on my bed at Mamma Jones’, her sofa, my bed in London Town and my own sofa. Montages tend to not have subtitles, but somehow, it would portray that as the weeks have progressed, I require less sleep and marginally less rest. The key word there, is marginally. Three weeks ago, I was introduced to my old foe, insomnia, so you would also need to see the nights I lie awake watching episodes of Inspector Morse worrying about my future. Fictional murder is really proving to be a great companion.

The first dialogue would probably be the conversation I had one week after my discharge with a Medically Trained Person, who told me that I would fight with fatigue everyday and then one day, approximately three months down the line, I will realise that I have more energy and I would suddenly find that I feel ‘normal’ again. Then, cut to a shot of my face looking like somebody just told me that a cat was a donkey, because I knew and know full well that that is not what is going to happen to me in three (now two) months time.  I’ll be swapping one trough for another, and that sort of medical autopilot made me want to punch a wall and it has done every time I have thought about it since. I think my acting skills are good enough to capture my ever present anger at getting better to allow myself to get worse…

Very neatly, this brings me to my enforced mantra or should I say, mantras. I’m getting better to get worse to get better. When that one fails, it’s all a means to an end. Then, when things get really bad, I just tell myself a very firm IT WILL GET BETTER, eventually. Or most commonly, my nearest and dearest have to tell me that. Most of the time I am just trying hard to trick myself into thinking that I am not bored of My Myeloma and my inability to do more than five hours of activity a day on a good day. 

In the immediate days of freedom, I spent ten days at Mamma Jones’ sleeping 12-16 hours a day. My sleep was intermixed with trips out for (small) lunches, Tescos, a Hobbit marathon with Haemo Dad and being waited on hand and foot. I am positive enough to acknowledge that I improved far quicker than I anticipated, and thus I was given permission by Mummy Dearest to return to London, where I have been attempting to look after myself ever since. Technically, I had a four day trial run, followed by a five day return to Mum love, due to what I would describe as ‘a bad few days’.

My bad few days included a few tears, a declaration that I had had enough of ‘all of this’, nausea and flu like symptoms. It was a feeling of doubt that passed temporarily, until the next thing happened to rile me up and then it passed again until the next thing happened to rile me up. And so it goes on.

Since my return to London, I have imposed a strict one plan a day rule. On the days I have been weak and desired to see members of My Support Network and planned more than one outside activity, I have been forced to cancel the second, because my body comes to a fast and bumpy stop. By outside activity, I include the odd trip to Sainsbury’s, three hospital visits, one barbeque, a few lunches and several trips to the Hackney Picturehouse. That would work very well into the montage. I really cannot get enough of the Hackney Picturehouse. My inside activity includes daily logic puzzles in an attempt to get my brain working faster than a baby turtle walks, cooking and half watching a lot of the telebox. The montage should, whilst I have the ability to remember, feature a few conversations I had where I was forced to stop mid sentence because I failed to remember the word I was trying to say. It’s not just losing a train of thought, it’s forgetting the actual words. I will always then apologise to the poor unfortunate soul speaking to me and curse the day my blood decided to crap all over my life. 

As the whistling theme fades, the next conversation you’ll hear, would be my trip to St Bart’s Hospital on 11 May. Following a very long wait, I was prepared once more for the uncertainty of the post allograft side effects and told that Transplant Number 2 is most likely to take place during the third week of July. I then got very sleepy. 

Back to various scenes of sitting, resting and attempting to distract myself from the negative impact of having multiple myeloma. 

Before I forget, there should also be the occasional clip of me struggling to eat and drink, then burping. Once I was able to eat, with less oral flatulence, I still for what seemed like several weeks, struggled to drink anything more than a sip without wanting to vomit it back up again or having to lie down to avoid vomiting it back up. It was at this point when I realised the power of hot water and lemon. Cut to my new glass cup and saucer with a few slices of lemon. Thankfully, things have progressed somewhat, so you’ll also have to see a few clips of me being gluttonous. A gluttony that can only exist with a daily does of strong anti sickness followed by a milder dose during the course of the day. Feeding myself comes at a cost, and in the last few weeks I have suffered from excessive hiccups post gulp, chew and swallow. You can imagine what an attractive dinner guest I have become.

Last Thursday, I had my first clinic appointment at UCLH since my transplant. After an unpresidented 150 minutes wait, I met with a Medically Trained Person to tell him how I was feeling, which after such a long wait, was braindead. Intentionally or unintentionally, managed to make  me feel very bad about my fatigue and and other side effects because, in his words, I had a lower dose transplant. In a montage I am not sure how I would get across my confusion as to whether he was saying that I was not trying hard enough to recover, that my symptoms were not real or that I was just plain lazy. How should I feel after a stem cell transplant that was preceded by nine months of chemotherapy treatment? Better, apparently. As for my need for anti sickness, I was told that I should no longer require Ondasetron. Fortunately for my sanity, I had attempted not to take said medication  the previous weekend and consequently spent most of the day looking rather green. 

