Like A Bullet From A Gun

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

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

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

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

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

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

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

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

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

What a depressing thought. 

EJB x

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

Consent

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

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

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

A lot, apparently. 

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

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

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

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

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

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

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

SHORT TERM
• Nausea and vomiting

• Diarrhoea

• Mucositis 

• Fatigue

• Alopecia

• Immunosuppression

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

• ITU admission

• Bleeding

• Transfusions

• Pulmonary dysfunction

• Haemorrhagic cystitis

• Veno-occlusive disease

• Nutrition

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

• Diabetes

• Myopathy

• Osteoporosis 

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

• Male impotence (N/A)

• Menopause (N/A)

• Thyroid dysfunction

• Cataracts

• Lung fibrosis

• Psychological difficulties

• Secondary malignancies (aka secondary cancer)

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

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

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

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

• Graft failure <10%

• Cure rate 30-40%

• Acute GvHD 50-60%

• Transplant related mortality (immediate) <5%

• Risk of relapse 50%

• Chronic GvHD 50-60%

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

EJB x

The Montage

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

EJB x 

Mashed

Hello there and welcome to Part I of, let’s say, two blogs about my brain function. I assume it’ll be in two parts; I have not written them yet.

The first post will be something of a downer as I describe what it is like to exist with constant Chemo Brain. As a romcom sort of girl however, I intend to pick things back up in Part II with an inspirational story of how I manage to fine some respite from my brain’s drug induced default position of blurry shapes.

So, back to the downer that is Part I…

I need to be clear about something that is commonly misunderstood. Fatigue as I know it now, is not just limited to tiredness. Of course tiredness is a big part of it, but there is so much more to it. So much more that is hidden from your view.

Essentially, my brain is straining and I know it is straining. In the last two months, as my fatigue has increased, so too has my inability to concentrate, think, remember and reason. Don’t get me wrong, I am not sitting at home all day long unable to tie my shoe laces. That’s a bad example, for I actually cannot do up my show laces, but that is not because I do not know how, it’s because my back forbids it. My recent days and weeks mostly blur into one big lump, where time passes quickly, with a noticeable lack of cognitive brain function and imagination. My time passes quickly and yet I do not know how, nor can I recall any use of something I once knew as ‘imagination’. I miss it.

This blog is a good example of my inability to think. When this all started, as much as I noticed that the drugs were frying my brain, I could still form sentences that did not always include ‘of course’, ‘so’ and ‘obviously’. Writing was easy. It’s not easy for me now. I like to think that I am rather witty, but realistically, after a glance through my most recent posts, my wit may well be in my past.

Believing something is better than nothing, I will continue to stick to the same old vocabulary to keep people abreast of My Myeloma developments, even though I know the content is becoming dryer than my skin post radiotherapy. I sit down to write a blog and more often than not, a blankness takes over and what I want to say cannot be said because the words just bounces around my head. If I can overcome that particular hurdle, I then find that the act of writing things down, something that remains important to my overall wellbeing, uses up my daily thought allowance. I blame this for my current, simmering level of madness. That is my story and I am sticking to it.

Waking up one day and realising that your ability to communicate is not what it once was, is not something to relish nor welcome.

After some thought, I still view my treatment as a means to an end, but the truth is, my treatment comes at a big cost that few people recognise and I can quantify. All I know for certain is that I cannot help my boringness, I plead with thee.

I watched a film last weekend, I will not tell you the name of it because I am about to give away a big part of the plot. One of the characters is accused of running somebody over with his car and his defence is that he cannot remember doing it. Why you wonder? The answer is Chemo Brain. An actor playing a doctor actually says ‘Chemo Brain’. Now, I have no intention of running somebody over in a car, I cannot look at my blind spot anyway, but it made me think, slowly, about the losses I have had to deal with on my current treatment… I do not think that the plot development I mentioned is implausible.

I am backing this blog up with examples, silly examples maybe, but examples all the same, so that you do not think I am exaggerating or feeling overly maudlin. When I say that my days blur into one, and that I have a limited concept of time, that is not an exaggeration. Big Sister told me off a few days ago because I had not spoken to her for a week. If somebody had asked me about this prior to our conversation, I would have said that the last time we spoke was a mere few days before the question came ‘where have you been?’. The answer of course to that question was ‘I don’t know’.

