Tag Archives: tumour

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

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The Fear – Part I

I used to be afraid of many things. Several things in fact, despite having a pride in being able to manage a spider or any such creepy crawly, I was quite the scaredy cat. It is for that reason that my knowledge of horror films is so distinctly lacking. My worst nightmare would once to have  swallowed a goldfish, but even that causes less goosebumps in me than they once did. I’m not an ox, I still would not enjoy it and any trip to an aquarium equites avoidance at the tanks at all costs. Even the recent odd sighting of a mouse in the flat (mice in Spring, seriously?) has caused more of a whelper than the once or thrice shriek of years gone past. I say all of this, because I have quite a strong inkling that I now know what real fear is. It’s not an inkling in fact, I most definitely know what fear is now and it is all linked to My Myeloma. Myeloma, with it’s series of unknowns and what ifs is terrifying. My Myeloma, which seemed to have inherited the most dogmatic of personalities, so far, can do whatever it wants to me. What I want, what I will and what I need, is barely a factor. In my world, it is, what it is.

Where am I then? For the last few months, since the beginning of the year, I have been experiencing increasing pain in my left arm and in the left pelvis. The pelvis issue is a long standing issue, worsened by my holiday in November and maybe some excess (unnecessary) walking in Amsterdam. When one like me has such keep-you-up-at-night and cannot-climb-into-the-shower sort of pains, there is only really one way to find out what is causing these particular pains and that is the MRI Scan. 

Long time readers with long time memories will know that I loathe the MRI scan. My first one on 20 August 2012 was, without a hint of hyberole, the most pain I have ever experienced in my life. I loathe the procedure, but most of all, I cannot abide waiting for the results of an MRI. I’m terrified of the big reveal. And that, my dear friends is where I currently find myself. Waiting for a Big Reveal.

I can imagine what you are thinking. You are probably thinking there will be no such big reveal, and the pains are just minor things and if there is anything lurking on her bones, then they can be simply zapped away. I say that to myself. Sometimes. Inside my head, I am thinking about massive tumours, secondary cancers and death. Housemate is currently particularly fond of telling me that the pain I have is a trapped nerve. The problem my politeness fails to reveal, is that I know my body. I have known every time I have relapsed by the new pains and I know that this is what is happening to me this time. 

The problem with this time is, what do we do three transplants in and various treatments later, if I gave relapsed? Don’t think about it. Don’t think about it. DON’T think about it.

Clearly I am thinking about it? So, planning  ahead, and realising that I occasionally do need somebody to hold my hand, I asked for Mamma Jones or Big Sister to attend the clinic appointment that followed by MRI scan on Saturday 25 March. It’s mostly so they can listen and ask questions, in the event of me becoming a shelf shocked mute. We had five days to wait for this reveal and believe me when I say, it was a substantial wait. As I am a behind in the story, and to create some more suspense, I’m going to make you wait a little longer too…

In the four weeks prior to my scan, the nerve pain in my left arm had become unbearably worse. I couldn’t sleep properly nor hold a proper stance. I had taken to wearing a sling outside, not because I wanted to be on the cutting edge of fashion, but because I thought it would give my back a break from carrying around my 2 stone + of arm. Gone was the medically trained idea that it was caused by neuropathy caused by previous medications and in were words like, ‘previous disease’ and ‘tumour’. My personal favourite was ‘not to alarm you, but if anything changes, go to A&E right away’. 

And with that, I was left in a long, hot pressure cooker.

As you might have surmised, initially, if there was an alarm, the Medically Trained People did not show it. A feat in medical training. I had lost feeling in half of my hand and had constant shooting pains in my arm. But, as the pains showed no signs of abating, I was prescribed medications. Lots and lots of medication. 

I have always considered my pain relief systems rather light, but in the matter of a few weeks, I had gone from having 80mg of MST (slow release morphine) twice a day, six paracetamols and two Lorazepams which doubled up as my anti nausea tablets. To, 100mg of MST twice a day, plus breakthrough pain relief, eight paracetamols, 300g three times a day of Gabapentin, four lorazapam and then in increasing doses finalising at 50mg of Amitriptyline, to allow for something resembling sleep. Even my ever increasing nerves were unable to shit that increased intake of medication out.

So not only was I in constant pain, I was constantly exhausted, making me feel constantly irrational. A sleep however, even if it is drug induced, proved better than no sleep at all. Even if I did feel like I was on the edge of my seat the whole time.

Despite all of this, I still tried to be strong. I mean, I didn’t really sleep much in the week leading up to my appointment and I relied quite heavily on my friends to keep me distracted, but I socialised and I laughed. Thankfully, the weekend of the 25 March was not just the weekend I had an MRI scan, it was the weekend of my most dear friends’ wedding. The distraction was just the tonic, even though I had to leave early on one day because I felt like somebody was playing the banjo on my funny bone. 

This is a picture of me to prove that despite looking dead, I was still doing my damnedest to live, as Miss Havisham. It also shows I exist.

Wondering what was going on was never far away. I’m going to let you into a little secret, in November, as part of my attempts to medically retire, I received a letter saying that I had an outlook of 12-15 months. 12-15 months! Ever the pragmatist, I took this as the worst possible case for my 32 year old lifeline and hid it in a drawer somewhere in my brain. There are no finite treatments remember. 

As much as I like to pretend I’m a fighter too, I’m more inclined to think the worst when expecting test results. Katy Perry wasn’t going to hear me roar. As the days grew closer and the pain increased, I couldn’t help but be reminded of this timeline and these facts. Add to that every possible consent I have ever signed for treatment, noting severe side effects (SECONDARY CANCER) and I had become a shaking, irrational, moody pants. Afraid of upsetting myself with my almost self fulfilling prophecy, but terrified of it being the truth and constantly, on loop watching  my life slowly erase from the lives of the people I love. 

Who knew that lying down on a machine for what was nearly 2.5 hours could cause that sort of fear in me, but it did. I think I hid my hysteria well, but that’s just my personal opinion. These discussions, less than five years into My Myeloma journey seem real now.  I am afraid of dying, but I am so scared of leaving my friends and family. 

I have long discovered that this is not a subject anybody who loves me wants to entertain. It’s definitely not something, in the middle of tests one can really talk about because one is trying to be hopeful. It was all I could think about. I felt so duplicitous and defeatest. Some mornings, when Housemate left for work, I would snuggle up to the Bruce Dog and think ‘are you going to remember me?’. I would then apologise to him that I couldn’t lie on my left hand side because my pelvis just couldn’t take it and worry he was going to hate me because one day, I won’t just leave on a weekend trip to my parents’ house. On the issue of my pelvis, this is indeed a mental fight I have with the dog on a daily basis. He doesn’t understand why I have to lie on my right hand side. He’s a bloody dog.

So, then the day came. My clinic appointment at UCH on Thursday 30th March. I was so nervous, I ploughed down a  packet of Refreshers in my first 15 minutes of waiting. My need for sugar was greatly met by my Big Sister with a nice, unhealthy slam of Tablet. The best food with a medical name on the market. I don’t recall much of the waiting period. I know it was a few hours and I did my customary monthly pregnancy test. I remember Big Sister saying my favourite Medically Trained Person had a good poker face, but that was it. 

What fate was going to greet me when I was eventually got called through? Then it happened, I was called through not by a registrar, but the Head of the Clinic. Bad news. I walked in with my best smile on and my head held high, for that is all I have always done.

The MRI scan did show disease in my neck, which is causing all the pain in my arm and my arm. Blah, blah, blah. My pelvis is also in such a state that it’s impacting on my muscles and it is for that reason, I have required a step stool to get into bed these last few months. Fortunately, these little nuisances can be treated by radiotherapy. Frustrating, sure, but fixable. I exhaled. Briefly.

For what came next, could well have been the worst thing I have heard since the day I found out I had myeloma.

You have stopped responding fast enough to all traditional Myeloma treatments…’

And with that, maybe a minute or so later, I cried.

To be continued….

EJB

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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.

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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.

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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.

🙏

EJB x

P.S. Blame the fatigue for the length of this blog; I certainly do.

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