Can a traditional montage have voiceover? Would that work to depict the insecurity I just described? No? Well, the next scene should do the trick and that would be Mamma Jones saying something along the lines of this specific Medically Trained Person not knowing me, accompanied by  something derogatory about his bedside manner.

And that is the end of it, at least for now. I have a sneaky suspicion that this fatigue riddled, nausea filled, cinephilia, meloncholic and courageous montage is going to go on for a little bit longer. And on. And on.

I might not be Rocky Balboa punching meat or Vivian Ward hitting Rodeo Drive, but it is my life and at least you are up to date.

EJB x 

Tagged , , , , , , , , , , , ,

Day + 13

For 15 days and 14 nights I have ‘defied all odds’ and I have only stepped in foot of a hospital once to see the view from the 16th floor of the tower. The world I have seen has been very much restricted to half of University Street, approximately a fifth of Huntley Street, a few lifts, the Ambulatory Care, a treatment room or two and the Cotton Rooms. Most of my day, I would guess at least 90% of my day has been reserved for my bed and the room it is in.

I have saved you from the monotony of this, mainly because I have not had the energy to put words into sentences in my real life, let alone on a blog, but I have an hour to kill right now, so I thought, why not share my 200 metre in diameter bubble.

90 percent of my time on or in bed is a long old time to spend on or in a bed. We had to buy a blanket, so I could feel there was some distinction between the day and the night. I have watched, or at least listened to a lot of television. If daytime TV were not so horrific and my brain function not so limited, I could have enjoyed myself.

   

     

Anybody with a beady eye would have noticed that I swapped beds in the photos above.  There is a valid reason and that reason is because I was without a Mamma Jones or Big Sister from Monday morning and the former said I needed to be next to the emergency alarm. That was one of the most significant events over the last fortnight. Similar, but nowhere as painful as my five stools.

The Cotton Rooms, as I would have said the last time I experienced them, are more than palatable, I think they are better than anything Lenny Henry would advertise, and it has working air conditioning, which I could never not be a fan of. 

If the views from my beds were not riveting enough for you, I walked, possibly an entire cumulative mile in the same shoes, seeing and experiencing all of this, whilst feeling like there was a trout living in my skull, using all my available energy. 

             

   

           

   

   

It may cause some feelings of envy in you, for I have been told that not all Ambulatory Care ‘hotels’, are as slick as what I have had the (dis)pleasure to experience. The good old NHS, eh?

My favourite thing to look at each day is not a cold EMan ripe for sniffing, but a lone building, which reminded me half of the house in ‘batteries not included’ and half of the house in ‘Up’. It was a last building standing, for it’s immediate neighbours had been not so long demolished. My photo of it, does not do it justice.

  

Bed, wake up, force down some food and a drink, shower, walk, obs, walk, bed. Bed, wake up, force down some food and a drink, shower, walk, obs, walk, bed…. That’s been the last 14 days. 

Right now however, I have mixed things up a little and my view is this and my is it beautiful:

  

My routine will continue to be monotonous and I will continue to be weak, but I will be in my own beds, with the dog/dogs around me, in my own space with on demand television services, feeling rather smug in the knowledge that I had an autogenous stem cell transplant, without being hospitalised.  There is very little I can feel smug about, so I will embrace becoming an urban myeloma legend.

I’m home and that, on Day + 13 is bloody brilliant.

EJB x

Tagged , , , , , , ,

Tales of the Unexpected

Sometimes in life, and I say this as a 30 year old myeloma sufferer, things do not go as planned. Apart from the original diagnosis, the early side effects, the setbacks,  the tumour and the relapse, My Myeloma has become  quite predictable. Once I have been told a medical plan, I can, with a teeny amount of confidence, know what to expect. 

It was a similar experience coming in to this transplant. I planned, I prepared and I purchased pyjamas; all in anticipation of this transplant running a similar, if not worse, course to the previous one. I told myself it could be different, but only in my assumption that it would be worse, than my memory had imagined, and that was only so I could take the pain if it was. It was a theme that I also hoped would dull the competitive feelings I had towards beating all the negatives of my last transplant. A transplant that saw me go home on Day +16, after being hospitalised on Day +4. What happened in the middle does not count.

Ahead of the first transplant, I was given a whole heap of reading materials telling me what my transplant was going to be like. I chose not to get it and read it all over again this time around, for I had remembered the side effects well enough. Plus, I knew a Medically Trained Person was going to talk me, face to face, through the process and it’s side effects before I could be  prescribed the Megatron. 

Mouth ulcers, diarrhoea, fatigue, nausea, hair loss, temperature, infection and hospitalisation. To me, those side effects were nothing but definite. In my transplant daydreams, I can confirm that said infection was never more severe than the one dose of antibiotics realm (well, when I was not being weak willed). 

It was just a case of waiting for them to start.

Today is Day +11. I feel sick, liquids  and my limited solids intake are followed by many a beefy burp, my hair is falling out, I am constipated, I sleep for 12-16 hours a day and I am able to be comfortable and functioning out of my bedroom for up to one hour each day. I have felt this way since Day + 2. My mouth no longer feels like I have bathed it in sour milk, but on the other hand, I have not deposited anything since Friday afternoon. I did wake up multiple times during the night and this morning experiencing something new, and that new was a little blue, in the form of significant lower back pain. So bad in fact, was said pain, that two hours after waking I was convinced my kidneys were failing. It transpired that the pain is caused by the injection I have had to have everyday since Wednesday. 