Last Monday, I attended a two hour lecture on the Freudian concepts of Eros and Thanatos in modern cinema. Cultural for sure. The following day, I knew that Thanatos meant death, but I could not remember the word. I had to look it up five times before it stuck and by Wednesday I had forgotten the word again. Right now, if I think really hard, I can remember the titles of three of the six films discussed.

I used to have a good short term memory. Past tense. My brain now seems to be built for one man shows because I cannot remember multiple names in one go. A few weeks ago I watched a film in the afternoon and come 20:00hrs, I had no recollection of what the film was. In my defence, the film was terrible.

If modern technology did not exist, if I did not walk around with constant access to Google in my pocket, I would be a word beginning with ‘f’ and ending in ‘d’. I am constantly making notes and scrolling through my messages to see what I have said to the various people in my life. I live in a constant state of fear that all my conversations are the same and people are just too polite to tell me that we have already spoken about what it is we are speaking about the last time we spoke.

There is an obvious side effect to the side effect of which I speak. It’s called monotony. Do you know what monotony does? It makes a person boring. Dare I say it, it makes a person tedious. My worry? It has made me tedious. Of course, nobody will say that I am a god awful bore, at least not to my face, but they can and will think it. My phone records would probably back this up.

A month ago a friend of mine told me off for asking so many questions in conversation. It plagued me for a week or so, until I realised that it is something I do now to firstly enable me to actively participate in a conversation. Secondly, having thought about and asked a question, I am more likely to remember the answer. It is a far from ideal way of engaging.

It has, in my brief myeloma voyage, never been as severe for such a long period of time. Reading has been a constant difficultly and the chances of following the plot of Game of Thrones were significantly reduced the first day I took morphine, but there is so much more to it now. I want to be able to articulate myself. I want to remember to reply to messages and phone calls. To allow the former, I would be greatly assisted in knowing how long a day is. And finally, I would very much enjoy recalling information mid conversation without feeling the need for a celebratory fist pump.

As Part I draws to a close and on the eve of two transplants, my main questions are, how much worse can it get and how many people will still be around at the end of it?

EJB x

The Gippy Tummy

In the last few weeks, I have learnt many a lesson (okay, four lessons). All the lessons revolve around the medical wonder that is radiotherapy; my view of which has changed quite dramatically from when I previously had the NHS brand my who-ha in October 2012. In short:

• Radiotherapy is not easy
• Radiotherapy whilst you are undergoing chemotherapy treatment is definitely not easy
• Never ever ever wish for a gippy tummy
• If you are a female, always prepare for a radiotherapy session as if you are about to wear a string bikini in public

Since my trip to Casualty in June, I have wanted one thing and one thing only, and that one thing is radiotherapy. My pain at that time was such that I believed that fixing that pain was the only way I would be able to make it through my current treatment. On my worse days, my survival hinged on fixing my pain. Do not get me wrong, I loathe chemotherapy just as much as I know it is a necessary evil, but try being on a course of treatment when you cannot bend down and pick up your bath mat, sit on the toilet or pull yourself out of bed. Maybe reducing my paraprotein should be my priority, but it is not. My priority has and continues to be fixing my back, so I can then focus on that pesky paraprotein. Battling the two at the same time takes energy, more energy then I reasonably have. I’ll use my energy on both if I have to, but my effort in doing so is a disservice to both. My pain has taken away too much of my freedom and I just want to reclaim some of it.

The journey from discovering the first twinge of back pain on 27 May, to completing my course of radiotherapy treatment on 29 August has been mercifully quick. Three months may sound like a long time, but all things considered, it has not been that long at all and that is just another prime example of the brilliance of the NHS.

It may have taken a month or so to convince the Medically Trained People, with Operation Radiotherapy, that I could not wait to see if my treatment alone would heal my back, but once that was agreed by the end of July, everything else happened very quickly. Operation Radiotherapy was far from subtle and essentially involved me only talking about my pain during my appointments, much to the dismay of Big Sister who wished for me to discuss my treatment plan. I may not have been subtle, but neither was my pain, which had decided to occupy almost every waking thought, especially the thoughts that came when I attempted to move in my sleep.

On the 6 August I was informed that I would be having radiotherapy and it was most probably going to be in the form of five sessions over five days, targeting the tumour around my L5. I was ecstatic at this news. I know I was ecstatic because I wrote a blog about it. It was during this appointment that I was told that I may experience a gippy tummy as a result of the radiotherapy. Thirteen days later my treatment began.

