Recuperation

We’ve got to hold on to what we’ve got
Living on a prayer – Bon Jovi *

Day +50ish

It’s been a while since I sat at my desk. I have decided that, as of this week, some element of normality must return. So I’ve turned on the pc, and just waded through several months of unopened email. Nearly 1,000 messages. (Why does junk mail come in waves? A lot of spam about nail fungus.) So, while I’m here, an update for you.
I’m doing ok. I’m very bored, but that’s a minor complaint really. My blood counts are alright – could do with a bit more red in my blood; hopefully that will come with time. But I’ve avoided any nasty infections (so far). And I’m regaining strength, though it comes slowly. Overall, I think my recovery has been easier this time than last, which is a pleasant surprise. Will be nice when my hair starts growing again, and I’m looking forward to having some actual energy.
My relationship with this blog is a bit conflicted at the moment. I know it serves a purpose, but I prefer, mostly, to face the other way. I have a stash of topics that, at some point, I will write up. On the transplant process. On medicine that makes you feel ill. On pain. On mortality. I’m not sure when I’ll feel sufficient enthusiasm to commit these to binary. For many of you, though, who only check in here to see how I’m doing… don’t expect too frequent updates. I’m 50 days in to a 100 day recovery programme. I’ve no evidence yet of how well (if!) it has all worked. I’m intending to progressively return to “normal”, and see how it goes.
One ongoing issue worth a mention, is my poor old back. I’m posting a recent MRI image of my spine. You can see just how many of my vertebrae are crushed, and how curved it is as a consequence. It has definitely got worse, these last 2 years, which is a little scary. What will happen next time I relapse? I’ve been told that I should expect that the damage is progressive – i.e. it will continue to deteriorate. I find this quite difficult to face up to (I find the picture hard to look at). No matter what treatment I endure and what remission I achieve, I’m left with this creeping disability. Even if they “cured” me, I’d live forever with this. I’ve recently been in front of the neurologist and an orthotics doctor. We discussed every possibility – from surgery to doing nothing. There aren’t any great answers. Surgery really isn’t a credible option: it’s quite likely that, were we to fix part of my back up (by injecting cement to rebuild vertebrae, or by adding some metalwork), all that would happen is it would fail (break) at the weakest point. I’d be worse off after that. I am fearful enough of ending up in a wheelchair, without doing something that might accelerate the problem.
But otherwise, I’m on to a loser. My back lacks the strength to hold itself upright, and even a small amount of curve means the weight of my head (heads are quite heavy) is pulling the whole thing forward. It was comforting to hear the doctor acknowledge what I already know: that standing still is worse than walking; that I need to spend quite a lot of time lying flat on my back if I want to maintain any kind of posture; that it’s unlikely my back will ever be free from pain. Our plan for now is that I am to be fitted with a brace, and see if/ how that might help. The risk is that using a brace leads to loss of muscle tone, making me increasingly dependent on wearing it. But I’m hoping if I moderate how often I put it on, I might be able to mitigate that. It’s got to be worth a try.
I didn’t understand, when I got my myeloma diagnosis, that disability was part of the prognosis. But I know now that similar problems affect lots of people with mm. It really is a bastard.

* This choice of lyric is somewhat deceptive. The song came in to my head for the more obvious reason that 50 is ½ of 100.(Woah, we’re half way there!) I’m pretty sure I used the same bit of Bon Jovi, 15 years ago, when writing about crossing the equator, while travelling overland (mostly by bus) from Antarctica to the Arctic. If you’re paying that much attention, I salute you. I liked Bon Jovi when I was a teenager, but only really because I liked a girl who liked Bon Jovi. (She’ll probably read this.)

I like a bit of lateral-ness in music trivia. If anyone ever asked me to write trivia quiz questions (if they’ve any sense they won’t), then one of them would be the names of songs that do not feature on the eponymous album. Some classic examples are “Houses of the Holy” by Led Zeppelin (song ended off on the subsequent album, Physical Graffiti), “Waiting for the Sun” by The Doors (ended off 2 albums later, on Morrison Hotel) and “Sheer Heart Attack” by Queen (3 albums later, on News of the World). There’s a few good examples from 90s indie: “Bring it On” by Gomez  was on their 2nd album, Liquid Skin. Meanwhile “His’n’Hers” by Pulp, “Screamadelica” by Primal Scream, and “Going Blank Again” by Ride, were all only released on EPs or as b-sides.  Are you with me? Too obscure? If you know any more, show off in the comments!

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Thal

Here he comes, he’s all dressed in black. PR shoes [*] and a big straw hat. He’s never early, he’s always late. First thing you learn is that you always gotta wait. I’m waiting for my man
Waiting for my man – Lou Reed

End of Cycle 1 … Neutros = 1.4 … Hb = 9.8 … (KFLC tbc)

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Those who’ve seen me around – probably walking a bit unsteadily, certainly wincing – will know my last couple of weeks have not been good. This is in part due to back pain and bone pain. I’m not certain what has caused it all to get worse: whether it is my myeloma progressing; or whether I’ve aggravated it; or whether it is my body becoming resistant to the painkillers; or whether it is the adjustment/accommodation into the start of treatment. Whatever the cause, it hasn’t been much fun. On top of this, I’m feeling even more out of breath than before.

(Plus, I have the ups and downs of steroids to contend with. But more on that another time.)

In summary, not great. I have been reminded – as if I needed it – quite how grim myeloma can be. Though it could, of course, all be a lot worse. And I’m optimistic that the worst of the bone pain is coming back under control. Hopefully the next few weeks will be less arduous than the last.

When I arrive to get my new prescription, the doctors take it all quite seriously. My anaemia is becoming a real concern, but there’s nothing to suggest the drugs are making it dramatically worse, so no reason not to continue the treatment. We won’t have any meaningful feedback on whether the drugs are working, for another month (they took a blood sample today, but it takes a week to get the result, and anyway, one result on its own won’t tell us much). So, we continue on the current course.

They suggest to substantially increase the doses of my painkillers. Hopefully I can return to some quality of life that is a little more bearable. Living “in” it, one sometimes lacks the perspective to see what’s going on. It is only when the docs ask me the clinical questions – what is the pain like, how has it changed over time – that I appreciate that living as I have done of late is not OK. It’s not just part of the process. It’s not my lot in life. It’s not just something I have to put up with. It’s not just something I have to keep quiet about. Actually, I have a right to expect better, to demand better. Better, in the immediate sense, meaning stronger drugs!

One cycle down, 3 or 5 to go.

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A little about the second drug in my treatment triad: thalidomide, of which I currently take 100mg each day. I’m intrigued to be taking thalidomide, because its name is so arresting, so shocking. There isn’t a medicine on the planet with a worse reputation. Originally marketed as an anti- morning sickness medication in the late 1950s, thalidomide did appalling damage to the unborn children of unsuspecting mothers-to-be, before being taken off the market again in 1961. Having failed patients so badly in the past, the medical profession is understandably making a significant effort to avoid any more unborn children being exposed to thalidomide. This basically means ensuring those of us taking it don’t procreate. I’m not aware of any evidence that thalidomide can affect a baby from its father, but no-one should even want to let that risk exist.

My supply comes in rather glamorous packaging – practically gift wrapped – and with extensive instructions and warnings. The hospital checks up on me too, by asking all sorts of very personal questions. If I were female, they would insist on regular pregnancy tests. I can be grateful of being spared that intrusive indignity. Frankly, it is all a little unnecessary: having managed to have only the children I wanted to, these last 30 years, I have no intention of letting my guard down now.