From the list above, there is one key and inevitable component missing. It has beds in it, lots of Medically Trained People, too few lifts, a mediocre canteen and views of London other buildings would make you pay for. It’s the hospital. I am not yet in hospital. In addition to this absence, I have also come nowhere near soiling my pants.

The question that has been plaguing me since around Day + 7, is, at what point is it realistic for me to stop waiting for the bad things happen and start planning my discharge? Then, in having asked that question, have I jinxed any chance I have of remaining poo and infection free for the rest of this transplant experience? Actually, have I already asked for the quick and severe enslaught of illness, when I sent an email to my friends at the weekend,  suggesting that there was a small chance that I will not go into hospital, and thus, I needed volunteers to sleep next to me in the hotel this week? 

I have many more questions. I asked the Medically Trained People whether I should be worried about not going in to the hospital yet. Mamma Jones asked whether this would have an impact on the success of the transplant. I asked if it would prolong my overall stay. We haven’t had any comprehensive answers to these questions. On Friday, during rounds, I was told that with everyday I am out in Ambulatory Care, I am a day closer to going home. At the time, I was placated, but with hindsight, that answer is something of a misnomer, for that statement  would also be true were I in hospital. 

I cannot get an answer from anybody. At least, I cannot get one to satisfy me.

My White Blood Count has been rising for the last three days, not to dizzying (or should I say dizzy-less) heights*, but rising all the same. I asked if this meant I was improving. Words were said, but they did not create an answer. I was told that the doctors will look at my neutrophil count, which had been flat for five days. Flat by the way is just a fancy way of saying ‘zero’. Apparently, people are usually flat for ten days. STOP THE PRESS: I just had to go and pick up some emergency morphine from the clinic, and I found out that today’s neutrophil count is 0.49. With regards to pooping green and going into hospital over simply going home, what the devil does this mean? 

This morning I was told that if I were to get a temperature, it would most likely happen today or tomorrow. What does this mean? Six other people had transplants on the same day as me or on the day before and I wager that they have all seen 38 degrees Celsius by now.

I do not trust any of this. According to the nhs.uk, 70% of stem cell transplants experience mucositis, either oral, gastrointestinal, or both. I had no idea there was a magical 30% to whom the colour green, when it comes to the human body, will only ever apply to eyes. Am I in this 30%? Does the 30% include people who have been given Melphalan? Does it? 

In all my planning, not being admitted to hospital was never an option. Over the last week, I have discovered that on very rare occasions, it does happen. With every day that passes, these people become bigger than the Loch Ness Monster to me. Bigger because I do not aspire to be the Loch Ness Monster.

My biggest worry? How reasonable and how healthy is it for me to hope that I can be bigger than the Loch Ness Monster? I do not cope well with disappointment and right now, because I have done nothing but wait and hypothesise, with so many questions unanswered, I have no idea which thoughts and what hopes are realistic. I need to know. If I knew, I could plan. If I knew, I could manage. If I knew, I could stop myself from thinking I am a failure if I ended up getting a temperature or the squits this late in the game. 

It may sound like I have been enjoying  some sort of Freeview only retreat for the last 12 days, but let us not kid ourselves, I am not well. Not being in the Tower is misleading, it’s misleading because thus far I have avoided infections and pain; I did not avoid the transplant. It’s easy to forget that my body is going through quite an ordeal. It can even be misleading to me, it’s misleading because getting dressed, wearing day clothes and walking 160 metres to and from the clinic each day, no matter how much I struggle to do it, makes me temporarily forget that my body is experiencing an ordeal. 

Every other day, I end up getting so tired by talking to a friend for an hour on top of the 20 minutes of observations, that I am forced to sleep for three hours afterwards. A sleep that comes only after I express my shock and question why I feel so poorly. On the days around it, I just sleep. When I am not sleeping, I am waking up with anxiety or from anxiety based dreams. When I am not sleeping, or experiencing anxiety, I try to watch the television. It would be fair to say that I struggle to follow the plot… When I am not doing any of those things, I attempt to hold conversations and believe you, me when I say that, ‘attempt’ is the operative word. 

Fatigue is not just about the tiredness. This whole process; the waiting, the questions and the process is exhausting. Plain and simple.

Who knows how long this will all continue? 

EJB x

* I think that was a blood joke, I have no idea if it works, I’ve taken some morphine.

Tagged , , , , , , , , , , , ,

Day+4

Please not this blog was written yesterday. Today is Day+5, but really, who is counting? 

I have to be blunt. This sitting around and waiting to get sick, is nonsense. It is a nonsense that is really is getting on my tits. That’s right, on my tits. I am aware that that statement is somewhat crude, but I do not want to use my very limited energy coming up with a more palatable way to express my frustration. Waiting to be deemed ill enough to be admitted to hospital is beyond tiresome. Knowing what that illness feels and looks like, and waiting for it to happen, is not something I would wish on my top ten list of worst enemies. It has to get worse before I can feel better. I cannot compartmentalise this yet. I cannot cross the bridge yet.