I did indeed have five sessions, on five different days, but due to the Bank Holiday and my need to see Kate Bush in concert, it actually happened on a Thursday, Friday, Tuesday, Thursday and a Friday. A week prior to the first session, I had my planning appointment, which featured two new tattoos and a CT scan. By the Tuesday session, I was incredibly relieved that I had some respite between zaps and I was not due in everyday. I do not think my body would have been able to handle it. It was a four-five hours a day for two minutes of radiation, and I am a weakling.

The Radiotherapy Department at UCLH is a strange place. It is in the basement of the tower and thus as I waited, I had no phone signal to keep me company. The waiting areas are very much designed for patients receiving the treatment for usual cancerous reasons. They were not designed for people getting radiotherapy to ease their pain. It may sound like a small thing, but waiting for upwards of an hour on a hard departure lounge style chair is not something my spine particularly enjoys. Add that with having to lie down on a slab for ten minutes, bookended by hour plus journeys in a suspension free ambulance chair and what I got was immense jarring pain.

In the secondary waiting area, the opaque windows are adorned with pictures of butterflies and stars accompanied by quotes about the brilliance of nature. This of course, made me guffaw at the thought that somebody, somewhere, believed that this would relax somebody with cancer. It was in stark contract to the stark room with the big whirling machine hidden behind a maze of iron lined corridors. In these rooms, there are six identical rooms, there was a screen for me to protect my modesty as I removed the bottom half of my clothing. I am not entirely sure why I needed to protect my modesty with a screen, when my knickers would be pulled below by bum during each session, when I was lying on the metal slab, with a piece of blue paper over my nunny.

IMG_0049.PNG

IMG_0050.PNG

I found the whole thing incredibly exhausting.

After the first, second and fourth session, I vomited. Vomiting is not a side effect I am particularly used to. I thought I was used to everything. I may have had a stem cell transplant, but vomiting, thankfully, bar a few other occasions on my HRT, had been my only experience of being physically sick. Nausea sure, I live with that daily, but vomiting to me symbolises being unwell and until I experienced cancer, is one that I heavily associated with people having cancer. On the fourth day, I lost a very nice sandwich from Benugo’s. I did not like it. It made me feel like I had cancer.

On days 1-5 and for several days post, I experienced extreme fatigue. After the first session, I got into bed at 19:00hrs and emerged the following morning. Three days after my last session, I was so tired, I forgot that I was crashing on my steroids. Fatigue was not a side effect I was told to particularly expect, but I think that radiotherapy and chemotherapy is something of a toxic mix, and my body was just displaying that for all and sundry.

On the fourth day, I also had my regular clinic appointment, during which I lambasted the false claim that I would experience a gippy tummy. I did this because I am a fool and did not associate vomiting with what one could consider a ‘gippy tummy’. I was just fed up with being constipated that I thought I would welcome a good, thorough cleaning. The treatment finished on a Friday and by Sunday, I was cursing myself and the pain in my stomach. By the Monday evening, after I had spent four hours on the toilet clearing my bowels, I was cursing the radiotherapy. I am a self styled ‘Strong Ox’, but slipping off a loo sit because my naked body was drenched in diarrhoea induced sweat, was enough to make me doubt my stoicism. The next day, Haemo Dad put me in his car on the advice of the Medically Trained People and took me to A&E.

I like to think that my four hour adventure to Peterborough City Hospital was not an overreaction and was a well considered precaution. It was a precaution for many reasons, not least because four days before my neutrophil count was 0.85 and there was a fear that I had an infection. To me it was a necessity because I needed reassurance that everything would be okay. I know many side effects and I know how I should feel on almost every occasion. I had no idea what was happening to me and that scared me.

Haemo Dad had to go off and do some Haemo stuff in PCH, so he was replaced by Mama Jones who waited patiently with me until I got the okay to go home after I was given some fluids and IV paracetamol. As an aside, I can confirm that IV paracetamol can give one a nice, deep sleep.

In my private room, having waited for five minutes to check in with my fellow citizens in the reception, I was rather impressed with the treatment I received. It was thorough, and it was delivered by a Person Medically Trained Funded By The RAF, which led me to seek confirmation that I was not hallucinating. Obviously, for anybody who has ever inserted a cannula into my veins or has been present when somebody else has inserted a cannula into my veins, I was rather less impressed by the size of the cannula (I think I am spoilt at UCLH), or the blood that bled when the tube was removed. It is 15 days later, I still have a bruise.

IMG_0048.PNG
Evidence that I made a third visit in two years to Peterborough’s A&E.