The thalidomide crisis/scandal served to demonstrate the necessity for proper clinical trials, and to show the need for proper processes to manage and monitor drugs. It is also a striking example of the pharmaceutical industry failing to live up to its responsibilities. It is an important story, but it is not my story.

The reason thalidomide proved so devastatingly dangerous was, ultimately, the reason it was considered as a possible cancer treatment. The deformities in unborn children were caused, we know now, by Thalidomide impeding blood vessel formation. But it wasn’t until the mid 90s that this property (called “antiangiogenesis”), was recognised and considered as a possible cancer treatment. Surprisingly, it turned out to be most effective in blood cancer – a cancer where one would intuitively imagine blood vessel formation is not a factor. (Do myeloma tumours have blood vessels?) The pharmacology is complex, and the effects of thalidomide are still not entirely explained. It does a number of things, but we don’t really know which of them gives it the anti-myeloma properties. As well as stopping new blood vessels from developing, it is known to inhibit the development of the cells in the body tasked with breaking down old bone (“antiosteoclastogenesis” – just rolls off the tongue!). One of the symptoms of myeloma – the biggest single problem, for me – is that it alters the balance between bone destroying and bone building cells, so that bone is destroyed more quickly than it is replaced. Thalidomide appears to act in the opposite way, but it is not clear whether this helps to explain why thalidomide kills myeloma cells. Maybe it is just a bi-product of interfering in the same processes.

Thalidomide and the other drugs that have more recently been developed in the same family (lenalidomide and pomalidomide, which are presumably working on the same pathways), are not completely understood. We know they work, but not exactly how. You’d be surprised how common that is in medicine. This group of drugs are classed as “immunomodulatory”, but given that they are used to treat myeloma, a disease of the immune system, the classification really doesn’t tell you much!

Thalidomide is often part of people’s very first (“front line”) treatment. When myeloma relapses, it is normal to move on to different drugs; the general premise being that the disease is likely to become resistant to drugs it has been exposed to before. As it happens, I didn’t take it last time round (because it wasn’t part of the trial protocol I participated in). If it weren’t taking it now (this time round it is part of my trial protocol), then I think it is quite likely I would have ended off missing it out altogether. That it could easily not have featured in my treatment at all, I find remarkable, considering that less than 20 years ago it was the very first available alternative to old school chemo. That shows how quickly the treatment options have changed and are changing. It is quite likely that I will take its siblings – particularly lenalidomide which seems to have the best combination of effectiveness and fewer side effects – at some point later in my journey.

The side effects of thalidomide are basically that it can suppress bone marrow function. So it can cause or exacerbate neutropenia (weakened immune system) and anaemia. Given that these are problems I already have, there’s a risk that things get worse before they get better. That’s how it feels right now, with me puffing at even the slightest exertion. Still, I haven’t been struck down with any infection (yet) and for that I must be grateful.

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(* PR shoes = Puerto Rican, i.e. “Fence Climbers“. Not, as those of us in the trade might incorrectly surmise, Public Relations shoes. Though in spivviness at least, if not in practical law evasion features, the difference isn’t necessarily great.)

Ixa

We are the boys who’ll drape you in jewels, cut off your hair and throw out your shoes, ‘cause baby, you won’t need them, where you’ll be
All the king’s men – Wild Beasts *
I figure some of you reading this do not want or need long essays from me. If you’re following simply to know I am ok,  I’m grateful – thanks for caring. For you, a short read…
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Cycle 1 is going ok. The lack of side effects, combined with the simplicity of taking pills, rather than intravenous drips, injections, picc line etc, is leading to something of a reverse placebo effect. The drugs had better work, because I find it hard to believe in them, having been conditioned to old school chemo. It’s a bit disconcerting to find myself taking what appears to be medicine.

That said, the steroids are not very nice – making a mess of my Thursdays and Fridays. But more about that another day. And I’ve been having quite a bit of trouble with pain and spasms in my lower back. My mobility is rubbish, and it hurts a lot. Very frustrating. Still, I’m optimistic the pain will be quelled after a couple of cycles, and if the next few months is like this, it’s not so bad.

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Still reading? How nice! Even so, I guess you don’t want or need a blow by blow of my days and weeks. Instead, I thought it might be of interest to give a bit of a summary of the drugs I’m on, seeing as I’m in a drug-taking phase of my myeloma. I’m going to start from the top, with the ixazomib. I take one 4mg pill of ixazomib each week, 3 weeks on 1 week off. And if I am selected in the clinical trial to receive “augmented” or “maintenance” treatment, it will be with ixazomib.

Ixazomib is a proteasome inhibitor, which means it disrupts the cell’s mechanism for breaking down unwanted proteins. Without functional proteasomes, a cell chokes on its own waste, and dies. All cells need proteasomes, but myeloma cells need them more, as they produce excess quantities of paraproteins. So proteasome inhibitors are particularly bad news for myeloma cells.

The first proteasome inhibitor developed was bortezomib. I took this last time. It was only developed from 2003 so it’s a very new branch of medicine. Before it came on the scene, myeloma had very short life expectancy, and the main drugs prescribed were unsophisticated, generic “chemo”. Proteasome inhibitors are the reason I’m still here.

Ixazomib is even newer – it was only registered as a potential treatment in 2011. When I was newly diagnosed (2012) I kept a list of innovative treatments when I heard about them – part of my armoury towards becoming an engaged patient. (I’ve stopped keeping this list because it got too long – I realised that merely knowing the names of possible medicines was not what would empower me.) At the time I wrote of ixazomib simply
“Ixazomib (MLN9708) (can be taken orally) FDA approval projected 2015.”
In fact, approval came a little later, in 2017 in Europe. NICE only consented for the NHS to pay for it as of November – 3 months ago! UK funding so far is for people who’ve had more treatment than me – I wouldn’t be eligible yet, so I’m only getting it as part of a clinical trial. The drug company is providing the drugs. Saving the NHS some money. And a good thing too, as the wholesale price is otherwise £2,000 per pill. (Indeed, that’s how I got my drugs last time round, too – thrifty me.)

Proteasome inhibitors don’t have the potential to be a cure, but they do have the potential to improve responses. The trial is, in part, to investigate whether proteasome inhibitors can improve the outcome of stem cell transplant. It’s part of the transition from chemo to medicine. It seems weird now to believe that in future myeloma treatment may actually make one feel better, rather than worse. Something I look forward to getting used to. Though that is not to discount the one very real and very horrid potential side effect of these drugs, which is peripheral neuropathy – the sometimes permanent loss of feeling in hands and feet. I’m lucky not to have suffered much of this. And ixazomib, taken orally, is less likely to cause neuropathy than bortezomib.

These drugs are miracles, really. I am so very grateful they existed by the time I developed myeloma. The story, otherwise, would probably have been shorter.

The exotic names are striking. There is a nomenclature such that you can tell something about a drug from the end of its name. A “…mib” is a proteasome inhibitor. Other classes of drugs have their own suffixes. For example, a “…mab” is a monoclonal antibody. The syllable before that tells you if it is human (u), humanised (zu) or chimeric (xi). (Chimeric meaning of mixed human and animal origin). The syllable before that, in some drugs, tells you if it acts directly on the tumour (li) or on the whole system (zum). So a “…zumumab” is a systemic, human origin monoclonal antibody. And a “…zomib” is a humanised proteasome inhibitor. So now you know!