Today is Day + 4, the day I was admitted to hospital during the last transplant. I did not envisage outdoing my previous milestone. I planned, and I prepared, and I convinced myself that the treatment would take me down much quicker than it did last time… I am quickly trying to readjust my thinking. It’s back to the drawing board. It’s difficult to do that when every minute of every hour of every day of this last five days, I have waited with pure dread for the unforgivable mucotitus. The chickens have not hatched.

At this point during the last transplant, I felt worse than I currently feel. My bowel had already started to fill a reservoir, my stomach was cramping, I had not eaten for 24 hours and I had a fever. Today, I feel quite nauseous, but the three anti sickness pills taken three times a day, seem to be doing their job and I managed to nearly finish my lunch earlier. An outsider would be forgiven for thinking it was a piece of cake, but to the feeling of almost constant near vomit, add the need for 12-16 hours of sleep every day since Friday, burping after every sip of water, stiff joints and the occasional sweaty brow; and a poorly Emma you make. Just not poorly enough. What I experience now, I would  describe as ‘horrible’, but it is nothing compared to what is to come and I feel that most keenly. Am I allow to seek sympathy now when I know I am going to need so much more in a few days, or am I just crying wolf? 

There is a lady in the hotel who had her transplant on the same day as me, and she is waiting to become unwell  just like me. However, I am jealous of her, because unlike me, she has not experienced the ‘feeling unwell’ before. It’s ridiculous, but I think I found not knowing exactly what to expect much easier than I have the last 72 hours of remembering. I would be the first to admit that I do not recall how accurately I have remembered it all. Accurate or not, my current anxiety is real

As things currently stand, my White Blood Count and Neutrophils both stand above 2, I do not have a temperature, my mouth feels woolly and my stools are non-existent. I am eating, but I am unable to drink more than a litre a day. I am more than under the weather. 

I am whinging. I know I am whinging. I cannot help it. It’s the fatigue and the overwhelming fear that I will not be strong enough to manage the pain and inflammation of my body’s mucous membrane. That my friends, is the long and short of it.

Fortunately for me, I prepared for such moments of self doubt. There is the obvious response to my questions of coping and getting through it all, stolen from a sports brand, along the lines of just doing it.

However, when I feel like my ego needs a bit of stroking, I take my mind back to February 2015. “Hello a birthday weekend away with friends in February 2015”, I say. A weekend when, in spite of being at the end of a  very long course of debilitating treatment, and thus, worrying of nothing but my ability to stay awake, I defied all my expectations and stayed awake. I saw 05:00hrs for reasons other than my back hurting and steroids . It was hard work and required some preparation, but I did it.  I was so pleased and surprised with my three day performance, that I, rather delicately declared that I had “pulled some energy out of my arse”.

A few days after that, I was asked how I thought I was going to get through my transplant, and I responded with “I will just have to pull something out of my arse, that is what I have done so far and it has worked.”

So, can I pull something out of my arse yet?

EJB x

Tagged , , , , , , , , ,

Day Zero

My Day 0 happened two days ago. Personal experience tells me that when one’s days are measured by pluses and minuses, it is very easy to lose track of time. That’s the reason why I am two days late in telling you what my second stem cell transplant was like, I genuinely have no idea what day it is. Well, I know it is Day + 2, but I only know that because I have just returned from my daily observations. 

Back to Thursday, which was two days ago (it helps for me to repeat things because my brain function is so limited, making my next few blogs, I fear, nothing but factual). As the Medically Trained People require a full 24 hours between the Megatron going in and the stem cells, my transplant was not scheduled in until 16:30hrs. Given the late kick off time, Mamma Jones and I went to a morning screening of a Disney film in Leicester Square. It really was a perfect way to waste time and escape the road they call Tottenham Court. Cinema is a form of escapism after all. I could only escape for so long, and I was soon back to reality. 

My reality was lying on a bed with a PICC line in my left arm and cannula in my right, whilst I thought of nothing but the pain to come. All the magical wonder I experienced during my first transplant, the big cylinders on wheels storing frozen  stem cells, which then need to be thawed to 37 degrees Celsius, had gone. Even the big blue gloves the Medically Trained People have to wear to handle the frozen cells failed to get me excited. 

Fortunately, fate decided to play a little game on me and my pals, so that I could feel something beyond apathy towards the actual transplant. All 90 minutes of it. 

Fate, gave me 10 minutes of irrational panic.

For, after the Doctor had done his final check and the go ahead was given, and the nurse put on the big blue glove and leaned into the big cylinder on wheels, what did they find? Nothing. They found absolutely nothing. Another Medically Trained Person attended and placed the big blue glove on her hand and do you know what she found? Absolutely nothing.

