Shouldn’t be surprised…..

So this time while I sit in hospital, pondering what my bloods will be for another month, I thought I’d write about something that might actually help someone.

It all stems from us visiting Australia over Christmas and if you’ve ever suffered from dry skin, you might want to keep reading.

Personally, I’ve had eczema since I was a baby. It has never been horrendous, but it’s been pretty bad with fingers cracking and generally a dry skin issue. My skin is constantly dry unless I use moisturiser – which I’m too busy (for busy, read ‘lazy’!) and my head has been itchy for the last couple of years. It basically makes me feel pretty scummy and not particularly attractive at the best of times.

I had my first shock when I had my stem cell transplant. My eczema pretty much cleared up! And that was nearly 6 years ago! I don’t ever have a big reaction now, and don’t tend to suffer from allergies in anywhere near the same way. Now don’t get me wrong…I won’t be recommending a transplant as a cure for eczema, but it did totally surprise me. I can even wear earrings again which was a big ‘no, no’ before as I would always react.

Despite that, I continued to have the dry, slightly flaky skin (ummm, nice!), the itchy head and the generally not nice feeling about myself. Until we went to Australia. While were out there we were staying in AirBNB properties, most of which had septic tanks. Any of you who know about these (!), might be aware that you have to be very careful what you put into them. So all of the properties we stayed at provided all the usual toiletries, cleaning materials etc that you would expect in an AirBNB house…with the slight difference that they were always organic, and always without Parabens and without soap (along with a few other things that I can’t remember!). Any my head stopped itching so much, and my skin became less dry!

So when I got home, I thought I’d try it out to see whether it was the products or whether it was the water/ environment out there. I’ve been using a Forever living shampoo and conditioner for the last couple of days (Thanks Katie! And if anyone wants some let me know) that whilst I don’t think is organic, doesn’t have parabens or sulphates in it. And already my head has stopped itching so much! I’ve also grabbed a shower gel from a health shop and found that whilst my skin isn’t beautifully silky and smooth, it definitely doesn’t have a permanent dryness now!

So, I’m still in a slight transition phase and am still trying to make sure it isn’t just a fluke, but actually, it can’t do any harm to knock out all these chemicals, especially since I’ve been saying for years, that they must be contributing to all the conditions that are now out there. It’s not a totally easy decision as the products costs substantially more than what I used to buy for us. However, if it does the job, then it is probably worth the extra pennies. I’m going to try my son next as he has dry skin – it’ll be interesting to see how it helps his skin, if at all.

Anyway, I’d be interested to hear if anyone else, post transplant, or just in life in general, has experienced anything similar, and also whether if so, they have any products they would particularly recommend?

 

 

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”.

???

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.

???

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.

???

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

EJB x

All Change

I haven’t written for absolutely ages….and yet tonnes has changed and I probably should have done. I can’t even remember what I last put on here but we are about to embark on a major change of direction so I thought I’d update the blog.

A few months ago, Nick had the opportunity to take redundancy from his pharmaceutical job. It was a decision that made sense to us, and it gave Nick an opportunity to take stock of what he wanted from a lifetime of work (!) and look at what was out there. While he was making these decisions, he started doing some interim work for my brother in law who sells hardtops and accessories for 4×4’s (Autostyling Truckman for anyone who has an interest!). A massive change of direction but at the time it gave Nick the space to look for work with no pressure, and for Mike, I think it gave him someone with a wealth of experience to look at his business.

Little did we know when he started, that he would be offered the new position of Commerical Director with Autostyling Truckman. An offer that, given that the role is based in the Midlands, would require us leaving our home of 13 years in High Wycombe, and moving back to where Nick grew up, and where his family and friends, and my sister and her family live.

This all happened remarkably fast and since then, we have been in a whirlwind of finding new schools for the children, selling our house and finding somewhere to rent for a year while we find a permanent home. In fact, I think we’ve managed to turn the whole thing round in about 6 weeks!!