So far there are three “…zomib”s in use. The two I’ve had act on the same part of the proteasome – they are functionally the same. Whereas the third – carfilzomib – works slightly differently, meaning it is another potential treatment for me, when I need it. There are several more ”…zomib”s currently in trial, including marizomib and oprozomib. Things to try, one day, if I’m lucky!

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* I’m off to a gig, tomorrow! Pragmatism dictates we’ll be in the seated area. Wild Beasts are a band I’ve loved for a long time, now sadly split. Tomorrow is the last time they’ll play. If this lyric is contorted into a dialm metaphor, then the drugs are the boys (and I am the girl from Hounslow. Hatch me! Hatch me!)…

A plan for 2018

You understand, I got a plan for us. I bet you didn’t know that I was dangerous
Dangerous – Big Data

Checkup … KFLC = 676 … κ/λ = 122 … Hb = 11.6 … Neutros = 1.16 …

Today, as I expected, I’m told that my next appointment is probably the start point of treatment. I’ve been told this before, but they seem to mean it this time. They’d have started today, but for the practicalities of Christmas: low staff levels for them, domestic priorities for me.

I’ve been experiencing a reasonable amount of rib pain and quite a few muscle spasms, these last two weeks. I’ve had to increase the frequency with which I take painkillers, and I’ve started taking amitriptyline again to defuse the spasms. The doctor seems pretty certain that these symptoms are evidence of progressive disease.

In terms of blood counts my κ/λ ratio is (again) above the threshold which separates smouldering myeloma (no treatment required), from symptomatic (or likely to be symptomatic in the very near future) disease. The change in the ratio is largely because my lambda levels are down – which could itself be a sign of mm crowding other cells out. Also of concern is my low calcium – for which I have been prescribed vitamin d; and low neutrophil level, which puts me at increasing risk of infection. The consultant says it will be easier to treat me – especially in the context of the trial – if I can avoid contracting pneumonia (or something else) at the same time.

So I expect to sign the consent forms on 5th January, and then there’ll be 4 weeks of tests, meaning I will start treatment proper at the beginning of Feb. This would mean SCT somewhere between June and September, depending on how things go. (And I’ll be up on my feet by next Christmas, yay!)

It doesn’t take long, living with rib pain, to remember exactly how bad myeloma symptoms can be. If the symptoms persist, I’ll be keen to just get on with it now.

Six Weeks

It’s been two months since I last published a blog and let me tell you this, it has been quite the two months. After having this wretched disease for over five years, I thought little would surprise me. Well, I expected the whole looming death part to have a different trajectory to the routine I am used to, but as I said, I expected that to be slightly different. I never considered what the steps will look like getting from the relapse stage , to the end of the line stage. I always assumed it’d be easy but increasingly, I feel I might have been far too optimistic.
Somehow, in five years, I had settled into an uneasy routine with My Myeloma. It’s quite simple really, I would have some sort of treatment, which would work for a bit, then it would fail, then the Medically Trained People would somehow magic up another treatment for me to start, and thus the cycle would start again. 
I had five years of this. Don’t get me wrong, some horrible things happened along the way; it shouldn’t make the list, but losing my hair is still up there in the shitty events. I didn’t really enjoy any of my transplants and I definitely did not enjoy the time I had to spend five days in St Bart’s because I caught Influenza B. On the plus side, I thoroughly appreciated any drug regime that could be taken at home. I had a few of those.
What am I saying, all of that is in the past? If the last two months have taught me anything, and I am still trying to decipher exactly what further lessons I needed to learn by the age of 33 about my cancer, is, that Myeloma is a load of fucking shit that if there were a hell, it should be confined to purgatory trapped under a full, infected bed pan, never to bother nice (even horrible) individuals again. Oh yes, just to keep you up to date, I have also learnt about bed pans recently. And sick bowls. And those cardboard things that collect one’s waste by resting on the loo seat. I know it all.
On 7th September, I returned to UCLH for a clinic appointment. Prior to that I had found out that the trial at St Bart’s was no longer working and I had been experiencing what can only be described as extreme and unbearable pain that I had blamed on doing too much on holiday. The pain itself was predominantly in and around my right rib cage. 
As I had self diagnosed every relapse since 2012, I had spent about a month begging for some imaging. St Bart’s took no action, I would question if the staff knew my name, but thankfully UCLH did know my name and once they had the necessary images, man, did they take action.
I was admitted to UCLH immediately on the 7th September following an appointment, during which my family and I were told we were coming to the end of the line of treatment. Not only that, but there was also something wrong with my neck. I say ‘something’ because I think it took me well over a week to get my head round what a compression on one of the C vertebrae meant. I don’t recommend it. I don’t recommend developing a mass that pushes through your rib cage either, Alien (or at least that’s how I like to picture it) style. It cannot be sugarcoated. I entered that hospital with Mamma Jones and Big Sister in a bad way. 

And that bad way only worsened over the next six, that’s right, SIX weeks…

I don’t even know where to start. If you are independent, like to toilet alone and enjoy walking around, I’d say what followed would be your worst nightmare. It was mine. 

You may have deduced that not all was or is well with my spine. Due to the compression and the location of it, I arrived at my bed to be told that I was no longer permitted to walk. As in, no walking at all. Not only was I not allowed to walk but if I wanted or needed to be moved in my bed, I would have to be rolled by four Medically Trained People. My head and neck, could not be elevated anymore than 30 degrees. Three weeks later, this changed to 40 degrees and the news that I could roll myself, but by this point, the damage to my ego had already been done. Not to mention the damage to my legs for not walking for three weeks.
Despite being in denial about it, shitting is a necessity that eventually cannot be avoided. The day I could not avoid it was Day 11 in hospital when there were only male nurses available. I’m a 21st Century Woman, so I went ahead and let the team of four roll me onto a bed pan. I did not say anything when they had to roll me again to clean my bum. Nor did I say anything the next day, during one of my five daily bedsore checks, when a different Medically Trained person discovered a lump of faeces stuck in my bottom from the previous day. 

That was a low point.
Washing myself alone, was and remains impossible and for the duration of my stay, washes were restricted to hand towel baths in my hospital bed. If I was lucky, the Medically Trained Person cleaning my nether regions might have even shut the window to my room for some privacy. Due to staff shortages, during the last week of my stay, no washes were offered and I went a week without being cleaned. Needless to say, washing hair is extremely difficult and something that has happened twice between the 7 September and now.
Thankfully, due to what I like to call ‘performance issues’ I was given a catheter for the first three-four weeks of my stay. After that, I relied on my good old pelvic floor muscles to stop me from soiling myself. How can that be when you cannot walk, I hear you ponder? The answer is long, boring, excrutiatingly painful and another blog post. In the interim however, you just need to know that I have a full back brace, handcrafted to fit my body and imagined perter boobs, which I am allowed to wear to mobilise. 
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This really is a story of never ending gibberish. Maybe grab a cup of tea. Have a wee break. I’d have one with you but my mouth is currently tainted by the delectable taste of 60 mg of steroids per week, so I am only able to stomach the taste of fruit juice. 