The stem cells were not there… Now, apparently this had never happened before. The scenerios running through my head about what had happened to my stem cells were pretty imaginative, but not as imaginative as Mamma Jones’ who had three scenerios (not one involved them just forgetting to put the cells in the frozen container). My favourite of hers was that the hospital had accidentially given somebody an allograft using my tainted cells. In comparison, I temporarily thought they had lost my cells, making my medical plan was a  waste of time and thus ruining all hope of recovery. I hid these thoughts well.

After a few minutes of pure imagination, a man appeared at the door, apologised and explained that my cells were still in the freezer. That was it. We all breathed a sigh of relief and I thought to myself, well, that was different from last time. You will find that my thoughts of late really are not that exciting. 

Mamma Jones then, in celebration and relief, nipped out to get me a drink. 

And so, everything was finally ready, the first of three bags was hooked up, I had confirmed my name and DOB and Mamma Jones appeared at my door with something that resembled a milkshake from Starbucks. I had a sip of the drink and I did not like it. Almost immediately after that, my throat began to tickle and then it began to swell… I thought about not mentioning it, but what if the throat were to swell even more? So I mentioned it and the Medically Trained Person said it was probably because of the ‘preservative’. 

There I was, ready to sue Starbucks, until I realised that it was not the extra special ‘raspberry’ flavour that had given me the extremely tickiliy throat. The cause was whatever scientific juice they had used to preserve my stem cells. I thought to myself, well, that was different from last time. It took Mamma Jones a little longer to realise that my allergic reaction was stem cell and not Starbucks based. The Medically Trained Person overseeing my transplant, had decided by the third bag that I was in need of some antihistamine, and I can confirm with you, that I was indeed. I had never experienced an allergic reaction like it. I felt like I was in in a movie. An anticlimactic movie.

Once I had been given the antihistamine intravenously, I can confirm that I was no good for anybody, not even myself. Words became a muddle and sleep became my target. By 18:45hrs, the transplant was done and the only place I was heading was to bed. For 14 hours. 

And that was that. In just 90 minutes my transplant done… There was no pomp and no circumstances. Apart from the mentioned mishaps, it all, looking back, sounds so simple. Three bags of cells and the deed has been done… 

If only that were true. 

If only that were true.

EJB x


Tagged , , , , ,

Day -1

As I had long anticipated.Yesterday proved to be a busy, tiring and emotional day. Fortunately, as I had long anticipated, the majority of my emotions were overtaken by the sheer practicality of all the needles, waiting and consenting. It was a day of work, if your work is displaying super human strength and kindness whilst under duress.

Day – 1 is the day popularly know as the day one receives their Megatron chemotherapy. It could be Day – 2 if one was unwell and the transplant is postponed by a day, but my title is one of hope. I will be getting my transplant today, providing the nausea behaves itself. 

Whilst I was too busy yesterday to write another blog, I was able to make a note in my Notes of the key timings and events that made up Day – 1. It was no party.

06:30hrs: Awoke feeling refreshed and rejuvenated, if those things meant I awoke feel anxious, unable to sleep but eager to get things going… I then did the things we all do as part of the morning routine of getting ready to leave the house/flat.

08:36hrs: I had said my brave goodbyes, largely ignoring my dear Bruce and at this point, I was sitting in a taxi driving down my street. The driver took the bumpy roads.

09:00hrs: I arrived at the hospital, greeted by my mother who had arrived nearly an hour luggage. The first priority was to unload all our stupid luggage, dumb luggage. I really do have a great deal of luggage. I packed four books for light toilet reading.

09:12hrs: We walked down the stairs to Reception 2 on the Lower Ground Flood, and booked in for my PICC line appointment three minutes later. I also discovered a concealed toilet.

09:15hrs: Surprise, surprise, a Medically Trained Person called out my name and with that, I was led to a room I had visited once before. It was the first point in the day I felt Deja Vu, and Deja Vu it was. For legal reasons, I had to listen again, despite remembering, to what they were about to do to me, the risks involved with the procedure and then I signed a yellow form to say I understood it all. 

I then removed my shoes and jacket and lay on a hospital bed under blue surgical sheets whilst another Medically Trained Person pushed a tube through a hole in my left arm, whilst he looked at a screen and a lady looked at my ECG results. At some point, I was told off for contaminating a scanning device with my right hand. 

  


10:13hrs: The line was in and off we went to Ambulatory Care on the Second Floor, via Costa Coffee. On arrival, I introduced myself as ‘Emma Jones, arriving for the first day of transplant stuff’. I was told it was one hell of an introduction.

10:30hrs: Alternatively known as Observation Time, meaning I had my bloods, blood pressure and temperature taken, I got weighed and apparently I am 5ft 7″; I remember being taller.

Shortly after this, I was advised that I was going to be seen by the doctor shortly and I would hopefully have the Melphalan (Megatron for you and me), around 13:00hrs. I would have to wait until then because the drug would need to be prescribed by the Doctor and then ordered from the pharmacy.

At some point, I did see a pharmacist.

12:15hrs: The Doctor finally made an appearance, to be fair, he had made several appearances on the floor, but it was at this point he introduced himself and took me to room 2.6, for a quick chat and another yellow form. I would have mentioned this before the last one, but I was told that this procedure is not curative and there was a 2-3% chance that I would not leave the hospital after it. The rest of the risks involved infections and talk of intensive care. So, I signed the yellow form quoting something I or somebody else said last week and that was “if I did not sign it, the result would definitely be negative”. 