After six more days of sleep, liberal doses of Buscopan, and a £34 round trip to have my bloods done, I felt back to normal. As I said to my CNS, normal to me means heavily constipated. As well as feeling constipated, I also felt embarrassed that I went into my radiotherapy thinking that it was nothing. Not only nothing, but I went in thinking that it would be easy and welcomed the predicted side effects. I was wrong. I would not want to go through it again any time soon.

Time will tell whether the treatment worked. This week, my back hurts more than it has for a month and I hope this is a sign of the radiotherapy is working. I just don’t know. If this whole affair has taught me anything at all, it is that when it comes to My Myeloma, nothing is ever certain.

Dog Poo Bags

I was told to expect a gippy tummy with my radiotherapy. I have mentioned this before. I interpreted the side effect to mean runny poo, maybe lots of poop, but regardless, I took gippy tummy to be bowel based activity. I was wrong. The zap lasting but a few minutes has actually resulted in the vomit. By my standards, a lot of vomit. The sound of which, scared the dog yesterday.

Bar my transplant, I have been fortunate enough in my treatment to date, to have mostly avoided the act of physical sick ness. Nausea sure, we’re old pals, but it has been something that has been manageable with a few pills here and there. Post transplant, the nausea was something that occurred more than I would have liked, but again, with the exception of a few instances, one memorable one in Mamma Jones’ car, I have been able to avoid something that I have traditionally associated with excessive drinking. Something that is preventable.

I have had five radiotherapy sessions, with my last session finishing a mere hour ago. So far, I have been sick after three of them. A quick, paranoia fuelled Google search yesterday revealed that this is a common side effect of radiotherapy of the abdomen area. As my L1-L5 are the things being targeted, I calculated that it is quite likely that my abdomen may be experiencing a little bit of the radioactive spray back.

Today, because I found yesterday rather difficult and my response to it somewhat pathetic, I came prepared. I have only eaten a pot of yogurt with linseed and a packet of Quavers. One could say the rather tasty New York Deli sandwich from Benugo was wasted on me yesterday. I only had this morning’s food because steroids require food in my stomach. Furthermore, in addition to some strong anti-sickness pills last night and more this morning, in my handbag, you would currently discover three doggie poo bags*. I figured that due to their normal function, they are designed without holes to avoid embarrassing and unpleasant instances of leakage. The bags are an additional contingency because I do not get a great deal of warning and I am currently on a train travelling slightly up the East Coast Mainline. I may have experienced projectile vomiting in the British Film Institute last week, but I do fear doing it in the first class carriage (purchased with disabled railcard discount) would be rather embarrassing and most unfortunate for those travelling on to Glasgow.

The good news is that the radiotherapy ended today. The bad news is that I was told that the side effects, the other being fatigue, could last for another fortnight. Do you know what I say to that? A means to an end my friend. A means to an end.

EJB x

* To ensure that this blog was factually accurate, I again visited the world’s favourite Internet search engine and I discovered there are multiple names given to the doggie poo bags. It would appear that it would be far too complicated to call them a ‘dog poo bag’. From what I can see, ‘doggie poo bag’, ‘dog poop bag’ and ‘bio bags’ are the most acceptable terms. I suspect that this is because the general public have a weaker stomach than I do, and need ‘poop’ presented in a sanitised way.

That was a pun by the way, because all evidence suggests that I do have an actual weak stomach. My weak stomach cannot be sugar coated.

Velcade Fatigue

I spent most of my Sunday wondering why I was so tired and then getting mad that I was so tired, before I went straight back and wondered why I was tired. In itself, that process is an episode in exhaustion. The exhaustion of which I speak is relative. It compares not to the Steroid Crash, but remains the worst of what I experience during this volume. It

In my mind, there was no reason for the exhaustion, after all, I am being very sensible and adhering to my rule of having a limited social life with so many early nights that I am becoming predictable. Predictable and reliable that is me. I am all about establishing a regime. Even the Costa Coffee Man asks me about my regime. The Regime permits me to live a reasonable life and secondly, judge when something is going wrong. I think I am getting good at it. At least, I was last week anyway.

Last week, I wanted to punch the air when I realised that I had done a 31 hour week, with three evenings of sensible socialising and a day at the hospital. That is real progress. I am with me everyday, so it is difficult to see when I am getting stronger, but even I could see that by close of play Friday, I had achieved something special. I was even told I had more colour on my face, so, get me and my makeup skillz.

In order to achieve such jubilation, I do have to very carefully balance what I can and cannot do. Laziness has to planned. Not seeing my friends has to be planned. I have to plan it all. Last weekend, I had planned to say relax, because my week had been so jammed packed with goodness. Some would say I had written my weekend off, but that would only be the mean people.

Whilst I had planned for rest with my family, I did not plan for Velcade fatigue. When I realised why I was so tired on Sunday afternoon, I was relieved and annoyed in equal measure. I get to see the pattern now, being sensible allows me that luxury. Being sensible does not allow me the luxury of not having a day of tiredness once a fortnight. The reminder.

Being sensible, however, does mean that I can now plan for it. And plan for it I shall. After all, if this is the best I am likely to expect, then I probably should not dwell on it.

EJB x

P.S. In terms of the actions put in place to mitigate the risks associated with another pattern I identified last month, I am happy to confirm that they are working.

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

Surrender

There comes a time in everybody’s life when they have to surrender. They have to give in. Their hands are tied. They have to retreat. They are getting ready to wash their hands.

I am at such a point. I am at the end of my tether. I am waving the white flag.

I am finally ready for the laxative.

Please do not be disappointed. I no longer have the time to be constipated. Whilst we are on the subject, I do not have the time for the other thing either.

Yesterday, I realised after spending two hours on a ceramic bowl sweating through my nightie, that I was fighting a losing battle. I can recall my 17 month long reason for not taking laxatives but my enemy has changed, and I do not think my weapons are strong enough. I am too busy to remember to prepare and eat linseed everyday. The fortnightly velcade injection is preventing me from forming a routine, and it is keeping me on my toes with its unpredictable attacks. For two months, I have been unable to take my eye off the ball due to a very real fear of being caught short. I am fighting on my own. In this fight, it is not fair for me to slip my bowel woes into conversations with Housemate when he returns from work. Nobody needs to know. Big Sister is also not prepared for my observation on the frequency and odour of my wind. It is not right.

Enough is enough. My head is bowed.

The truth is, there is not enough time between my injections for my body to regulate and there is too little time between my injections for my body to get used to the cleaning product. It is torture or at least any torture I have ever known. Two months of it.

So, with the treaty signed I really home with these laxatives that I, Emma Jane Jones will be able to start making regular, erm, reparations.

EJBx

New Meds

I started taking some new medicine. It’s for the nerve damage in my feet, the peripheral neuropathy. We tried a few non-perscripti0n cures, but they made no noticeable difference. When my doctor first recommended this medicine, I asked what the side effects are. Remember when you were a kid, and you got sick, and your mom gave you medicine and you got better? Side effects were an unknown concept. I miss that.

My doctor gave me a print out, “Patient Drug Information.” When I first read it, I said I would never take this medicine. Then I thought, maybe I should never say never, and try it only out of desperation if it came to that. The print out listed all the standard possible side effects including signs of an allergic reaction, hives, itching, red, swollen, blistered or peeling skin (with or without fever), wheezing, tightness in the chest or throat, trouble breathing or talking, unusual hoarseness or swelling of the mouth, face, lips, tongue, or throat.

On this full page of possible side effects, I highlighted some favorites. I came to realize that I may not have the proper perspective on these side effects. The doc didn’t hand me Patient Drug Information, she handed me a FREE PASS. Let me explain. Included in my favorite highlighted possible side effects is HOSTILITY. At first I thought, oh-no, will this make me hostile? But that’s the wrong way to look at it.  If I need to dispense some hostility, there’s no apology necessary, I would just whip out the Patient Drug Information sheet and point to the highlighted lines. It’s a side effect! PROBLEMS WITH HOW ONE ACTS, is another highlighted favorite. Yes, it actually says that. I suppose I can act how ever I want now, it’s a side effect. CHANGE IN THINKING CLEARLY AND WITH LOGIC. Who cares! Side effect!

Here’s another favorite, NOT ABLE TO CONTROL EYE MOVEMENTS. There was a term we used to hear more often, that a guy was, “Shifty Eyed.” It usually meant he was suspicious, probably up to no good. Now I can be shifty eyed, have a problem with how I act and think, I can even get hostile and if anyone has a problem with it, call my doctor, it’s all side effects!

There’s one more I highlighted, TWITCHING. At first I thought this could be really bad, but, you know, I’ve never been a dancer. If I get this side effect, and the music is really loud, I could be a cool dancer beyond my dreams. If anyone would suggest that my dancing is kind of stupid, hey, it’s a side effect! It’s not really me!