Where was I? Right, my health. In addition to the bony stuff, the really smart Medically Trained People had to find out what was wrong with me and if there was anything that could be done about it. This period felt like it would never end, with the feedback I was getting changing nearly everyday. I’m not going to regurgitate all of it, just trust me when I say it was very confusing and everyday resulted in me hysterically crying and Big Sister getting angry. 
I lost count of how many CTs, MRIs, ultrasounds and x-rays I had, but I know it was a lot. It was not uncommon to be collected by the porters, without any clue where I was going or why. I knew where they were taking me on week one, when I had five fractions of radiotherapy to heal my ribs, but as for the rest, it was not like I was in the strongest position to argue or question. I simply did.
Things went downhill relatively quickly. By Day 4 I had tested positive for Paraflu, which gave me a chest infection and resulted in me being relocated to an isolated room on a ward where the staff are nice, but significantly understaffed. One night, I rang my bell for 2.5 hours before I saw a nurse. On the plus side, it meant that I had my own room with a nice view over London. A bonus when you consider the fact that the woman opposite me on the shared ward addressed me as ‘Emily’ and wished me well. 
The hardest part of having the lurgy was that I did not see somebody without a mask on for five weeks. Talk about dehumanised. 
The chest infection persisted, so for extra buoyancy, I also developed sickness and diarrhoea and a temperature. It was lush. 

Notice how I am yet to mention My Myeloma? There’s a reason. My Myeloma failed to behave in the manner of which I have become accustomed. For the first time since I was diagnosed with the wretched beast, I was afraid of it. It wasn’t behaving how I have known it to behave. My paraprotein was the highest it had ever been, and no matter what drugs were tried or the volume of fluid pumped into me, my calcium would not shift below 3.0.

And still I carried on. It may be the biggest test of my willpower and personal strength (because I really have no meaningful life until I am rid of the brace), but I unequivocally told the Medically Trained People that I am not ready to give up with my life yet. As long as the treatment maintains a reasonable balance between quality of life and those dastardly side effects, count me in. Sign me up.

I’m not ready to die yet.

Unfortunately, we soon ended up spending some time thinking about my death. I completed my will and paid for my funeral. Once I was fortunate enough to be on a reasonable treatment regimen, I suffered from what I now believe to be called an Acute Kidney Injury. At the time, it was badged as something far graver than that. I cried for what felt like days. I got so angry with My Myeloma, I told it I hated it. I begged for a reprieve, identifying many people other than myself who deserved the award for ‘Most Deserved Recipient Of The Most Stubborn Myeloma in This Fair Land.’ I really am not saying that other people deserve this illness; I was just surprised to learn that I had not come to terms with the fact I have it. Death seemed so much closer than before I walked into clinic on the 7th September. I don’t know when it will come and that’s the scariest part. How long is my piece of string?
My need for tears grew when I was taken off my morphine, which I had taken in slow release form everyday for five years. There were nightmares and ticks, to accompany my sickness and diarrhoea. I won’t lie; it was a tough, sleepless few days.
Do not fear, I will not prolong this anymore than I need to. They require near constant testing, but for the moment, my kidneys are behaving. It took a week or so for them to turn around. For how long they’ll stay in this state, only time will tell…

Six weeks after I entered UCLH, on 19 October, after a lot of pushing from my family, I was discharged. Gone were the at least daily bloods, out with the cannula resulting in the constant beeping of unanswered alarms. Goodbye to the four hourly observations, even at 3am. Welcome to sudden and ill prepared loneliness with an absent of nurses. So long institutionalised regime. Hello privacy. After six weeks, I am to fend for myself once more. 
Just between us friends; It’s fucking terrifying.

The view from my hospital window

EJB x
P.S. New treatment regime (Velcade twice weekly for three weeks;20mg Dexamethasone the day before, of and after Velcade; Veneoclax eight pills daily

It’s Supposed To Be A Marathon Not A Sprint

The month of August is the one month where I am guarenteed to feel nostalgic about my life pre and post My Myeloma. I might have such thoughts at other times of the year, but these usually occur when I am in some sort of drug and/of fear induced melancholy. August however, is different and this August has been more so.

August marks the anniversary of my diagnosis, my Cancerversary if you will. This year it was my five years Cancerversary. Not only do I get warm and bleak feelings about my once able body in the run up to my diagnosis. I am reminded of the stats. I am reminded of the stats I was told on the 21 August that I was then quickly told to forget about. ‘Survival rate is about 10 years, but this may be different for you because of your age’. I have had other stats thrown at me in the five years since, usually at the start of each treatment and with each treatment, My Body has come up wanting. 

There are several important dates in August; admittance to UCLH on the 14th,preliminary diagnosis on the 17th, formal diagnosis on 21st, kyphoplasty on the 24th and treatment commencing on 28th; each are packed full of memories.  This summer, I have found the memories on these dates amplified. Maybe it is something about five years and the fact that anniversaries are usually celebrated in fives. Maybe it is because I have felt my current treatment fail leading to the constant whirl of long forgotten stats and the big question that is , will I make it to the next big anniversary? Try as I might, I cannot forget about this. I even struggle to schedule a brain appointment for it, so I can lock it away again until the next scheduled appointment; my usual coping mechanism.

Every year since the cement was inserted into my L4, I have had to complete a survey about my health. What is that but a ticking clock counting down to… something? This year, the Medically Trained Person at the end of the phone said to me ‘don’t worry, next year is the last year we have to do this’. I responded, quite seriously with ‘good, that gives me something to aim towards. I hope I get to speak to you next year’. 

Some people may call these thoughts unhelpful and morbid, but I call them realistic. To me, not talking about my death, doesn’t make the chance of it less so. Avoiding such talk just makes me feel more isolated than my body is currently making me. I’m do not feel in anyway ready to kick that bucket, but I am realistic to the fact that in the five years I have had myeloma, I have had three failed transplants, multiple failed treatments and two, yes TWO failed trials. Yesterday, I was informed what my aching back had been telling me for weeks, that the Daratumamab trial had failed. I was taken off it immediately, and today I shall return to my home from home of UCLH, with the hope that they can pull something else out of the hat.

I think the fact that it was August has made me hypersensitive to any changes in my body, because those changes mirrored to some extent what I felt all the way back in the Summer of 2012. August 2017 is not the first time I have been made bedbound with a sore back. The difference now is that I know what is causing my sore back now, but I do not know the extent of the whys it if the damage is permanent. Nor is it the first time I have had high calcium, as I was told I had a fortnight ago. I was admitted to hospital in 2012 with high calcium. I have a constant sense of  déjà vu, mostly concentrated in my belly of worry. The difference? I no longer have the naivety and hope I had at the end of August 2012 that carried me along for years. 

Today, I feel like my chances of survival are dwindling. 
Three weeks ago, I turned on my television to find what the BBC were billing as a second Super Saturday. I had tuned into the athletics and believe it or not, a sporting even where people are at the peak of their physical fitness reminds me that I am not. As strange as it sounds, I feel like my diagnosis and thus My Myeloma by default is intertwined with the recent history of the sport. 

During the first fortnight of August 2012, I, like most of the country was glued to the London 2012 Olympics. I was sick at this point, but I did not know why. I recall Mamma Jones telling me on Day 1 of the Olympics that I looked grey and weak. I didn’t believe her, all I knew then was that I had a never experienced pain in my back before and that my GP could not diagnose it. Whilst I was waiting for an answer, I was prescribed a pain medication that made me slur, which led to me being signed off work. Well, removed against my will  from the office. So, I got to spend a fortnight, unable to move from my sofa (it wasn’t a sofa then but a really uncomfortable futon not suitable for grown ups), watching the fittest of the fittest take each other on in a myriad of activities. My memories of this time are fond ones. The irony that I was so enthralled by a sporting event pitched as the ultimate sporting event, whilst I was physically deteriorating day by day, does not escape me. The sane feelings emerged during the Paralympics, only with these games, I had the added jealousy of hearing how these athletes had managed to overcome adversity to be there. 

By the time the next Olympics and Paralympics rolled round last year, I knew that I was once again hooked. Watching as many events as possible was akin to torture but a torture I had welcomed. The athletes wept and I wept. I wept because I felt their pain. I wept because I knew that I was long past the point of ever being able to run anywhere let alone complete  a marathon. I wept because I knew I could not jump over a hurdle and I wept because I would never being able to learn to ride a bicycle around the corner let alone a Velodrome. When the games ended, I wept because I feared that I would not be alive for the next games in 2020. A feeling based on my then trajectory and not depression.

And so, with this year’s World Athletic Chanpionships being held in London, I was engulfed with myeloma based emotions once again. They have statistics too. For all the trying and all the rules I imposed on myself, this month had me thinking about my stats.

 I cannot help to being a different person now to the person I was when I was diagnosed in 2012. 

As scary as all the stats were back then, like I said earlier, I was naive to what they meant or could mean. I thought and hoped that I was told to pay no attention because I was going to be the medical marvel who could withstand every drug thrown at me and survive. I thought remission was a distinct years plus possibility. I believed I had many days ahead of living in me.  Now, in 2017, I think the stats have been long thrown out of the window and the best I can hope for is to exist day by day and try to fit some living, when my body allows, in there too.

There are moments in time when I feel tremendous guilt in how, after just five years, I could end up here. Should I not be pre-paying for my funeral? Is getting a will a sign of giving up rather than an act of mere financial sense. I know my nearest and dearest loathe me talking about the possibility of my death, and now I fear that  these once in a blue mood chats, honest chats, have tipped my hand. I hope not, and if push came to shove, I believe not, and yet I still have moments when I feel guiltily that I may have jinxed myself. Perhaps this is how a favourite athlete feels when the bomb out in the semi finals… 

I know in regard to my treatment that I  done everything I was supposed to do. More open to discussion is how I have mentally got through the last five years, but with regularly counselling sessions and honesty, I personally believe that I have done everything in my power to not be in the medical position I am in today. I renewed my latest cinema memberships by direct debit, not for the financial benefits but because I wanted to commit to being a member next year. For all years. Last week, I spent far too much money on bedding and other soft furnishings, and I spent that amount of money because I want to believe that I will need said bedding for a long time to come. A fortnight before that, I invested in a limited edition backpack, not just because I liked it, but because I needed something of good quality for all my future visits to the hospital. I have more examples, but essentially, I do things to show I am not ready to die. 

My treatment has failed. Again. As of March, I had exhausted traditional myeloma treatments. That’s a lot to take in and let’s face it, these are odds never in my favour. That was a failed attempt to  shoehorn a film quote into my blog, the odds are not in my favour. 

I was supposed to have at least ten years; the marathon. Five years might not exactly be the 100 metre sprint, but it’s no marathon. I want the marathon.

Let’s see what is offered to me today. Who knows, I might be reinstated.

EJB x

The Know It All

When it came to getting my radiotherapy, I was very much in the been there, done that, got the t-shirt, camp. If there is such a camp when it comes to radiotherapy. I bet there are radiotherapy clubs, but this is just me thinking out loud. I do not want to join a radiotherapy club. Prior to my sessions last week, I had had radiotherapy twice before. Whilst my previous experiences were not without their side effects, if you had spoken to me the week before last, you would have heard me say with great confidence “of all the cancer treatments I have had, radiotherapy is by far the easiest one.” One of my dear friends offered to put her child into nursery to accompany me on my first session, another dear friend offered to take a day off work; both offers were immediately rejected as wholly unnecessary and seen as (a much appreciated) overreaction. 

I thought radiotherapy was easy. At least the way in which I have experienced radiotherapy was easy; in the form of a short five day course or as a one off session. I am not naive or conceited enough to think that the people who require weeks of back to back, daily radiotherapy would classify their experience as ‘easy’. I described myself as a seasoned pro, not to a Medically Trained Person, but in my head and probably on this blog. To the Medically Trained People, I somewhat arrogantly sped through the list of side effects and I had very few questions prior to my consent. I just wanted to get on with.

In terms of usage of time (if you exclude the travel), I suppose radiotherapy is easy, and it is more for this reason that I declined the kind offers made by my friends to accompany me to the hospital. I attended UCLH for five days and only one of my visits lasted for more than an hour. On average, I would estimate my trips lasting no more than 30 minutes. The zaps themselves are even shorter, taking a matter of minutes, or even seconds, it’s hard to tell. It’s not like Goldfinger, you cannot see a green laser coming for you. After my first session on Friday 7th, I asked whether that was it when the technicians reappeared, because I was completely unaware of the procedure taking place. I thought that the machine buzzing and moving around me, was preliminary work before the real deal could take place. That expectation is coming from somebody with prior radiotherapy experience; my memory truly is awful. The majority of time my time in the radioactive bunker was spent taking my clothes off and putting them back on again. 

I do not recall experiencing any side effects after my first encounter with radiotherapy. That was just one zap on my right hip and the only thing left to remind me that I had it, after the pain went away were the three tattoos left behind. My second experience of radiotherapy was not as straightforward as the first, but it did not compare to a week’s dose of steroids. Approximately two weeks after the five sessions on my L1-L5, I endured two days of food poisoning like symptoms due to the zaps going straight through my stomach. This side effect, whilst absolutely horrible at the time, was predicted and after a day or two recovering, was quickly forgotten. 

Less easy to forget, but without the severe sweating, was the scar that treatment has left on my back. Initially, I say initially but approximately six weeks after the treatment, the skin on my back appeared to have been burnt. Burning or sores is a well documented side effect of radiotherapy, so I was unalarmed but itchy, I treated it with aqueous cream as instructed and thought nothing more of it. Approximately 15 months later, I developed Graft vs Host Disease as a result of my transplant and I was reminded of my radiotherapy once more. 

I could go on and on about my back, but all you need to know is that as a result of the GVHD, I still have significant scarring on my back. The scarring is in fact so unslightly that it was commented on several times during my most recent week of radiotherapy. One Medically Trained Person with dulcet tones reminded me to moisturise, to which I politely told her that moisturising would not cure this particular ill. I actually wanted to laugh in her face at the stupidity of her comment, given how many doctors I have discussed this ailment with and how all of them have been left scratching their heads. I did not laugh in her face though, because her comment was only stupid to me (and maybe Mamma Jones) who has lived through the saga, or what feels like a strange X-Files-like marking that is my back lower. 


Exhibit A – I know it is gross

Despite my back and the hideousness of it, going in to my most recent treatment, I still thought it was going to be easy and the side effects minimal. Perhaps it is because I did not have the time to think about it. In fact, when it came to asking questions, I asked only two. The first question, given the fact I just wrote two paragraphs about it and shared a rather nasty picture of it, was about scarring. Of the three areas being treated, the one requiring five sessions was on my upper spine and call me vain, because I can be, but I do not want to have a similar scar that would be visible. One scar like the one I have is enough. It’s a story and an occasional show piece. Two scars, with one of them on a visible area of my neck is just unnessary. Only time will tell if history repeats itself. Unfortunately, I cannot apply the cream provided by myself, so I am reliant on the kindness of others to rub cream into my naked body.