The Doctor, who was Medically Trained also told me that given the amount of treatment I had had, my heart and kidneys were in “great” condition. Mamma Jones said “good stock”, I thought, a pat on the back for obese people everywhere.

I then wandered back to Mamma Jones and the nurses, and I was told  not to come back until 15:45hrs, at which point, I would have the Melphalan at 16:00hrs. Great, I thought, food.
12:38hrs: Before food however, we collected our luggage and checked into the hotel. Also known as the Cotton Rooms. The Cotton Rooms looks just as it did before. We are in a twin room over looking the beautiful sight that is, the Macmillan Cancer Centre. Just like before. I also made sure I got a DVD player, which is also, just like before.
A lunch then filled the gap, along with very practical trips to Boots and Sainsbury’s for fizzy water whilst I can drink it and popcorn whilst I can eat it.
14:51hrs: We returned to the cancer centre with giddy excitment ahead of the chemotherapy. In addition to my mother, I was accompanied by eight ice lollies from Sainsbury’s. 
  
16:24hrs: I was hooked up to a drip and the Melphalan, started my first ice lolly, and with that, it all started. 
16:31hrs: Ice lolly 2
16:38hrs: Ice lolly 3
16:48hrs: Ice lolly 4
16:56hrs: Ice lolly 5, an ice lolly that was accompanied not by chemotherapy, but with a flush. After a bit of faffing, all was done and I was released until 09:15hrs today. 
17:25hrs: Bed and pyjamas. Bed and pyjamas in the hotel. Needless to say, I was very tired, but not tired enough to sleep, and so I watched High Society and half of Pretty Woman.
Aren’t transplants just a hoot?
As for this morning? I woke up with nausea, fatigue and swollen feet. I still had bacon mind. 
EJB x 

Tagged , , , , , , , , , , ,

Subject: Me, Me, Me

The following is an email I sent to some of the Support Network in preparation for today and beyond. In some of this, I will repeat things that I have written previously, but in my current, highly rational state, I think this is a good indication of where I am, and what I need to come. Why send a private email you ask? Well, firstly it saves energy, and secondly, I hope to dispel an ideas that my medical plan is the same as having a wort removed… Mind you, until you have pooped your pants and hallucinated green goblins bursting out your stomach because you are in so much pain, it’s all relative isn’t it? 

Please note, some of the names have been removed because this really is, all about me.

From: Emma Jane Bones

To: Friends

Sent: In the early hours of 29 March 2015

Dear All,

Hello. As I have had the last minute go ahead from the powers that be, I thought it was time for me to send an email outlining just what the hell is going to happen. 

Fear not dear friends, it is not an emotional email, just one layered with practical points about how my year is going to roll from now on. If some of that sounds emotional or distressing, it was not my intention. BLANK, The Counsellor suggested me levelling expectations. I think this is levelling expectations.

I know that this may seem self indulgent, but the transplant clock is a ticking. Plus, although it will not be emotional for you, it is an emotional subject for me, so it is easier for me to write it down rather than to say it. Secondly, I hope it’ll save me from telling people the same thing over and over again, forgetting who I have said it to, and thus bore you into silence.

Before I get going, I would like to thank those of you who have organised and/or participated in recent activities. To everybody else who I have not been able to see, I thank you for still continuing to care. It’s all very much appreciated. More generally, I had hoped I would have been freer from this for longer, but that was not the plan, so I thank you for still being around.

I am going to try to keep this brief, but who am I kidding, I can never be that brief. 

The Plan

1 April
I will go to UCH on Wednesday morning, when all being well, I will be given the high dose chemo. I will initially be staying in ambulatory care, also known as the hotel, with my mother. 

Thursday is known as ‘Day 0’ in the biz and this is the day I have the transplant. 

3 April onwards
I will be in Ambi Care until the poop starts or my temperature hits 38, or I show any other type of illness. There is no real way of knowing how long this will take, last time I was out for 5 days, but that means nothing.

Once I am sick, I will move into the tower on the 13th or 16th floor.  They say expect to be in for 3-4 weeks, but last time I was in for 10 days… I know which option I would prefer. 

My hair will go FYI. My feelings towards this are surprising. I did not anticipate this much dread, but the dread is there. I’ll be shaving it off after I have had the chemotherapy, maybe on Friday. If anybody fancies doing this for me, let me know? I have George’s clippers.

On Discharge
Once I am well enough to go home, I will be heading back to BLANK until I am well enough to reasonably look after myself. I say ‘look after myself’, what I actually mean is able to return to the flat and only rely on BLANK for a few things instead of everything.

During the time between transplants, I doubt I will be able to do that much. Afternoon trips to the Picturehouse might be doable. Definitely/maybe no alcohol. As with everything else, we will just have to see.

For those of you with birthdays during this time, I will endeavour to attend, but do not hold it against me if I do not. 

June/July
I will go to St Bart’s for the second transplant. Initially I will be an outpatient, there is a chance I will remain one for the whole procedure, the odds they gave me for this are 50/50. 