I’m ever so mixed with my feelings on the whole thing. It is an amazingly exciting opportunity, both for Nick and for us all as a family. New places to explore, new people to meet and new jobs to work hard at. But I am definitely very scared about what I am leaving behind. We have lived in High Wycombe for 13 years now, and our kids were born here (Sam being born in our home of 13 years!). We have an amazing group of friends in the area who not only saw us through those early days of starting a family, but who have also supported us through my diagnosis of myeloma, my transplant and everything that came with it. I can’t begin to name the people who have been amazing, but I hope they all know who they are. I will miss them massively as we move on and just hope that the 90 miles up the M40 won’t put them off visiting us.

It’s not only the Wycome folk though. Many of my family, and my older school friends also live in and around London and so of course the move takes us further away from them….just popping over for the day isn’t really a reality now. The positive is that perhaps we’ll get more quality time with them as we’ll all have to stay when we visit each other…..but sometimes that can be tough to fit in for people with jobs/families/homes. So whilst I have every intention of doing it (they can’t get rid of me that easily!), I am worried it will put others off!

I’m actually say at the Marsden in Surrey as I write this. That is another ‘end of an era’ moment. I came here in 2010, around a year after my initial diagnosis. I wasn’t happy with the consultant I had at Wycombe and we made the decision to travel round the M25 each time to get access to consultants and a hospital which has looked after me amazingly. I have to say, the move is a little easier as my initial consultants Faith and Gareth, both moved to America last year and other than my CNS (Clinical Nurse Specialist) Sharon, and my trial nurse, Gemma, other staff often come and go. But I have been amazed at how they all do whatever they can to make life easier. No pain is silly. No concerns are ridiculed. Everything is taken seriously. And more than that, they treat me as more than just a patient. I am a person in my own right to them. I happen to have myeloma which they treat, but that isn’t what our conversations are ever about unless they need to be! I will miss the fact that I am known there and that I know what I’m doing. That said, I have been put in touch with Heartlands in Birmingham and will start there next month with a consultant who has been lovely since I contacted him. So new starts can mean other new things which hopefully will be good.

I had worried that I was starting to relapse a month ago, but we no longer think that is the case so that’s great news. Obviously we never know when it might happen….could be a month, could be a year, could be 20 years. Keep hoping for the latter please!

Anyway, it will all kick off when we get home tonight. Packing the things to go in the cars, before the packers arrive tomorrow to pack everything else. And then on Thursday we leave West Wycombe to begin our new adventure. So I just want to use this as an opportunity to thank everyone who has been there for us and to say that we want to keep those friendships going every step we go. Friends and family are always welcome to visit us – you mean so much to me. And we will make sure we visit too. Thank you everyone. Love you so much. xxxx

Like A Bullet From A Gun

WARNING – ?THIS BLOG CONTAINS TALK OF FAECES. HARD, SOFT AND SHAPELESS FAECES.? SO DON’T READ ON IF YOU HAVE A WEAK DISPOSITION. IF YOU DO READ ON, BE THANKFUL I HAVE NOT MENTIONED MORE.*

One of the biggest challenges I am quickly trying to come to terms with is the change the transplant and it’s drugs are going to have and have already had on my toilet going activities. I have spent nearly three years complaining about the impact my previous treatments had upon my bowel. Nay, it is more than that, I had publicity reconciled myself to that fact that unless something was drastically wrong with my body like a course of radiotherapy through my stomach or a hefty dose of Melphalan, I had a life of overly formed, every other day excretion with constipation ahead of me. I understood that and I knew how to manage it. Maybe I had even come to like it. At least it was predictable. Ghostly. ?

Since my release from hospital however, I have been forced to discuss the taboo that is poo, to avoid mass panic and hypochondria. My mass panic and hypochondria. I can feel my body changes and I am on high alert for it and this is outwardly, the biggest change thus far. Gone are the instantly satisfying rabbit pallets, and in with what I do not know what. I could not make my way through the consent or any of the transplant literature without coming across the word ‘diarrhoea’, so the sudden change is not unexpected. It’s just unwanted. And so are the new definitions. 

I could go deep into my concerns and summarise the many conversations I have had with the Medically Trained People about why investing in some nappy rash ointment is a good idea, but I think the conversation below sums up my current dilemma.

  
Such is the importance of stools in this post allo world, I have to inform the Medically Trained People if I have more than two sessions in a single day. Manners would usually dictate not discussing this with anybody else, let alone the out of hours hotline. 

On this subject of toilet, I am beyond cautious. You can tell nurses in particular are used to this sort of talk because my nurse on Monday compared the consistency and colour of her breakfast drink to what I need to be on high alert for, whilst she consumed it. Take that Weetabix. I welcomed the clarity. I have sample jars in my handbag, should there be a sudden need for analysis. I am not actually going anywhere requiring a handbag at the moment, so the fact the jars are still in my handbag are a testament to my current energy levels.

Earlier in the week, I came across the notion of ‘constipation overflow’. If you are interested, that is what I have by the way. Constipation overflow. There is no need for the nappy rash ointment just yet.

The sad truth is, despite my panic last week, I haven’t experienced diarrhoea yet. My friend would be correct with his definition of a ‘loose stool’. For me, this is just another unpleasant experience and it is one that realistically is only going to get worse. Another reason why I must remember my fluids!

The diarrhoea will come and come it will and when it does, I’ll put on my rose tinted spectacles and look in my medicine drawer at my Sainsbury’s own brand suppositories with yearning.

What a depressing thought. 

EJB x

* Humans do Number 1s too, and they are not immune from the allo side effects either. FYI

 The Notice Board

Way back in 2013, I spent 11 days of my life in a room of great bleakness. It is difficult to conjure up the mental differences between slight and great bleakness, but  for me it was a room that encompasses everything that was bad with this word. If only it were the interior design of that room that was a problem. The centrepiece, if such a room could be deemed to have a centrepiece that was not its bed on wheels, was a grey notice board with three signs to the right hand side of the board. The biggest sign told me how to wash my hands properly (but I think I moved it there) , the second poster told me if and why I would be eligible for the Patient Transport Service and finally, there was a leaflet, that if you looked really hard at, you could see the 12pt font printed list of all the additional fatty foods I could order from from the canteen due to my not eating right and the neutropenia. I still cannot get over the fact that eating badly is considered to be better for you than a piece of fruit in any situation, but there it is. The PTS sign had some late 90s clipart on in and somebody had definitely used the ‘Tools’ section on MS Word on all the documents.  I hated that notice board. I have also realised that I still hate that notice board. 

The closer I got to April’s transplant, the most frantic I become about ensuring that I would never have to look at that grey notice board again or it’s posters. One of those things could not be achieved because all hospitals all over the land, have posters telling visitors how to wash their hands, and I currently have my sight and can pee, so put two and two together. Developing a board that would be nice to look at became almost integral to my planning. I mentioned in to friends and the importance of of was mentioned in my counselling sessions.

All in all, I think I visited four art gallery shops, the BFI shop, two Boot’s Pharmacists for printing purposes and Amazon. I had mini pegs, string two different styles of pins and just under 15 postcards to accompany my ten or so photographs. I was going to be the best notice board that had ever been nailed to a wall. 

And then, realistically being £20 lighter, it turned out that I did not need it during Transplant Number 1. I am not kidding when I say that I was slightly disappointed by this. I was disappointed that I was not become sick enough to to be admitted to hospital to see my notice board come to fruition. 

Unlike the majority of you folks out there, I realised that I would very soon be given the opportunity that did not involve committing a crime or other institutionalisation, to be in a room with a notice board. I hoped and I waited and I packed my ‘art’ with wanting. Then last Wednesay happened, I was admitted. With breath that was baited, I was taken to Room 10. I knew the word ‘room’ meant I would be in my own room, but in the few short pushes in the wheelchair I closed my eyes and touched EMan’s paw. It worked, and  because when the door opened, I saw not a notice board but a white board. I’m an artist of many a media, and just as soon as I received confirmation from three different Medically Trained People that the board was not there for medicinal reasons, it was go go. I was ready for my Art.  Given the change in background, Mamma Jones had to go out and buy scissors and tape, and given the passing of time, I misplaced a few photographs and postcards. 

In the end, not all of my support network was represented, and I had to explain to far too many people that some of the photos were not of my own (presumably failed) wedding, but it worked. I had directed a little something of my own to make what was a 7 night stay in hospital, that very bit not bearable.

  

And yes, it had fairy lights too.

And double yes, it’s back to being a white board.

EJB x

Made Up

Lipstick brings joy to my face. Foundation, a  splash of Touché Éclat, a sheer eyeshadow, a bit of eyeliner, a tot of mascara and little something something on my checks, apparently brings the life to my face.

Making sure I wear lipstick has been a cardinal rule of mine since My Myeloma began. The only times it has been broken, if you exclude the morning run to the shop, has been during periods of hospital admittance, days of the steroid crash and during Transplant Number 1 The Second when I felt it would be inappropriate to whack on some matte lipstick for a 0.2 mile walk.  I’m no Gwen Stefani. At that time, I also stopped wearing make up because I just found it became too cumbersome, when I was only leaving my bed for 30 minutes a day and lifting a blusher brush felt like I was bench pressing whatever is considered a heavy weight to bench press.

I do not know what I envisaged for my appearance during Transplant Number 2.  Comfort would be key of course and the outfit would have to be put together to allow for easy access to my PICC line and the minimal bearing of the arse crack. Next to that, because I knew I would be sitting on a bed for much of the day needing comfort, on a cancer ward, I concluded that wearing a wig would be unnessary. I originally wrote ‘redundant’, but that is very unfair for all those people, who I once was, who  wear their wigs for themselves. As for the rest,  my vanity must not have as much hold of a over me as I once thought it did, because I really did not give my hospital appearance and attire  any thoughts other than the  practical ones I mentioned above.

Well… that was until people started telling me I looked ‘unwell’. Or ‘tired’. Or ‘tired AND unwell’. Or when they avoided all niceties at all and said I look ‘awful’.

Why I wondered? Why in a matter of days had I gone from looking non descript, I had a ‘great’ on 10 July, to an ‘awful’? The answer, I pondered, has something to do make up. I stopped wearing the stuff at some point over the weekend when I forgot what which one was my right hand. In truth, I should have stopped wearing it a few days before that when I dropped the Chanel Blusher in the dog’s bed.

It begs the question, did the chicken come before the egg? Did I look awful when I stopped having the energy to put my make up on, or did I look awful because I did not have the energy to put make up on? Do I look tired because my neutrophils have dropped from 3.3 to <0.1 in a week or do I look tired because I stopped wearing my make up? 

I imagine it is a combination of the two, but I am certain that a man  going through what I am, would not have experienced such a vocal change in perception about his appearance to the extent I did,  just because I happened to stop wearing make up at the same time I started to go downhill. I asked Mamma Jones about this today and she cannot be objective as a mother and just said that I ‘looked like me.’

Two days ago, despite assuring a Medically Trained Person that I felt exactly how I had, for better or for worse, for the previous few days, I was referred to a Senior Medically Trained Person because I looked like I was ‘struggling’. I think this translates to I had some eye bags. Yesterday, a nurse who had not seen me for since Friday told me that I looked ‘worse’. Would I have looked better if my eyes were brightened by mascara? Was it worth me even asking? 

Would I be in my own bed now if my physical appearance hadn’t ‘deteriorated’? I am still eating, drinking and temperature free. Would the need for this current precaution had been less pronounced if I had been able to put a bit of effort into my appearance? 

Is wearing make up as a young female cancer outpatient and looking ‘normal’ an expected pre-requisitite to make the other patients’ and the staff’s day more palatable? I am certainly more comfortable when I can give my face  the time it needs.

Are all the make brands and their advertisers correct? Do women look better with make up on? Do I look better with make up on? I have been financially unable to purchase a daily ointment from MAC since Christmas and my cheekbones have felt positively non-existence since. I am used to be being told that I ‘look good considering’ and there is the frequent surprise of ‘you don’t look ill’. Complements I would not have, if I were to lay my face bare with it’s menopausal skin and hair, blotches and wrinkles.

Has putting the brush down been too much of a shock? Inwardly, over the last week I have felt grey, sunken, like no part of me has any definition whatsoever and I am in dire need of fluids. Was my war paint shielding others from this struggle? No about of make up could beauty up my blood results, nor could it stop me from wanting to sleep in the Day Clinic.  Using the term ‘decision’ loosely, but how much was my decision to stop wearing make up until I felt able to apply it better than my three year old niece the removal of a mask?  And how much of that decision made me look worse than I feel? 

Most importantly, I always considered myself something of a light make up abuser, but given recent comments, just how much have I been wearing? 

????

EJB x

Definitely Not Normal

There is nothing more anticlimactic than the word ‘transplant’ prefixed by the words ‘bone marrow’ or ‘stem cell’. Having experienced two SCT’s before, I knew this time round was not going to start with good looking people wearing scrubs shouting “stat”, whilst sporting my blood all over their latex gloves. My loved ones were not going to be waiting patiently for news in a reception area and it would appear the only soundtrack thus far comes from Julie Andrews. My allogenic transplant has looked nothing if not boring. I am convinced that the optional removal of a bunion would have looked more exciting than what we experienced up to and including on Thursday.

I’m poised for drama, but I do not know what that drama is going to look like yet, or when it is really going to begin, so in the meantime, I will share a few photographs of how Medically Trained People have made the extraordinary, appear somewhat ordinary.
Harvest

   

    
 
Day Zero The First

   

   
Day Zero The Second

Many people, included I, am surprised by fact that the stem cells are not tested where they are harvested at St Bart’s. Instead, on each Day Zero after Big Sister had been drained and her pins were with needles, her stem cells were couriered to The Royal Free Hospital, some five miles away for testing. They would then travel back by courier, before entering me. It seems a strange world we live in that my sister’s bodily fluids could have visited the magical place known as Whitechapel without their maker being present. 

The cells were taken away in branded picnic bags. On the second day, Big Sister and I showed far too much excitement towards the courier returning our precious goods  when unfortunately for him, he came across the two of us in a lift. We squealed (because it meant I would be home by 20:00hrs) and he looked at us like we were at the wrong hospital. I captured the moment. 

  
Waiting

  

Consent

In this world full of litigation and compensation adverts on digital TV channels, it has become ever necessary for the NHS to protect itself from being sued. For a patient, this means that before any procedure, you are required to sign a form to say you understand what is going to happen, and crucially, what could go wrong. 

In My Myeloma history, I have encountered many a consent form. Of course, when I was first introduced to them in August 2012, it did not register in my spaced out mind what they were. The second (I think) one I signed was for my kyphoplasty and I remember the fear of ‘2-3% chance of permanent paralysis’ like it was yesterday. I have consented for every round of treatment, a few of my biopsies, my two PICC lines and the two transplants since. That’s a lot of  carbon paper. At UCH, the most serious procedures come with an A3 consent form resulting in a log of thin white paper shoved into my handbag pending imaginary filing. My medical file gets the top yellow copy.

At University College Hospital, granting consent in my experience, is done on the day the treatment starts. That is not how St Bartholemew’s rolls. For on Monday, five weeks before my provisional Transplant Number 2 date, I sat down and listened to a kind Medically Trained Person reel off everything that can go wrong with the next stage of my treatment. It is not a moment I relished and one I wish I did not need to experience. I am very much in the camp of ‘just get on with it’, in other words, I want to be ignorant. I know that this is my only chance to beat this, what else do I need to know? 

A lot, apparently. 

Whilst I might not want to know percentages and other figures, other people in my life do. I suppose it is an easier way to assess the seriousness of a procedure. Although, facts and figures never truly represent all that is serious about any procedure. For example, nobody ever told me there was a chance that my previous transplants would turn me into a doubting nervous wreck. 

Prior to Monday’s appointment I was told that the recovery period of an allograft is not like that of the autograft. It is unpredictable and long, and I am likely to find this frustrating.  I was told that I will want some Graft vs Host Disease, but not a lot, and I have my fingers crossed for the rash and minor oesophageal problems type of disease, to be treated by steroids and other fun drugs. I hope the latter will bring some weight loss, but that might be negated by the steroids. I digress. After my last trip to St Bart’s, I had also asked Mamma Jones to find out what the chance of me dying from the procedure is. I wanted to know prior to today, so that I did not breakdown in tears in clear evidence that I am lying when I say that I do not care about facts and figures. Previously, I had been told that a full allograft for myeloma has a 40% mortality rate, which I think you’ll agree is rather high. Mamma Jones was told that my impending procedure has a 5% mortality rate, which is much more palatable. 

So that is what I knew from the various conversations I have had about Transplant Number 2. How was it sitting down and having somebody tell me in one go?  Exactly how I imagined.

I had to sign two different forms, one of them twice. The form I signed twice was not on carbon paper, which was disappointing because it is a material that really is a feat in engineering. Alas, I am left with a mere photocopy. 

In medical speak, I am having an Allogeneic Haematopoietic Stem Cell transplant, it says so on the first page. My donor, aka Big Sister is a 10/10 match (score!). In case you wondered, you can have a transplant at a 8/10 match. 

The aim of the procedure? Curative hopefully, but realistically, when one considers the philosophical meaning of ‘curative’, the aim can also be considered palliative. The key part, and one that I knew already, is that nobody knows which camp I am going to fall into. Right now, I am part hope, part realistic and part, I have no got a clue how I will manage my post Allo life.

The process of consent was very much a tick box exercise. Literally a tick box exercise. We, the Medically Trained Person and I, ticked the following boxes to show that I understood the possible short and long term effects. They looked like this:

SHORT TERM
• Nausea and vomiting

• Diarrhoea

• Mucositis 

• Fatigue

• Alopecia

• Immunosuppression

• Infection and Sepsis (particularly viral infection, differing from the concerns during an Auto)

• ITU admission

• Bleeding

• Transfusions

• Pulmonary dysfunction

• Haemorrhagic cystitis

• Veno-occlusive disease

• Nutrition

• Further treatments (DLI, Chemo, HSCT)
• Graft versus host disease in the form of acute skin, liver that may become chronic with affect on lifestyle 
To treat the above with steroids, I may encounter;

• Diabetes

• Myopathy

• Osteoporosis 

• Avascular necrosis 
LATE EFFECTS 
• Infertility (N/A)

• Male impotence (N/A)

• Menopause (N/A)

• Thyroid dysfunction

• Cataracts

• Lung fibrosis

• Psychological difficulties

• Secondary malignancies (aka secondary cancer)

Do not be alarmed. That’s what I tell myself. Do not be alarmed. It’s just the sort of list one will find inside a packet of Paracetamol, the difference being, having a allogeneic stem cell transplant happens less frequently then taking a paracetamol. I do not know about you, but I chow down one of those bad boys at least four times a day. An allogeneic transplant on the otherhand? Once in my lifetime (maybe).

In other words, this is just a list of everything that could happen. Let us put our hands together and say they won’t all happen. Even if some of them do happen, I have been assured that fixing cataracts is next to nothing when one considers what I have already been through.

After all this, all I know for certain is that I will be taking a lot of drugs for a while to manage whatever side effects I get as well as taking medication to help Big Sister’s cells do their thing. If they do not do their thing, I can have a top up. I did not dwelve any further into what would warrant this nor what it would entail.

Thus far, I have given you no figures, no percentages. I was given those and I’ll pass them on to you, but on the advice I was given on Monday, I urge you to throw them away again. Both good and bad. For if I end up being in the unlucky 70% or 5% or 50%, knowing the statistics of others, will do nothing to benefit nor influence my outcome. Get it? Good. 

• Graft failure <10%

• Cure rate 30-40%

• Acute GvHD 50-60%

• Transplant related mortality (immediate) <5%

• Risk of relapse 50%

• Chronic GvHD 50-60%

That’s it. That’s everything I was told, condensed into a blog and a four page consent form, psychological difficulties and all. Now, all I have to do is get it done. And then wait and wonder and learn. There is a great deal of learning to come. 

EJB x

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

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.