My second question was about diarrhoea and whether I would get it again. Nobody wants to get diarrhoea, especially the sort where your stomach cramps constantly and  sweat falls from your forehead to the floor. Flashback warning! I just recalled having to remove all my clothes whilst on the toilet the last time I had radiotherapy induced toilet issues. I cried too. Horrid. So yes, I don’t want that. Unfortunately for me, I had one off zaps to my T10-L1 and my left ileum; both of which could have gone through my stomach. So far, I had three days of cramping that was easily treated by a few doses of Buscopan (never underestimate the power of Buscopan, I’m an advocate and I believe it should form part of any personal drug stash). 

I am yet to mention fatigue. I knew that the treatment was going to make me tired, especially as the doses accumulated. It made me tired last time and I expected no less this time around. I suffer from fatigue daily, so I thought that it was barely worth a mention. Fatigue impacts so much of my life already, it’s as common to me as water. Nevertheless, I prepared for more fatigue than usual. I purchased ready meals and purchased food that Housemate could cook for me. I bought some plants for my bedroom and replaced my broken aromatherapy defuser, to ensure that my room was a serene and calm environment. So convinced was I that I was going to manage it with relative ease… 

You’ve guessed it. I’m eating my words. I’m chewing down on them, masticating slowly before I humiliatingly swallow them and choke. 

I do not know if it was because I had more radiotherapy than I had had previously; or because I am physically weaker than I was when I had the previous my treatments, but I found last week incredibly difficult. I struggled. Put it another way, it was anything but easy. 

Pain. I was in a lot of pain. Hell, that was the reason I was having the radiotherapy in the first place. Unfortunately, the start of the radiotherapy coincided with a deterioration of my pain. A vast deterioration. I had taken to wearing my sling all the time (bar bedtime) to take the pressure off my back, which did alleviate some of my symptoms but there was a time limit to it. Don’t get me wrong, I felt pain whilst wearing the sling too, I was just in less pain. If I was not wearing a sling, I could not stand up straight. The pins and needles in my arm would be constant and my elbow felt like something was taking a hammer to it. I know I am doing a terribly job at describing my pain. It was in my back, my left arm, my legs, I felt it everywhere. It was all consuming.

As the week of the 10th April started, I had  forgotten one crucial thing, and that was that radiotherapy can cause more pain before it relieves it. By the Tuesday, after I had had two sessions on my upper back and the two one off sessions, I remembered. The radiotherapy seemed to enhance every pain I had. The pain in my ileum became instantly worse. It felt heavy and the pain pounded like a heartbeat. My back, well, my back felt like everything was wrong. I couldn’t lift my head or turn it. I had the occasional spasm. I even struggled to get in through my back door because I couldn’t lift my leg high enough. Essentially, I moved like the pre oiled, rusty Tin Man. Sleeping on my side was impossible. Sleeping full stop was difficult. 

My words do not do what I felt last week any justice at all. Know that I frequently yelped in my pain, occasionally I produced uncontrollable grunts. The pain, as does my pain today, got progressively worse as the day went on. Doing something as simple as getting ready for bed had to be broken down, because the act of taking off my clothes, putting my pyjamas on, pulling down my bed sheets and setting up my five pillow sleeping tower seemed impossible feat. 

Despite fighting to be independent and at times, doggedly so, I relied on Housemate heavily. As I could not bend down, he had to get my food out of the oven, fill up my water bottle, add ice to my drinks, put my post radiotherapy cream on my neck and do up my bra. On the Thursday, Mamma Jones had to drive to London after a full day’ work, and drove me back to her house because I could not lift my suitcase nor get myself to the train station. And because I felt so rundown that I needed the Mum Love and I also though that Housemate needed a break.
The above is not solely the fault of the radiotherapy but it definitely played a part. I do not think that this was a ‘woe is me situation’. I really hope I do not come across that way. I was genuinely scared by how limited my movement became; that should be enough to convey how difficult things became.

In addition to my overly documented pain, there was the fatigue. The fatigue was easier to manage. If there is one thing I am used to managing, it is my fatigue. That said, I did manage to fall asleep in the waiting room of the Radiotherapy Departmemt. I walked in, sat down and within 10 minutes I was fast asleep. I know it was 10 minutes because I arrived at 14.30 and the Technican called my name at 14.40. 

I completely underestimated the toll the treatment would take on my body. It’s radiation. I should have put two and two together. In my head, this was just the equivalent to taking a paracetamol. On the Monday of treatment week, in addition to the daily zap on my C5-T5, I had the one off zaps on my ileum and my T10-L1. Oh my gosh, such was the power, I felt instantly felt sick. It was a miracle I did not vomit in the taxi on the way home. By the time I arrived at my flat, all I could manage was to roll onto my bed after finding an Ondansetron (to manage my sickness) in my drugs sack and there I stayed for 90 minutes in the foetal position. I could not move. Everything felt weak and stiff. I believe my attempts to talk actually manifested in a mumble. When I eventually came round, I discovered that I had dribbled on my pillow and chin. There are reasons why I am single. That evening caught me completely off guard. Once again, I found myself panicking, worrying about the cause of the illness, despite realistically knowing that the cause was the radiotherapy.

Finally, in addition to feeling tired, sick and excruciating pain, the radiotherapy made me sweat. Instantly, after each session, I would have a hot flush. By now, I am used to hot flushes but the post radiotherapy ones were severe. One day, on the first day, I sat in the hospital’s main reception for longer than necessary because I was trying to work out how I was going to wipe my sweat off the plastic seat without anybody noticing. You’d think I would have well rehearsed this move by now, but apparently not. I think the radiotherapy had sent me a little doolally. Or perhaps it is my medication. My reactions and my ability to think feels much slower, less reactive.

A week on from my radiotherapy ended and all I can do is wait. I have no idea if I am going to get an upset stomach in a week’s time, or if I am going to get burn marks on my neck or hip. Not only am I waiting for the bad things to occur, I’m also hoping for the treatment to work. At the moment, I can feel my pain improving slowly. Slowly over the last five days, I  have gradually felt the sensation in four out of five fingers on my left hand return! That deserves the exclamation mark. Truthfully, I do not know if the improvement in my pain level is due to the radiotherapy or last week’s increased medication. I just spoke to a Medically Trained Person and she suspects it is the medication. So, wait some more, I shall. 

So much waiting.

Perhaps me saying that radiotherapy was easy, was wishful thinking. If you say it, it will come true. I know that is complete bollocks, but some sort of positive thinking is a good thing. Right now, as I end yet another epic blog and take in that I had a week of radiotherapy and treated it like it was just a regular day, I realise that I am exhausted. Absolutely exhausted.

That much at least, I know.

EJB x

The Fear – Part II

You have stopped responding fast enough to traditional Myeloma treatments’.

Fuck. 

Few things warrant the use of such foul language, especially in the written form, but a ‘fuck’ or a ‘bugger’ is definitely suitable in the situation I found myself in last Thursday afternoon. I didn’t say it out loud; I was still able to maintain some level of decorum.

I think I know what that statement means. It’s not the worse news I could have received, but it is not far from it. It wasn’t what I was expecting. It is a polite way of saying that my treatment isn’t working. Not working. Stupidlyhow could I have thought my treatment was working when I was in so much pain? In fact, after my first full cycle on the recently licensed drug I was on, I told a Medically Trained Person that I did not think it was working. I wish, with every weakened bone in my body that I was wrong. I wasn’t. 

 Am I dying? 