Don’t let this outpatient nonsense fool you. Whilst the risk of a particular negative result is no longer 40%, it is still high. Those figures are not based on the first few weeks after the cells are introduced, it is based on the months (and I mean months) after and whether my body decides to completely reject my sister’s cells. If this happens, it happens, but fingers crossed it will not. Best to say that now, so you have realistic expectations. It may not be an operation, but it’s a serious thing. 

I have been told that the best case scenario post number 2 will be rashes and gut problems, with a side of fatigue. I’m hoping to go back to being a size 16. Anecdotally, the fatigue is something I have not yet experienced. I am afraid of this the most. I am afraid of only having the energy to lie in bed for months on end and become bitter. I do not want to become bitter.

I’ll hammer this point home, the recovery is going to be long. Real long.  The guidance says no international travel for two years, but I think this must be wrong. 

Hospital Visits for Transplant 1

Whilst I am in the hotel, I will be accompanied by my mum or sister. On Wednesday, I imagine I’ll be too tired when it is all done and I’ll just want my bed, so no visitors that day unless you want to watch me suck ice cubes during the day. 

Thereafter, I will be able to receive and I will need visitors.

As I’ll need my mother a great deal throughout the year, I have said she does not need to be around too much whilst I am in hospital. This will mean that I will need visitors, because being stuck in a room for 10 days (or more) is extremely isolating. 

Here is the problem, I may well not have the brain capacity to schedule your visits. At the start, I’ll be better at it, but when the pooing and vomiting starts, I’ll probably find texting back stressful. I’m not sure how to resolve this issue, other than just ask you to come and hope I’ll be free. Or you can organise it amongst yourselves. Not practical I know, but I’m just anticipating the worst case scenario.

There are no visiting hours, although the mornings are when the doctors do their rounds and when the cleaners come. You probably do not want to see them.

It sounds obvious, but if you feel unwell, do not come. I will have no immune system. Don’t buy me anything.

In between visits, feel free to keep in contact, I’ll be tired and might not always reply right away, but text messages are always fun.

You

After my release, I will be suffering from fatigue. It’s a word you will get bored of. The fatigue, as I said earlier, will get worse after the second transplant. I am not exaggerating when I say that getting over the last transplant’s fatigue was the hardest thing I have ever done. It makes it quite difficult to trust my emotions.


As such, it would be prudent for me to say that there will be times when I become depressed. I hope not many, but it will happen and that will make me question pretty everything and everyone. In turn, this may make me appear like an irrational and mean bitch. All I can say to this is please bear with me, and try not to give up on me. I have an aromatherapy stick this time for relaxation, and you never know, it might just be what I need to keep it all together. If it is not, I will  apologise to you in advance.

Not being able to get out of bed, for long periods of time, it is easy to feel forgotten and lonely. So, I’ll need one sided friendships for a while. Colin will need a break sometimes too and I may need people to cook for me and other things. All this will require me learning to ask for help, or you could just be forceful. That will be tough on you, because I will become quite dull.

My life will probably be quite myeloma obsessed. Let me reassure you now, this will not be because I like to be the centre of attention or talk about myself. I am always more than happy and willing to talk about anything else. You just have to start that anything, for, I will not know of anything else unless you want me to tell you what is happening on my Facebook feed.

Realistically, I will not be as well as I am now, until the new year. I might be pleasantly surprised, but the odds for that, are not in my favour.

Other

Last time I had a transplant, I sent text updates for major transplant developments. If you wish to receive these again, do let me know.

So, all that is left to say is thank you. I cannot emphasise this enough, but you are all appreciated. I know I have upset people in the past for not showing or saying this enough, but, most the time I think I have. I’m quite forgetful don’t you know.

Emma 

Tagged , , , , , , , , , , ,

The Monologue

“Transplant, transplant, transplant, transplant, transplant , transplant, transplant, transplant, transplant, transplant, transplant.”

Hello there, if you wondered what the above was in reference to, I can confirm that that is my constant internal monologue, and it has been all week. It started on Monday. The countdown to my transplant started when I was given the provisional date, but what I would call the real countdown, full of irrationality, interrupted sleep and attempts to open a Spotify Premium account only really started this week. 

This morning, I woke up ridiculously early after a dream about having to do a last minute piece of work, a piece of work I managed very well FYI, at the place I worked as a bright eyed and eager teenager. The dream  also featured a lot of drinking , which meant I was thirsty, but that has no bearing on this particular tale. Although vivid, it is one of the better dreams I have had this week. The one that kept me awake on Sunday night was my classic anxiety dream. I was at school and I had not studied for my GCSE’s. The difference from the usual set up for this specific dream, was that I had myeloma in it and on top of managing that and my panic at having not studied, my fellow pupils were being inconceivably mean to me. The dream ended and thus my sleep with it, by me entering the Reception crying, telling the Receptionist that I could not go on, and then I turned my head to see Bruce’s bat ears and his walking mate coming to take me home. Monday and Tuesday just featured forgettable, but sleep depriving nightmares. I do recall me falling quite a distance in one of them, I might have been pushed… On Wednesday night I slept, but I wager that was because I had had an 11 hour day.

