Tag Archives: recovery

Grafting

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

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

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

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

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

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

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

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

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

Read between the lines.

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

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

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

And then, what the hell is going to happen? 

Patience is not my virtue.
EJB x

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Missing Milestones

Once upon an early diagnosis, I loved nothing more than recognising, in celebration or in defeat, a myeloma milestone. Back then, in what feels like a lifetime ago, everything related to my illness was new, scary and needed to be thoroughly documented or looked forward to. All my progress was marked this way; the first day of treatment, the end of a first cycle of treatment, my first birthday with myeloma, the first year with myeloma, the first stem cell transplant, the first relapse, even the second relapse and so on and so on. And so on. Three years ago, it was so easy to identify these milestones.  It was how I got through my then treatment, which I saw as something temporary, something that could be considered fleeting in the grand old scheme of life. Using the word ‘exciting’ to describe these things is a little perverse, but let us not forget that I was once a little pervert. 

I entered a world so alien to me, that the click, click clanging of an MRI scanner was exciting. Every time something changed, developed or I was sent somewhere new, I considered myself to be getting somewhere closer to the cancer nirvana. I was getting closer to remission and a life free of drugs. With each box I marked as complete, I was one step closer to the impossible something. 

I was wrong.

I was a novice and the novice in me found everything to be noteworthy. Even if I did not make an actual note of it, I would have acknowledged it to myself and marvelled in the exploration. Until my relapse, and even in the months after my relapse, I could have told anybody who asked, how many doses of chemotherapy I had had, right down to the number of Velcade injections poked into my stomach compared to the number I had stabbed into my arm. If I thought really hard, I might have even be able to have worked out how many blood tests I had had. All of it is a blur to me now. This blog acts as my record.

Time has passed. Lots of time.

Contrary to what I may have said at the time, in the early days of My Myeloma, I found it to be extraordinary. There was something fascinating to be discovered in everything it made me do and everything I planned for. Now, My Myeloma is no longer extraordinary to me, it is ordinary. It is my day and it is my night, and it has been that way for so long, that a blood test, a biopsy, a doctor’s appointment and even a stem cell transplant feels run of the mill. Fatigue, sore hands, an aching back, unformed stools, vomiting and cancelled plans are not significant. It’s my equivalent of a daily commute to work and then the 9-5 itself. 

I am not pessimistic.  I no longer track my progress as religiously as I once did, nor am I making plans for the future. I do not, not make plans because I do not think I have a future. I do not make plans because I do not know what my future will look like. If I try to envisage where I’ll be in February, for example, I have a dream of where I want to be, but the picture is fuzzy at best. That’s just February, anything beyond that is unfathomable.  Most the time, the picture is blank. Over time, I have concluded that not thinking about it and not planning for anything, preserves my sanity and reduces the size of the box entitled ‘Dashed Hopes’. 

In my post transplant world, recovery is slow. Recovery is not only slow, it is the Unknown. I could not pinpoint what I am recovering from nor for. I think and plan in terms of no more than a week. Any more than that can feel torturous.  I wake up, hope that that day is not going to be one that features vomit and I try to do as much as I can whilst factoring in the planned activity I have for the remaining seven days. Nothing more. Nothing less. That is my existence. 

I try not to think about how long I have been waiting for things to change or how much longer I have to wait for things to change. If I allowed my brain to think about it as often as it tried to, I would be stark raving mad. Given how much I already converse by song with the dog, it do not need anymore assistance in the road to madness.

In my days ruled by myeloma, but where it is the last thing I try to think about, imagine my surprise a month ago when I was told that I was now 100 days post transplant. I was not surprised it had been 100 days already; I was surprised that I had forgotten to mark such a significant milestone. 

If somebody had asked me what Day 100 would be like prior to my Day 0, I would have said I and the Medically Trained People would have a much better indication about my medical future than we do at present. I was told that at Day 100, my care would transfer back to UCH. Most importantly, when I sat down and signed all those papers, I was told that I would be taken off the Ciclosporin at Day 100, and then we would know how much, if any, Graft vs Host Disease I would get. In the last 100 days, this milestone, or the significance of this milestone has changed.

I don’t have the immediate answers I wanted. Instead, at Day 104, the Medically Trained People came up with a six week plan to slowly reduce my Ciclosporin to zero. GVHD may occur within the four weeks after that. I know this is progress, but I am pretty certain the tortoise just overtook me. Instead of being free, I have at least another six weeks of waiting (and willing) myself to become ill.

There is always the chance that I will not become ill when I come off ghastly smelling drug. If I do not break out in an unsightly rash or poop out my insides, then all of this waiting and all the treatment could be for very little. Imagine the weight of that anticipation; it’s an anti climax that hits me every day. 

On Day 105, some 27 days ago, I returned to the place where everybody knows my name for a clinic appointment. Not just any clinic appointment. It was the first appointment at UCH since treatment began at St Bart’s. That too should have been a milestone. The problem? I felt like I had nothing to tell them. There were so many questions, but no answer. Although I loved the familiarity of it all; the more comfortable seats and the smiling faces, it failed to be the milestone I wanted it to be.  It failed because we are not in the position for them to be my primary care makers again. Instead, it highlighted how slow my progress is. I get to go back again in February, by which time, I hope the  picture is in HD. 

Fifteen days ago, when I started this blog, I received a letter. A very nice letter.  The letter was a summary of the clinic  appointment at UCH on Day 105 and contained the results from a bone marrow biopsy I had on Day 103.  I could type out what the letter said, but it is 2015, I can show you instead:
 
Paraprotein not detected’

‘NO evidence of myeloma’

A milestone if ever there was one. Seven words that three years ago would have been my cancer nirvana.   A fortnight ago, they were words that make me smile. They were  words that made my support network squeal and cry. For a moment, I paused and felt relief.

The relief only last so long. Those seven words need to come with a footnote. A footnote that is so lengthy that I was tempted to not tell anybody about them.  I wasn’t sure if I could stand their excitement. 

Experience has taught me that it can come back, that’s one thing. My Myeloma has not shown me anything else. I have never had results as good as this before, but I have been in remission and it came back. I am still in recovery from the stem cell transplants and that means I still feel weak and my days are a struggle. My weakness is like a permananet cloud. Not having a paraprotein level or signs of myeloma, does not magically make the damage already done to my body go away.  Finally, I want GVHD. I need it. For long term success, for a better quality of life, I want GVHD. I long for it. Such is my want, I have spent the last four weeks monitoring my body to such an extent that I have become a hypochonriac. I am part excited, part suspicious of every stool, itch or back pain. 

It may surprise you, given my tone, but I know I am incredibly lucky. I do know that. I have one sibling and  against the odds, she was a perfect 10 for me. We matched when so many do not. I have almost completed my fun packed 2015, and so far, my treatment has gone as well as it could have. In fact, with just 13 days left of the Ciclosporin, I know that it could not have gone any better. My energy is increasing, not as fast as I would like, but faster than the Medically Trained People expected. Even with my energy, there are many a milestone that have occurred but gone unnoticed since I walked out of that hospital all those months ago. 

Despite this, despite all of this, despite all of these positive developments, I am tired. I am tired of my ordinary life. I want so much to be able to celebrate and acknowledge the good, but I cannot. The clarity I need could not come soon enough. I want to fast forward to a life not ruled by medical milestones. I do not know if that is even possible for me and that is terrifying.  That said, if it can happen, if it does happen, it really would be a milestone worth celebrating. 

EJB X 

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18 is a Magic Number

Just over four weeks ago, on a Wednesday evening, I sat on my sofa brimming with excitement. I really do mean brimming. My cup was running well and truly over. There was so much excitement in my belly that I felt almost giddy. In me, giddiness general manifests in mumbling to myself and occasionally rubbing my hands together like I have just hatched a masterful plan. The cause of my excitement was not because it was the evening of the Great British Bake Off final and Housemate and I had settled in for a night with a takeaway, although that sort of thing does stir my loins these days. No, my excitement was due to the fact it was the eve of my annual film marathon. It was the eve of the London Film Festival. I wrote a very similar blog last year, and the year before that, so you could just re-read those instead of reading on. 

🎬🎬🎬

Still here? Grand. 

This year, unlike two years ago when I was also post transplant, there was no question in my head of me not partaking in what is a film lover’s paradise. I may have had two transplants this year, but going into that treatment, I simply told myself that by October, I would have to be ready to see one, maybe two films a day for eleven consecutive days. I did have to give consideration to my stamina, so I had long concluded that if, at the time of booking, I thought I might struggle, I would give myself a day or two off during the eleven days. But, essentially, by hook or by crook, I knew that I had to get my bum down to Leicester Square, at least ten times. My mental health depended on it.

To those with able bodies, this might not seem like that much of a challenge. Mamma Jones tells me that it is, but she’s my Mum and she has to say things like that to buoy my ego. It is now 17 days after the festival finished, and I can confirm that it was definitely a challenge for both my body and my mind. Put it this way, I no longer think I am just in recovery from an allogrnic transplant.

Prior to the booking lines opening in mid September, I set myself a realistic limit of 12 films. In reaching this calculation, I factored in how much activity I had been doing, how many films I saw the previous year (20), financial considerations and the overall weaknesses of my body that I endure daily. When the booking lines opened, I disregarded all of that and  booked myself in for 18 screenings to start on 9 October and finish on the 19 October. My response to this momentary lapse in control was ‘whoops’. The Bank of Mum was the official sponsor of my film festival, providing financial support as well as daily cheerleading throughout the process.   Inevitably, as I sat on the sofa waiting for the GBBO to start, I booked in another screening, bringing my grand total up to 19 screenings, because my giddiness had made me feel ever so slightly invincible.

To many people, including myself, there is a little bit of the ridiculous about how I approach the film festival. I got carried away. I really, did. The London Film Festival no longer simply represents an annual period of cultural indulgence. It’s become how I prove to myself that my will still has some say in how I conduct myself and spend my time. That is an important thing to remember every day, but LFF is a handy reminder that even if my grip is weak, I must still cling on to the things that make me, Me. I am not just a Myeloma and chemotherapy riddled vessel, despite the occasional propensity for me to think this.  

To me, and I think it is evident to my nearest and dearest, it is imperative that this part of my life does not stop. My brain couldn’t take another loss. What I get from throwing myself into multiple dark rooms, not talking to strangers over x amount of day lasts way beyond the days I am doing it. I’d had two years of testing the theory.

No pressure then.

🎬🎬🎬

In the months prior to the EJ Bones Film Festival launch date of 9 October, I had managed to get on a bus four maybe five times since Transplant Number 2 and not once had the trip been longer than 20 minutes.  I had probably been out of the flat or Mamma Jones’ house for at most, five hours at a time, and the majority of that was probably hospital related. If I did for some inexplicable reason find that I had exerted myself for more than say four hours, I would then need to spend the entire next day relaxing. I also required a good 10-12 hours sleep a day in order to function.

  
19 screenings over 11 days did not give me much leeway for any ‘Bad Days’ and I get by on being able to have a Bad Day. Although I did get carried away with my bookings, I had created a schedule that would use the least amount of energy. If I was seeing more than one film a day, they had to be back to back, so that I did not have to do the 100 minutes round trip into the West End more than once a day. Bar two nights, I ensured I was home by 20:00hrs so I did not not interrupt my drug and sleep routines. I had only booked myself aisle seats to allow my butt more space to wriggle. Any socialising outside of the festival was strictly prohibited. In essence, I had accounted for my every minute during the festival in advance of it. I even planned my meals. It made me extremely anti social. Beyond that, I had blanked out the week after it to recoup, which only added to my misanthropic behaviour. Those 11 days in the middle of October, were my days and I put my hands up and admit that I approached it all with only myself in mind, knowing that it would make me feel better. In fact, to me, it was medicinal. A theory backed up by more than one Medically  Trained  Person. 

To put my energy usage into some sort of perspective, a few days before I found myself struggling to contain my excitement on my sofa, I asked a Medically Trained Person if I should still be limiting myself to the 5-25 minutes of activity a day. I was told that if I could do more, I should do more (but not too much), but at that stage they do not expect people to be able to do  much more than 25 minutes.

I think I have hammered home the point that my plans were ambitious.  

Did I do it?

🎬🎬🎬

Of course I did. 

  
I missed the last screening. So, my film festival finished on the 18th with 18 screening and. I do not consider this a failure. Firstly, I got a refund on the ticket I did not use (ever the bonus). Secondly, I had seen 18 screenings in 10 days and by the evening of of the penultimate day, I was nearly catatonic. Sometimes, pride should be taken in knowing when enough is enough. Given the fact that I could no longer follow a five minute conversation, I knew that a two hour long Chinese musical starting 15 minutes after my usual bedtime was out of the question. If I had gone, I would have only done so, so I could tell you that I had seen 19 screenings and not the 18. 18 was enough. 18 was the magic number that is going to carry me through the next however many, long and dark months of the Unknown.

It was so hard. I thoroughly enjoyed myself, but my will and my body well and truly battled it out. Housemate lived with a zombie for the duration. Some mornings I had to contend with vomit or a similar issue from another orifice. The experience not only highlighted the level of my fatigue othe limitations of my morning drug regime; it reminded me that I have ‘problems’ with my back. Believe it or not, I forget about my back. I suppose 100mg of slow release morphine a day can do that. The same can also be said for spending nearly three months predominantly on my back.  The bus journey and sitting in a cinema seat quickly brought me back to a face squinting reality. 

In getting the bus and being around the general public, I was also reminded that the outside world is a hard place to exist in. It’s not considered acceptable to lie down when you are out, for a start, there are no beds. One of the cinemas had a footstool and I thought I had walked into paradise. Body issues aside, I suddenly and frequently had to factor in that there are the people who are oblivious when it comes to my disability. Mind you, my disability is invisible, so I can only allow myself to be marginally bitter about this. Leicester Square at midnight on a Friday could only be described as a Danger Zone for somebody used to the quiet of their flat. Many days I struggled to get a seat on the bus. There were many days I struggled to walk to the bus. Then there was the one day, when I was sitting in my seat ready to see the latest Studio Ghibli, when a woman on her way to her seat told me that standing up to let her through would give me some much needed exercise. Needless to say, I took her life apart with a disapproving glare. I just told this story to my favourite Medically Trained People, and they responded ‘if only she knew’. Indeed.

In the days that has turned into weeks following the conclusion of the festival, I have been extremely tired and my brain has been in quite a muddle. I started this blog on the 10th October. I feel like all my energy has been frustratingly zapped from my body, but I know that this is just an illusion of my own making. Of course I am tired and I do think some of this is caused by me running before I could walk.  25 minutes, remember the advisory 25 minutes. I went from doing a little every other day to being out and engaged for at least five hours a day for just under a fortnight.  On one of those magical days, I was out for over 12 hours. For those 12 hours, I pretended I was normal. 

During a few moments of existential despair, I have  questioned if I took on too much, whether 18 was too much and whether instead of  giving me hope, it has set me, physically at least, back. A physical setback quickly becomes a mental one too. With the help of my occasional  friend Reason, I realised that I was being missing one crucial detail… I am now doing more, and the consequence of doing more, is feeling tired and being more aware of the very real need for my bed. 

The EJ Bones’ Film Festival could never set me back. It’s spurred me on. The giddiness I felt on my sofa was not met with an anticlimax.

I would not be capable of replicating those 11 days again today. I probably would not be able to replicate it again in a fortnight. The key point for me to remember is that I did it once. And, if I could do it once, less than 100 days after my allograft, what the hell am I going to be able to achieve in 18, 50 or 100 days from now? More importantly, how many am I going to be able to see next October? The answer isn’t endless, but I know it is bigger and that is something to cling on to.
I am glad I set myself such a busy challenge, which means I am even happier that I was able to do what I needed to do. My will won out. I won that battle. Now, I just need to find a new one.

EJB x

🎬🎬🎬

For those of you who are interested, I saw the following:

1/ Grandma (USA)

2/ The Club (Chile)

3/ The Daughter (Austrailia) 

4/ The Measure of a Man (France)

5/ When Marnie Was There (Japan)

6/ Son of Saul (Hungary)

7/ Room (Canada/Ireland)

8/ 11 Minutes (Poland)

9/ The Assassin (Taiwan/China)

10/ Evolution (France)

11/ Chronic (USA)

12/ Carol (USA)

13/ Desirito (Mexico/USA)

14/ Cowboys (France)

15/ Dheephan (France)

16/ Anormalisa (USA)

17 & 18/ A selection of short films

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Yes/No

In my journey thus far, my brain has always been more willing than my body is able. This usually means that I say ‘yes’ to a myriad of things and then panic, sweat and have a sleepless night when it becomes apparent that I am going to fail. That’s really how things have worked everyday for the last 19 months.

The key point here, I guess, that I would like to highlight with lines made by a ruler and a red pen, is that I am almost always willing and more often than not, I do try to do what has been asked of me. Occasionally, I even succeed. A lot of the time, I fail. That’s really how things have worked everyday for the last 19 months.

Fortunately, my days at the moment are met with more success than failure. Providing I am sensible, I can achieve what I set out to achieve on any given day. The success is dependent on a number of factors including me having had to learn the power and advantages of saying ‘no’. I find saying ‘no’ very hard indeed, but in doing so, I am able to achieve much more than I have achieved in a very long time and that is not how it has been everyday for the last 19 months.

Learning to say ‘no’, or allowing myself to, as bittersweet as it is, is allows me to improve. There have four occasions in this last week, where every part of me has wanted to either go out or stay out, but some being separate to me has appeared in my brain and forced me home. If I am perfectly honest, most of the time when I am
in this predicament, I imagine what Housemate would say to me in the particular scenario and then act accordingly. It’s a tremendous amount of power to have to be sure. On Tuesday, the pain of leaving my party at 22:00hrs in a public house, to go to bed, was great. Big Sister had to validate my decision on the return to my room, because I saw it as a symbol of my losses. On Thursday, my decision to be in by bed by 23:00hrs also had to be validated. In my pre-myeloma life, I would have been aware of my need to rest, but I never acted upon it. Now, if I face any chance of living a normal life, I have to act upon it, and act upon it I do, multiple times a day.

It saddens me. Restricting myself, censoring myself if you will, saddens me. My Myeloma did that. But, if I did not do these things, I would not be able to tell you the next part of my tale….

And now, I boast.

A fortnight ago, before I got angry at the Velcade fatigue, I worked a 31 hour week and had an almost full day at the hospital. That my friends is called progress. I barely noticed my working hours that week, but I suspect that is because I had said ‘no’ enough times that I spent my evenings on my bed with the dog. Last week was met with a similar output, minus the weekend of Velcade fatigue, which was greatly appreciated. I worked for 33 hours this week with a day of annual leave. Boom. On Tuesday, I was awake for 17 whole hours and outside of a bed for 15 of those hours. Sure, I slept for 11.5 hours the night after, but that is still progress. Progress that can be backed up with actual evidence. Evidence by the way, that we would not have, if I had not also rediscovered by memory.

I am slowly trying to celebrate these successes. The pride I have in being able to work 31 hours a week, has been evident all week long and that has surprised me, because I think I have told everybody I have come into contact with that this is the case. I might have even told people who do not know me that this is the case. To those people, I am probably just lazy. The people who know me and have listened, congratulate me. Rarely do I go into the details of what this achievement means I cannot do, but that, I hope by now, is evident. In three weeks time, I hope to be able to work a 37 hour week, whilst continuing with my current treatment.

The right balance of the yes and no, continues to evolve and I have no idea what the ‘right’ balance will actually look like. It doesn’t look like what I am doing now that’s for certain, despite my boastful successes above. It cannot look like what I have now, because I am yet to factor in my pain management as well as my fatigue management. No doubt, a few more no’s, a little less spontaneity, a bucket load of tears and a haemorrhoid cushion will have to surface before we reach that level of paradise.

EJB x

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The Status Quo

It has come to my attention that I have been quite remiss when it comes to talking about my health of late. It is not because I am absolutely bored rigid from talking about my body. I am now all about my feelings and that, bless you, is all I have been sharing of late. A lot of people do not know that it is very important to be in touch with one’s emotions, I am not one of them. I am sure, to an outsider, my relationship with my thoughts can come across as some sort of self indulgent codswallop; these outsiders obviously have no idea what they are talking about. Fluffy is important, equal to the reality.

The truth is, apart from my permanent, self diagnosed, severe IBS, from a medical view point, every thing is *okay*. I do not want to jinx it. On Thursday, I was told that was I doing “incredibly well”. Take from that what you wish, I have, and some of that may have come with a hint of paranoia. I assume that comment came with the caveat of ‘all things considering’.

Since the 7 November, I have two clinic appointments and these, if we remove the pressure I place on them, have been relatively nondescript. In December’s I was asked whether I was going to have an allograft (donor) transplant when It comes back as, if that is the case (it is), the Medically Trained People will plan for it. Personally, I found this sort of talk premature and I did not appreciate it. The rest of the my clinic talk has revolved around Velcade side effects, MRI results and my ongoing fatigue. The latter irritates the whatsit out of me, but I am still told that it is normal. I do not want to be normal. I want to be above average and not spend my weekends in bed because I overdid it in the week. I also do not want to be embarrassed about not having the energy to get out of bed. I am told this will improve. I suppose it is, because the need to stay in bed of a morning is diminishing.

I have tackled a cold or two, it is difficult to be precise because they go on for so long, distinguishing between the two and finding the start and finish, is a big fat waste of energy. The last one/two lasted for a cool three-four weeks, grew into a chest infection with a return of my childhood asthma and the requirement of an x-ray. This too, I am told is normal, although I view it as setback. My long sniffles did mean that I had to see the Medically Trained People three more times in between my appointments and including my long awaited return to my GP.

I get very special treatment at my GPs now. I would tell you about it, but I fear I would make you jealous. There, my general practitioner informed me that I have to have a very low threshold when it comes to contacting them. Everybody I have mentioned this to have sought clarification on this statement and thus, I took it to mean that they want me to phone them all the time. I will not of course, but maybe the next time I get a cough that sounds like I am vomiting, I will not wait for a week and a temperature before I tell anybody.

As things stand, because I really feel people need to know exactly what is happening in my life, I am still receiving Velcade once a fortnight and will continue to do so for the foreseeable future. Apart from the bowel issues, the injection makes me extremely tired in the 24 hours after the injection and this then will be proceeded by a period of insomnia. I have the occasional dizzy spell and the familiar desire to chop of my left arm when I am not doing anything else. The hope is that these side effects do not worsen, because that, I am sure, would be bad on so many levels. My energy levels are improving, albeit very slowly, and I pick up bugs quicker than I can walk a quarter of a mile. I have a paraprotein level of 5. I have been referred to a physiotherapist, whose job it will be to ease some of the pain I experience every live long day and then allow me to reduce my daily dose of 60mg morphine sulphate. And finally, I am almost certain that I have now gone through the menopause and I am, by default infertile. How do I almost certainly know this? Well, I have not had to visit a certain aisle in Boots since August for a start. I still get hot flushes, but these come in weekly waves and I a drenched (quite literally) at the moment. I will find out for certain on Valentine’s Day, I cannot wait. I also think I need to see a chiropodist but this has absolutely nothing to do with having myeloma, and I will probably never speak of my toe tails again.

EJB x

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Disbelief

For the last fourteen days, I have wandered around the corridors of my flat in a state of disbelief, doubting my ears and those belonging to the head of Mamma Jones. When I was bored of that, my brain waited for the other shoe to fall, because in my world, it almost always does. The shoe drops to the ground, damp and covered in holes, and myeloma wins some more in this game we call My Life.

Let’s face it, since the 17 August 2012, my life has hardly been the warehouse party I would have liked it to be. There have been ups and there have been downs. There have been good cylinders and bad cylinders. There has been treatment and after treatment and setback after setback. I feel like my stoicism, made way to a pessimistic realism disguised with a smile and nifty wordplay.

The last 15 months have not been easy, just in case you were in any doubt. Anybody who wants to know that can know that, because I have recorded them for all the world to see, accompanied by a plethora of grammatical errors and melancholy. The fault there belongs to the drugs and not to me, I assure you. I was once as hard as nails.

The last 15 months has changed me irrevocably. Sure, much of the old me is still about, but to be dramatic, I am not what I once was and nor will I ever be. My Myeloma and me will be forever entwined; the blood sucking, life zapping, filthy bastard that it is. We’re together now and that is how it has got to be.

Two weeks ago, I heard something, four times, that defied my expectations. Unlike many people, who I wanted to greet in a dark alleyway with a pair of nunchucks when they opened their mouths or touched a keyboard prior toy transplant, I did not believe that my transplant would give me a remission. At some point, I was told that in all likelihood, this would not happen. To protect myself, that is what I had to expect. After the dogged stubbornness of my disease, the chances of my transplant failing right off the bat, were high. And still, I went in fighting, backed up by my Support Network, waiting there like a fleet of Lancaster Bombers, with teddy bears on board to protect and comfort me.

And here we now are, back to that pesky disbelief. I did not want to write it down for fear of jinxing it, thinking that I would force the gods that be, the Medically Trained People that is, to shout “CORRECTION, it’s not over, we’re giving you another round of treatment because we have to, and thus, you cannot resume your life.” I definitely did not want that to happen. I do not want it to happen.

I may have uttered the words to one or forty people close to me, but I have not believed them. At a time when I imagined I would be singing and dancing and prancing, I walked around like I was suffering from concussion. I cried. Even Mamma Jones drew a tear and that just plain freaked me out. I have made practical steps that somebody in my position might do, like plan a return to work, spend a few nights pretending I am 21 again and slept, but it did not sink in. I would not let it sink in until I received it in writing. Until I had the proof I needed to know that for however long I have, that I am in remission. There I said it. I am in remission. I don’t think I am in remission. I am. It’s not how I imagined it, nor did it come as quickly as I had wished, but it is here. I now have evidence that there is no evidence of myeloma, and that made my day yesterday.

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I am in remission. I might just say it again, because even with the proof, I still don’t quite believe it.

That damp, dirty shoe is going to fall at some point in my future, but for now I am going to exhale like I have never exhaled before and relish in this feeling that after 15 months of illness, sickness, treatment and limbo, I am free. Well, as free as I am ever going to be from this. And that fact makes me do something I had yet to experience and that is to cry rivers of joy. Joy and relief.

Those of us unfortunate enough to have myeloma know that the magic word of which I speak does not mean a reversal of fortune and a physical rewind to a pre myeloma life. Everything that poisoned my innards, has left a mark, and now the challenge is to learn to live with that. I still experience pain, I am still in recovery following the Big T and I am still required to attend the hospital and receive the fortnightly injection of Velcade. This is why we are intertwined. The story goes on, and hopefully, on and on and on.

In time, I will learn that this first all consuming 15 months were only part of my story. I have to learn to live with My Myeloma now, I have to properly enter the big wide world and discover my limitations and exceed its expectations, and I hope that I will continue to be surrounded by the people I love for the ride.

Right now, however, and I mean right now, at this instance, I can officially say that after so much, so much time, so much pain, so many needles, so many stem cells, so many drugs, that this chapter, this volume, this tomb, and whatever else I have called it, is over. It’s done. It’s closed.

The only thing left to say is, my name is Emma Jane Jones and I am in remission.

EJB x

To be continued… For sure.

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Broken Record

Last week to my surprise and utter disappointment, I was fatigued. My fatigue was such that I feel like I have spent the last eight days in a haze and last Monday was just a moment ago. The hours pass too quickly for my drug altered mind. I knew on the Sunday before the Monday, that I was tired and I had probably, maybe, most definitely, pushed myself too much in the previous week. I had subsequently factored that into my Monday. Monday would be a rest day.

Monday was indeed a rest day, as was the Tuesday and Wednesday, and now we are back to one activity a day. To me those days last week, were more than rest days, they were days spent feeling ill barely moving. Scared that I was perpetuating this bastard, and worried that this sort of behaviour breeds more of this sort of behaviour, I forced myself to do some activity outside the compound. During each activity, I felt under the weather and experienced withdrawals from my bed. It took over. I spent the rest of the week doing the odd activity, but everything was a struggle. If I pushed myself in any activity, I paid for it after. If you feel like I have told you this before, it is because I have. I am a broken record.

I felt like I had regressed. My energy levels were reminiscent of me four weeks ago. I have been told that it will take a while for the fatigue to subside, but I expected my recovery to be made up of gradual improvements. I did not expect and nor do I want troughs in my peak.

The troughs are grossly unfair. I so much want to be able to improve. I can just about handle the speed as long as I am not reverse. I want to be able to tell people that I have done more with my day than the dishes. I want to have done more in the day than my dishes. I want to be able to go out for lunch and not follow it with a four hour lie down and that is on a good day. I do not want to be predictable. Two weeks ago, I felt like I was getting there. Last week, I did not. Today, I am still climbing out the trough.

Am I making it worse? I sincerely hope not, but then, if I were making it up, at least I would be better. I beat myself up over it and that is something I promised not to do. My crashes are not my definition of relaxation station, in case you thought I spent them in clouds that smell like lavender. They are fraught with guilt, frustration and waiting, and not sleep. I am a broken record. Napping would be preferable. Last week, I actually yearned for my post treatment nap, so popular during last season’s PADIMAC trial.

Most of all, I miss my brain function. I want to sit down and complete a task. I want to be able to recount more than what I have read in the column of shame. I want to follow every conversation I have. I feel like I am missing something great. Right now, there is no tangible achievement in my days and that makes things go terribly quickly. It a loss.

Not one to sit on my arse about this, I did seek some advice. The Macmillan booklet on the issue of drug induced fatigue recommends keeping a chart of the peaks and troughs to assist one in planning their days around them. I suggested that people did it so they could look back and identify improvements to give them hope. I for one struggle to recall how I was on any given day because the fatigue is not just about being tired, it is everything I said above and more. Memory lapses make me even more of a broken record. Anyway, I think the chart is a marvellous idea, I am just too goddamn tired to complete it.

I’m not where I was at the start of August, but then I am not where I was in May either. I want to be able to offer more. I want to change the record. I am bored of it and I am bored of people telling me it will get better.

Clearly, I need some work on my patience.

EJB x

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The Good Fight

A wise person once said to me that it would take time to recover after my transplant, both physically and emotionally. The person who said this is far more pragmatic and sensible than I, and added that I may feel different after my stem cells had returned to my body. Clearly, this was a conversation that was had before my transplant. Clearly, she was correct. I do feel different and I am not talking about my back.

A transplant is a transplant is a transplant. Most of the physical side effects can be predicted and there is a desired outcome. The Medically Trained People expect certain things to happen, I know that because they told me roughly what was going to happen at various stages along the way. Repeatedly. In addition to that, I read literature from various charities and collected anecdotes from people whether I wanted them or not. The emotional toll of what was going to happen was rarely discussed.

I was excited about my transplant because it signalled a possible end, but now, in limbo land, I feel empty. I’ve been running so fast for a year, working towards something, and now, I have done everything I need to do, all I have is waiting. It is an ever so subtle difference, that at times, I feel only I get. I remember many months ago, somebody who had a transplant telling me about their post-transplant depression, and I did not understand why they would be depressed. Everybody’s cancer is their own and I understand it now.

I have spent seven weeks beating myself up about this. I am stoic. I have reached this point in my journey with my head mostly held high and my glass half full. I am supposed to be a motivator. I am supposed to smile and let everybody looking at me know I am okay. I should not feel like this. This, by the way, encompasses a lot and with this, I feel like I am stuck on repeat. So, do yourself a favour and stop reading now or grab a tissue. It is uncouth to blow your nose on your top; I am learning that daily.

In the first few days in hospital, when I was still excreting fluids from my bum hole on the hour, I felt like I had lost my ability to reason and to problem solve. Now, with the weeks gone by, I know I have. Simple things feel difficult and by simple, I mean simple. Deciding what to have for dinner is no walk in the park, it is a headache. So imagine how I feel when it came to organising getting a new bed and wardrobe (I haven’t done it) and deciding what day I was going to return to London. Do not even get me started on my financial issues. I feel like Podd.

I have also discovered that my lack of reason, almost always means that I cannot stop myself from blurting out my thoughts and feelings. I do not need to paint a picture of this, for I sound like a whining arse wipe (which makes me feel worse by the way), but I am going to ram it down your throats anyway… If I feel sad, upset or angry, I am going to let it out. All my sense tells me not to, but I cannot stop myself, especially if we are close. As Mamma Jones explained to me yesterday, not everybody is her or Big Sister, and are programmed to take it. Last Sunday, in the middle of my worst breakdown yet, I believe I said that my life might nothing, none of my friends cared about me and I wanted to die, which led Big Sister to tell me to ‘get a grip’. I thought that was mean. That is how I felt in that moment. My response was something along the lines of saying that people do not understand what is going on inside my head. If I were reading this about somebody else, I would tell me to get a grip too. It does not feel up to me. Let us not forget that I am also going through the menopause, albeit real or fake.

Don’t get me wrong, sometimes, I am still a hoot, but my wit seems to be fighting an uphill battle for attention.

My excitement pre transplant, evidently, has diminished, it is not completely gone, I am a fighter after all, but it has gone right down there with my bank balance. Others are excited about the future and I get pep talks about how things will improve. The truth is with the transplant is that sort of talk and expectation, that talk about the improvements to come, anger me now and make me feel frustrated. Especially when the pom-poms are coming from secondary experience. Personally, I can barely think, let alone talk about what is going to happen to me in October, November, December, or how much I want to get back to normal, or what getting back to normal means to me, without crying. I cannot finish those sentences. That is no exaggeration.

On a number of occasions since I came out of hospital, people have asked me those very questions (what happens next, what are you planning, do you know when you will return to work, blah, blah, spew) and told me what I have to look forward to and every time, unless it is me instigating it, I feel like somebody has stabbed me in the stomach and then stuck their thumb in the wound they created. The thumb makes me cry. My voice breaks, and I have to use all my might to suck the tears back up again. In the last year, I have become very good at this, sucking the tears back up again, but in my world post transplant, it is much, much harder to do. The tears just come or I sound like a man. On one particular occasion, I was on the phone to a senior work person, but fortunately, the senior work person was oblivious to what was going on on the other end of the phone. Sometimes, there are reasons to be thankful for the temperamental mobile phone coverage in the fens. It was my favourite instance, because I would never, ever allow somebody of their kind, to witness that type of weakness.

The future everybody talks about so eagerly, scares me. I do not want to upset them. On the few times I have felt strong enough to let that excitement in, I plan in my head. I plan meals, cinema, theatre and holidays and I come across other hurdles and disappointment. I am not clear if they are actual hurdles, but my lack of reason makes mountains out of molehills. It is a prison. When my post transplant world comes, when I am in it because right now is not the world I envisaged, I want trumpets, bunting and kept promises. Right now, I just want support, understanding and reassurance.

I know that my up current struggles are not helped by my isolation. Since I was discharged from hospital, prior to Sunday afternoon when I attended a two year old’s birthday party, I had conversations in person or on the phone with just twelve adults, about half of these were not myeloma related. It would be fair to say that whilst I was in hospital, much of my conversations we also myeloma related, nearly all of them in fact. My transplant seems to have defined me more than my other treatment to date. I am more than my transplant and My Myeloma, and I deserve to be spoken to as such, otherwise, I end up having the same conversation again and again, just with different people. In terms of contact, what I mean is text message. Rightly or wrongly, I feel let down.

Based on all this, in terms of the effect on me, all I can say is, do the maths. It’s Key Stage 3 sort of stuff. If you cannot do the maths, see the bite size example below:

Isolation + boredom = insecurity + paranoia = tears + sadness

β˜”β˜”β˜”β˜”β˜”β˜”β˜”β˜”β˜”β˜”β˜”

I am not embellishing anything or seeking your pity. I want understanding. The thoughts I mention really have gone around and around my head and I have been taking this trip for weeks. Not every day mind, I do get the occasional rest day. In the last three weeks I have made several attempts to write this blog. I have questioned what has happened to me, what is happening to me and my future. I have played out the various scenarios in my head. I have been up and I have been down. There is however, only one time I have been absolutely certain. Somebody, who was recently diagnosed with the wonder that is myeloma commented on my blog and said they did not think they would take the medication to treat not cure it. The comments saddened me, but they also made me realise something about me, that in spite of everything I have said above and all the other side effects, I would never not fight this. Even if I am have no money, my support network get sick of me, I cannot shift the weight and I remain bald forever, I would continue fighting. The realisation was a relief, because on the dark times, I thought I had lost sight of it.

This period, is just part of the battle after all?

Anyway, I can still laugh at farts and stuff so I am bound to be okay.

EJB x

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The Red Herring

What does feeling better feel like? Are we there yet? How much of the biscuit have we had? Half? Three quarters?

Yesterday afternoon, I told somebody I could see it. That I could feel it. feeling better. In my sleep on Thursday, I finished a bottle of water and when I woke, I requested another bottle. I was drinking. I wanted to put a bra on. I also had an improved attention span, accompanied by a reduced desire to sleep. I did two jigsaw puzzles. Such was my improvement, that I took myself out of my bed and onto the sofa. I moved rooms. I also cooked something in the oven. I had faith that I would not fall asleep in the 20 minutes it took for me to heat some chips.

I was not capable of standing for a long period of time nor was I able to explain the principles of utilitarianism, hell, I still cannot of getting dressed, but I felt better. To me, yesterday’s improvement did not feel subtle; it felt magical. To anybody else looking in, I am sure I still looked like a weak person, with cancer, in need of assistance. The changes I experienced, to them, would have been subtle.

My physiotherapist recommended that I keep a diary of this period, noting what I could not do, by day, so I could look back a few weeks later, and realise the improvement. Up lifting, page turner. I should have known then, that this was going to be slow. And the improvements were going to be subtle. I am not keeping a diary by the way. I do not need further evidence of my regression to childhood.

I hate the subtlety of this. I hate giving my body time. Hatred and frustration defines me at the moment. I want improvement to move at the speed of light. Failing that, I would take improvement at the speed of sleep. I want to fall asleep feeling like I currently feel, to wake up and find that I can get dressed, stand up for longer than five minutes and leave my house for six hours. I am not unrealistic. After those six hours, I would expect to be tired and I would go back to bed. I just want those six hours. In that six hours, if I could not leave my house, I could bake or hone my arts and crafts skills. I could do something that is not lying.

The mental anguish this subtlety puts me under is worse than the physical pain I have to endure. My physical worries are not great enough to make me not notice my incapacitation, but they have not improved enough for me to be where I want to be. All this does is give me time to think, time to dwell and time to get mad.

It is a wonder that I am able to speak to people without shouting or crying the minute I open my mouth. I feel like doing both, but the latter for sure, would be a real waste of the water i do drink. I presume that the opportunities for me to converse are currently so few, that my survival mentality kicks in, and I have to be nice and calm, to ensure that they come back. I have to not show I am upset. I become grateful.

I am constantly being asked whether I am feeling better, and I appreciate that of course, but my improvement is too slow to provide am answer. If I answer with a negative, is that just me, being negative? If I answer positively, people misconstrue the significance of the improvement. Better is not better.

Yesterday morning I did feel better. My ability to drink more than a sip, was the key indicator. For a period, I was also able to converse. I was walking around. I did a fruitless search for dead rodents in the garden. For an hour, it felt like a school holiday. And then, it did not. I couldn’t do those things. Better is not better. My deterioration was not subtle. Every gulp of water I had had, every morsel I had eaten, during my period of good health, rudely and uncomfortable made a reappearance. Once my stomach had emptied itself, without the need for digestion, I became a weak little thing who needed her mummy. Vomiting is never fun.

And that brings you up to the present. I am in bed. I am weak. I am not wearing a bra. I am frustrated. I also keep forgetting that I cannot lean or roll to my left, without causing a lesion headache.

All of it, really is very annoying.

EJB x

P.S. Thursday’s Full Blood Count did not contain any shockers by the way. My boaster from the previous Thursday had worn off, but everything seems to be ticking along.

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The Recovery Position

Take one hefty dose of fatigue, mixed that with an equal measure of impatience and what you end up with is a toxic amount of frustration.

I am very frustrated. I am the picture of horizontal frustration.

As with everything related to this procedure, the frustration grows from me not knowing how long this fatigue will take to get lost. I have not lowered my standards enough to say ‘do one’. I still have some brain cells working. At least I think I do. I know that the fatigue can last a long time. I also know that it might only last a few weeks. I know, that it is slightly different for everybody. What I do not know, and what nobody else knows either, is how long I am going to be bed bound for? How many more times am I going to wake up hungry, and then have to wait for three hours to build up the energy to serve myself a bowl of cereal? How many James Bond films am I going to start, but not finish? I am currently on five, by the way. One would say it is a blessing I have seen them all before. (Sean Connery in short shorts). When am I going to experience thirst again? More crucially, when am I going to find the energy to wash myself. It’s been four days now and my right armpit is pungent.* Seriously.

Home is much better than the hospital. I should get that point out there right now, in case anybody was mistaken and thought I wished to return to that sterile environment. I don’t. I think that when I returned home on Friday, I imagined, actually, hoped, would be more appropriate, that the fatigue, would mean me, being a little sleepy as I made my way between the rooms on the ground floor of the house, enjoying my various box sets, whilst people did things for me. Essentially, I fancied a summer holiday, of the type where I got to watch Independence Day on repeat and get obese. The reality, is far less exciting. The reality is that I cannot look after myself. Not only that, but the reality means that I cannot really focus on anything long enough to kill some time, and I am confined, predominantly, to my bed. The family do their best to get me up and about; on Saturday this led to me having a power nap in the back garden, on Sunday, I was forced to paint a boat. On Thursday, I am forcing myself to get dressed. I was going to do this before I found out I had to go and have a blood test.

Patience would go a long way right now. I have never had any. The nice ladies with the soothing voices in Macmillan say that I lack patience because I do not like losing control. I think they are correct.

If I was not me lying in this bed with the bedsheets I do not like, I would probably offer the pathetic, bald figure who looked something like me, some advice. I would say that I only had the Melphalan three weeks ago, and the transplant was 20 days ago, the Medically Trained People say this feeling is perfectly normal and let us not forget, I did get out of hospital earlier than expected. Everything is as it is expected to be and it’ll work itself out to a point where I can bake a cake. I would also add, because this part is important, to keep my head up; medicine may advance… I am wise of course, but logic isn’t really a friend of mine right now. Logic is not going to make me better nor is it going to make me feel better. Logic is not going to change the fact that My Myeloma means that I will inevitably feel this way again at some point in my future. Put that into your smiles and mindless banter and smoke it.

The good thing about my current situation is that, in spite of my impatience led frustration, I am actually doing what I have been told to do. I have let the fatigue in. It’s in my bed with me and that is where we live. I am allowing people to look after to me and I am not getting annoyed about it. I sleep when I need to sleep, which in the words of Vivian Ward, is pretty often. That doesn’t really work because she was talking about being trapped in a tower by a wicked queen. Mamma Jones is not wicked. Myeloma is.

I believe time will heal this current wound. I just wish I knew whether it was all going to be worth it. I think I know what the answer will be, but I have to be moving around again to feel it.

EJB x

* The shower comes this evening, thank goodness. Fortunately, I have lost a lot of body hair. I have to wait for there to be other bodies in the house and I do not think the dogs count.

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