I don’t think I thought all of this or processed it when I was in the Medically Trained Person’s office.  I was in shock and I was trying to hold myself together. I didn’t hold myself together. I couldn’t speak, not initially anyway.  The first words I uttered, did not sound like fully formed words. It was an explosion of emotion. I tried to say that I wanted my hip fixed but that became a sob about how overwhelmed I was with the news. That’s right people, in this circumstance, I simply chose to yelp ‘I am so overwhelmed!’. Then I sobbed. It was not a cry, it was a snot-producing, face-pulling sob that was softened when I saw the tears in the eyes of the Medically Trained Person.  

I haven’t had long enough.

Thank goodness for my Big Sister. I had no doubt that she would step up in this kind of  situation and step up she did. I think I had become deaf to what was happening around me. To me, everything that happened in that room was a blur, but she wrapped me up in metaphorical love and got on with what needed to be discussed. It could not have been easy for her. It is one thing to be afraid of something, but facing that fear head, whilst holding somebody else up, on is on another plain entirely. I know that it was not just my fear either. What is happening to me, what was said in that room, is a fear held by everyone I know (and happens to like me). I will readily admit that I lost control. For the rest of that afternoon I repeatedly tried to compose myself, but failed miserably. I didn’t know that tears could flow so uncontrollably. Nor did I know that I was capable of talking such complete and utter drivel. But, for the rest of that afternoon and evening, I had my sister sitting next to me, looking after me and discovering the many benefits of a banana milkshake.

Am I a failure?

Anyway, let’s move on from this emotional mumbo jumbo; we have some real business to get to. In a nutshell, despite three stem cell transplants and many, many rounds of treatment by disease is currently active and my paraprotein is on a rampage. It is so active that I have to have radiotherapy on the distruction it has created in my body. Whilst the drugs I have been taking including the one I changed to in January are doing something, the cruel circumstance is that they have not been doing enough. This leaves the question I asked just a few months ago, what else is there?

Is this the end of the line? It now seems an almost rhetorical question. 

I do not wish to bore you with the history of Myeloma treatments, largely because I’ll reveal how little I have chosen to know about it. I’ve been deceiving, most of you will know far more than I do on the subject. For where we are in my story, all you need to know is that new myeloma drugs tend to be derivatives of older drugs. They are related.  This means, in a shake-your-head, we’re-out-of-ideas sort of way, the Medically Trained People do not think that such medications will work on me for much longer. It’s hard to process that, I almost have to sound it out in slow motion. And then repeat it. And repeat it again.

There are too many things to say about all of this and I don’t have the distance or the benefit of an adequate pain and drug feee sleep to eloquently describe how I feel. I know I am angry. Since I was diagnosed, I did everything I was asked to do. Almost anyway, I haven’t lived in a complete sin free bubble, but I have lived and I have done what I have been told to do. I took my various treatments, I coped with the disappointment after disappointment and still, I get out of bed almost every day and take the pills I have been prescribed. Yet it has still gone wrong. I used to joke that given my age and the flocks of people trying to help me, that I was a medical marvel. I willed myself to be, terrified that I wasn’t. It now transpires that the only thing marvellous about my treatment history is in how powerful my Myeloma has been. Perhaps I should have gone gluten free as one nosy Parker once offered as superior soundbite.

I do not believe in any kind of divinity. I have nobody to prey to and nobody to blame. A stranger once told me that my lack of faith was the reason I had cancer, but let’s face it, there are a lot of knobs in this world.  When I add it all together, I just think something bloody awful has happened to me and no matter how much I have fought it and continue to fight it, it’s stronger than I am. Long gone is my bereavement for my lost children, old age and picket fence. My fears now seem so much more urgent.

I don’t know why this happened to me, but for the last week, I have felt ashamed. I know that I did not bring this on to myself, even if I do love white bread too much. I do not believe that somebody’s willed for this to happen to me. And yet, I feel like I should have told my body to do more. Fight harder. Forget about being polite and smiling at everyone, I should have been a total bitch, constantly in attack mode like the scary army captain I met once in the cancer centre who made me cry when she announced it was her sheer willpower that caused her continued remission. I have willpower. I have multiple reasons to live, and yet I currently live in a world where I cannot do up my shoes.  

I should have reacted better to my medication and treatment plans. All those odds, all those odds and I was always on the wrong side. I’m angry that all of this is making me think about what this world will look like without me in it. I didn’t realise I have so much to lose. I watched my mum run around after me at the weekend, making me food and making sure my neck was adequately supported by my pillows, I listened as my nieces nervously tried to make me laugh as I tried to rewind my tears, as their Mum tried to keep us strong, and with every vibration, I could feel my friends trying to cheer me up or express their anger. I feel like I have let all of them  down. 

I made so many half promises about my treatment. This one will work. We will go on that trip. I can make it to that pub. Seeing the waves of broken promises scatter around me is my new definition of fear.

But what the hell is all of this? I cannot stop yet. I must not stop yet.

The Medically Trained People aren’t quite ready to stop and nor should I be. Last Thursday, when Big Sister’s concentration powers really kicked in, I was told of a clinical drug trial at St Bart’s involving antibodies. I could give you the medical blurb, but I think I should save that for a rainy day. All you need to know is that it is completely separate to all other treatments I have had. It might work, it might not, but the space on the trial could be mine. It took a few days, but I can now firmly say that I take back everything negative I have said against that hospital. 

A lifeline. 

It may sound foolish, given my very limited options, but the thought of leaving the comfort of UCLH once more added to my devastation. That hospital, in both my successes and failures have held me up. I have not other point to make on this subject, but it’s important. Ever the pragmatist however,  as I said last week, I think I said it anyway, if it is not clear to you yet my memory is a haze; ‘it is what it is’. I have to get on with it. 

On top of all that has come before this,  we had to discuss my need for radiotherapy. The practicalities. You can imagine how long this one clinic appointment felt. So much to take it in, so much to fathom. Ahead of last week, when I was suffering from worry filled sleepless nights, I thought the good and bad news hinged on the what was found in my MRI.  Clearly they did not, and now it seems easy to forget that I need some fairly urgent treatment. I have something in my neck that shouldn’t be there for crying out loud. And yet, the radiotherapy feels like it has become secondary to the ‘big news’ despite how quickly I have once again found myself increasingly immobile. 

I do not know if it is in the form of lesions or tumours or the generic term of bone disease, but I require treatment in my neck and my hip. The area in my neck has caused the majority of my recent problems in my upper back and my arms. Again, this may sound minor, but wondering why and how I have lost the sensation in half my hand for the last month, is a blood-curling. To even consider how the knee bone really is connected to the leg bone is mind blowing. If anybody has seen me move in the last month, you would have witnessed how much this pain has made me squirm. The pain and this is something that has not happened in a long time has been at a cry inducing level. I have cried not because I feel sorry for myself, I mean I have done that too, but because the physical discomfort has been so great.

It’s a juggling act though. As I am now due to start a new treatment at a different hospital, my doctor was reluctant to also zap (a term I have used a lot over the last week when discussing my radiotherapy, mostly because I can use an emoji) my pelvis. It may lower my blood counts and it will make me feel groggy, but even in the whatever state I was in last Thursday, I knew I needed my hip fixing. To get through my next, I have to be as fit as I can be.

I think it goes without saying, but the last week has been a whirlwind. It doesn’t feel like a week. In whatever timeframe I am now working in, and I guess it is a new timeframe now, I feel like my world has been turned upside down. I have so many things coming from so many directions, that I laugh at the meagre everyday complaints I have been able to read on social media. I used to think I was a great multi-tasker, but when it comes to affairs of my life, and the time that is left in that life; I do not have the foggiest.

I have to give myself a few passes. Firstly, I have been put on a ‘pulse’ of steroids, that is controlling my pain and will hopefully hold the myeloma whilst the Medically Trained People are doing their juggling. It is a ten day course of as much steroids. That’s right, ten days, decreasing by half every other day. It’s a well known fact that I cannot take a lot of steroids, but to put it into perspective, the first day’s dose was more steroids than I usually take during a full cycle on my old treatment and each weekly dose of that put me in bed two or three days. I am awaiting the inevitable crash increasing alarm and dread.

Secondly, I am currently on a lot of pain medication including sedatives. I basically rattle. 

Thirdly, I am once again struggling to look after myself more than I usually struggle to look after myself. I cannot bare weight in my left arm, my right arm is starting to go the same way and every activity, whether it is washing, eating or cooking seems impossible. In this mindset and the physical prison, I have to arrange my forthcoming radiotherapy sessions and attend the necessary testing for the clinical trial. And don’t think for one second, I have done any of that without my lipstick on. On Monday, which again is a story for another day, Mamma Jones and I spent 12 hours in London waiting, meeting new people and satisfying my steroid induced hunger. Today, I have seen a doctor, looked at some scan results, been measured and had two radiotherapy tattoos. 

Lastly, I just ask you to add everything up, consider everything I have said in this here blog and attempt to fathom where on earth I can begin. I have to begin somewhere after all. Welcome, to another volume in my possibly soon to be ended story of my life. 

To clear my head, Mamma Jones took me on an epic adventure to a National Trust property last Friday. I thought you might appreciate the evidence that I am still here. Getting out of bed.

So, there it is my current story. It’s not cohesive, it’s all over the place because I am all over the place. It’s new. It’s daunting. And my goodness, it is fucking scary. 

EJB x

P.S. Kudos, and I mean bucket loads of the stuff must go to my Medically Trained People and the NHS in general. In just seven days, they have seen me transferred to St Bart’s for (hopefully) the start of a clinical trial. UCLH somehow got my name into the mix of said clinical trial and St Bart’s seem to be moving whatever needs to be moved to accommodate me (no jinx yet though). They have also liasied with the radiotherapy department, resulting in an appointment today which included all my pre treatment measurements, ensuring that all areas requiring treatment are attended to. The treatment for which is starting tomorrow and will conclude next Thursday.  I have no more words in me to describe my gratitude.

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

Groundhog Day

Even though I have had cancer for, like, forever, I am still required to have the occasional bone marrow biopsy. Even though I have had cancer for, like, forever, the thought of a bone marrow biopsy fills me with dread and impending doom. If in fact, one can grammatically be full of impending doom. This morning, I woke up full of impending doom because I knew that at 09:00hrs, I would be forced into lying in a fetal position to allow for a bone marrow biopsy. I had been through an almost identical day before, for today was the Pre Transplant Tests Day. 

First things first, getting up early enough to be in the hospital before 09:00hrs, was not a pleasant experience.  I actually saw commuters, the nine to fivers. What a way to make a living. Before I had reached the hospital therefore, my day had started badly for I should have been woken up by Housemate and his dog and not by my alarm clock. Alarm clocks are for healthy people and not those who take a Diazapam before bedtime. I also knew that I faced a day of a biopsy, a kidney test known as a GFR Measurement, a Cardiac Scan and lots and lots of needles.  

The biopsy was just like the others before it, summed up with one simply word ‘painful’. This one however, had added blood and I ended up bleeding all over what looked like a puppy training pad, the waistband of my jeans and a little bit of the bed. I took a photograph of the latter to prove that I am not exaggerating.



Over time, I have learnt that the pain of having somebody remove a wee bit of bone and it’s juices from my body is lessened by having a friendly face to look at, that will talk to me whilst the dreaded deed is done. Today was no different and I had the addition of said person allowing me to squeeze his hand whilst I was pulling labour like faces and wincing. It all helped.

Following that little procedure, we endured a 85 minutes wait, as I waited for the next appointment, known as the GFR Measurement. Google tells me this stands for glomerular filtration rate, which is, apparently, ‘the best test to measure your level of kidney function and determine your level of kidney disease’. In practice, the test  was a right royal faff. It required my  companion and me to go back to the Insitutue of Nuclear Medicine five times over the course of the day to allow some Medically Trained People to take my blood after they had put some sort of potion into my body. Plus, two expertly administered cannulas in each arm. Due to a desire to protect my favourite vein, I opted to have the second cannula in my left hand, which meant I spent two hours sporting what looked like a mitt on my hand. Needless to say, doing up my trousers was quite troublesome. 

The first visit involved the potion being administered along with your bog standard flush. It looked very much like the photograph below.



I then had to wait for two hours before returning to the fifth floor of the magical tower that is University College Hospital, where a Medically Trained Person took my blood. I then returned an hour later when another MTP took my blood. I then returned an hour after that when another MTP took my blood. It was like Groundhog Day, with the added bonus of blood. My blood.



The whole thing was over by 16:15hrs, so let us all keep our fingers crossed that the results show a reasonable renal function. I really need something else to boast about.

Somewhere in the middle all of that nonsense, I had the cardiac test. I think this also required some sort of potion entering my body, but there was so much going into my body, there is a chance I missed it. These days, my motto has to be ‘Just Let Them Get On With It’. 

Even though I lost track of what was going into my body (an excuse for obesity if ever I have heard one), I did not miss having to lie on a flat mental bed whilst a machine took some expensive images of my heart for 15 minutes. I was also attached to an ECG machine. I must not forget that part if you are to get a clear picture of just how exhausting my day has been. I likened the machine itself to sticking one’s breasts in an upside down photocopier for laughs. Again, I documented the experience.





As is evident from the photographs, I found the experience quite sensual, what with the Velcro straps and all. It was sensual right up until the point when I had to sit up, when it became masochistic, well, if I enjoyed it. I did not. My back, along with the small hole in it, definitely did not enjoy the process of sitting up. I also did not enjoy the reminder that I still, after all this time and treatment, cannot lie on a flat mental surface and resurface without experiencing pain.

That was my day. Not all of it you understand, we need some secrets, but it pretty much covers what happened between the hours of 08:00 and 17:00. It was all too, too much for me and at 19:00hrs, I can confirm that I am in need and indeed, in my bed.

It would be most remiss of me not to mention that my day would have been nigh on impossible had I not had somebody to share the experience with me, hold my hand when I needed him to and who entertained me between blood samples. Indeed, his day, selflessly started before mine did, as he arrived at my house before my departure and accompanied home once it was all done. Even though I am tired and my back feels, as the the late and very great Mr Griffiths would say  like it has been kicked by a horse, I have a warm and somewhat fuzzy feeling in my stomach. I take this as both fondness and gratitude. Of course, it could just be because  we discovered the quiet solitude of Cancer Centre’s roof garden and not because my friend did something very nice for me. It’s hard to tell, I am full of unknown potions.





Now, let us all hope that this was worth it and in 15 days time, I’ll be on the verge of shitting my pants.

EJB x

Annex A: I ❤️ the NHS. You may be interested to know that during my day, I was treated by two nurses, four nursing assistants/technicians and saw two receptionists, not to mention the other people I saw and spoke to along the way. My tests also need to go somewhere once they are done and I there are several, faceless people behind the scenes including the people who will process my blood samples, contributing towards my wellbeing. What a service! It makes me quite proud. Also, those people in the labs, testing our bloods, always need a little shout out.