The point of this blog is not to tell you about my dreams, but it is to tell you that this week, I am feeling what I  imagined I would  feel this week and that is a barrel of various things that all amount to anxious. I am scared, quite scared actually, paranoid, preoccupied, sleep deprived, irrational and emotional. How is that for a toxic mix of feelings? My company is the best.

To be fair to myself, I think outwardly at least, I am managing it all slightly better than my list above implies. Well, as long as nothing else rocks the balance like running out of Bran Flakes. That however, is only because today is Friday and not Tuesday when my internal monologue was at it’s loudest and most booming. Plus, when I feel this way, I am more likely to be quiet around others than sob whilst bashing my fists against the floor.

By Tuesday, after a long weekend, I was convinced, in part due to an unresponded email, that my transplant was going to be postponed. I had convinced myself that the appointment I had the next day was not going to tell me that the tests I had the previous week were fine and I was transplant ready, but something quite the opposite. Something quite bad. My appointment on Wednesday did not tell me that, it told me what my rational side was telling me all along, and it is a truth just as frightening to me as my not so illogical, fictional journies of anxiety. Do not forget, I did have one previous transplant postponed at a time when I believed it to be a dead cert, and that leaves a deep scar that even Bio Oil couldn’t irradiate.

Although I have calmed down somewhat, I am still sleep deprived and faced with the fact that bar me getting a bug of some sort, I will be going in for a transplant in five days. FIVE DAYS! Do you know painful one of those is? I do, at least I think I do, for I do not trust my memory. I have either overestimated or underestimated the various pains I am going to feel, I just do not know which. I could, of course, have remembered it all exactly how it was and it is not a pleasant experience to remember. All I know is that it is coming… Hypothesising about how the SCT is going to go this time, what day I will leave ambulatory care, how long I will be in hospital, just makes my head hurt and my tear ducts open.

“Transplant, transplant, transplant, transplant, transplant , transplant, transplant, transplant, transplant, transplant, transplant.”

It is true that I do know roughly what to expect from the autograft, I do not know what is going to happen with the allograft. Some might, quite reasonably say to me that it is at least three months away and I should not be concerned with it, but this week I am not rational. As the monologue and countdown continues, I know that I have five days and five nights of (reasonable) health left. Thereafter, as long as there are no delays, an event of which I am in constant fear of by the way, my life is going to be all about the transplants indefinitately. Actually, they’ll be all over me and I cannot estimate when the time will come again, when I am going to feel fit enough to venture anywhere alone. I have a countdown to losing my freedom. A Twin yesterday likened it to a prison sentence, one of the indeterminate sort.

Next m Wednesday marks the start of something that is going to be long and arduous, which has an unknown ending. When I see that written down, I can see why this week is proving to be such a hard slog for me. 

Take the emotional tasks aside and I am also a person who has five days left to ensure that she has a fully stocked entertainment unit for the hospital, which includes somehow restoring her accidentally lost iTunes collection. On top of that mammoth task, I have to get photographs printed for the notice board, finish making birthday cards, tidy my room, rewash all my pyjamas, find Doggie, fix and clean EMan, pack, go to the British Museum, have planned fun, clean soft furnishings in the lounge (added to the list yesterday), make sure the delivery yet to arrive due to insufficient postage is in fact the 2metre Apple approved phone charging cable I think I ordered and finally, buy some cheap black pants. You have no idea how huge these tasks seem to me. It’s an epic mountain of completely essential tasks, similar to the one I made before my last transplant about defrosting the freezer and sorting the cupboard of crap, only, way more important and less optional. Let us not forget that these are all things to do on less sleep, with heightened feeling and an air of mania. 

On Wednesday, I was asked quite seriously and enthusiastically if I was looking forward to my transplant. To which I responded “yes and no”. One couldn’t really ask for more than that response to such a huge question right now, but I will try…. A few hours earlier than that silly question fell at my feet, I cried to my counsellor and expressed my fear that all this impending illness could be for nothing. I then, reasoned that if I did not do it, noy go through with it, the failure I fear so greatly, would definitely happen. At the time, I thought my revelation was inspired. Inspired maybe, but I still have an uphill climb followed by another uphill climb and I am sure I’ll lose that path along the way.

Over the long and incredibly short, next five days and I am going to try to hold on to some of the inspiration I found on Wednesday afternoon. It is inevitable however, that I will struggle with it as I have done since I woke up in the early hours of Monday morning.  There is melancholy around every corner. Everything, even Housemate waking me up this morning is a reminder of what I am going to miss.

In conclusion, I am terrified and conflicted about my treatment starting and I wish I did not have to go through it all again, knowing that this time the experience and pain is going to be multiplied by at least 2.5. I know I have no other option. I know it is the best course of action for me, but this week, I feel really sad and angry about that.  I am grieving the things I am going to miss whilst I am doing it. 

Come Wednesday… well, I have to be ready, don’t I?

EJB x

Tagged , , , , , , , , , ,
%d bloggers like this: