Tag Archives: Bed

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. 
…………………………………………………………….

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

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That Friday Feeling

That goodness it is Friday. Such is my relief that I have made it to Friday, I will repeat my gratitude for it finally being Friday. I have wanted it to be Friday since Saturday night, and what do you know? The day has finally arrived.

I am thankful it is Friday not because I have had an arduous week at work and I am getting ready to let off some much needed steam over my weekend break, I am thankful it is a Friday because I have had an arduous week in my bed and now, I no longer have to be in there. I knew two weeks ago, as my last crash drew to a close, that I would be unwell this week. I opt to take all my steroids in one go, and I know that the consequences of that is an empty brain and a weak body. It is how my cookie crumbles. Even though I know that a massive cloud will be over me for up to a week and I can prepare for it, it is still an incredibly hard thing to do, and around Monday or Tuesday (days 5 and 6) there will be a point where I want it to end and it is for that reason that I am glad it is Friday. I have another one in the bag, it’s almost a dignified bag if you discount all the talk of poo in my flat this week. I no longer have to worry about how and if I am going to manage my crash. I am glad it is Friday because this crash did not break me. I will have the same goal in three weeks time.

On my new treatment, I have now had three steroid crashes. The drugs remove the brain capacity for me to be able to tell you how many days in bed this equates to. I can tell you that between Sunday evening and Wednesday morning of this week, I existed in the confounds of my flat only, with just a pleasant man and his dog for company. Had I not had to attend the hospital on Wednesday, I wager I could have added a day to that tally. With the three crashes in six weeks, and the ten I had in My Myeloma’s first incarnation, one could say I am an old pro when it comes to how I should manage them. I mean one could say that, whether it is actually true is a different matter entirely. I am being more organised, but the truth is, I get through it on a wing and a prayer. To me, a successful crash is one where I do not allow myself to feel too sorry for my situation. Using that barometer, this crash has been a moderate success.

For the block of days every cycle when my mouth always tastes like tin, the skin around my neck and back feels constantly bruised, I cannot follow a simple conversation, the need but not necessarily act of sleep is my constant companion, my mood has been altered to such a point that the threat of paranoid induced physical violence is never far away nor is the dizzy spell and I am so constipated that a suppository just will not do, I do seem to be developing some key skills and tools to keep my frown upside down. The crash situation is always precarious, but I have found that these few simple things make it much more bearable;

Where possible, I should look after myself, it may not be rocket science but this crash is my job and I want to get an exceeded

• A fully stocked fridge and freezer, specifically with items that can be reheated or prepared in five minutes

• Fresh fruit ice lollies, sour drinks , Starbursts and anything else that will temporarily remove the taste of metal with a hint of vomit flavoured halitosis

• The shower, never underestimate the power of a clean peach

• Getting dressed and moving, even for an hour, from my bed to the sofa is the equivalent of an exhibition and a trip to the theatre during crash week

• Having a Mamma Jones and a Big Sister on the other end of the telephone to chat my gibberish with me

• Colin and Bruce.

• Films from my childhood that have been seen a morbidly obese amount of times

• A tidy and clean(ish) flat

• Funny anecdotes from the outside world, or failing that, people letting me know that they know I am running a metaphorical marathon

• In this heat, a fan permanently directed at the body

• Remembering that it is just da ‘roids and in reality I do not hate myself and everybody else

• The knowledge that it too shall pass and I can make it until Friday

My fingers are crossed that these tactics will work in cycle three. One thing is for sure, in just over three weeks time, I will once again be wishing it were a Friday.

EJB x

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Crashed

Last Thursday morning, I woke up and asked myself how it could possibly be Thursday morning and I promised that I would write about how I had spent three days in bed with time on fast forward, later that day. The only issue was that on Thursday, I was still in bed and my time was still on fast forward. It was a feeling that lasted for a further two days. It is Monday morning now and I no longer feel like my time is just passing me by, nor do I feel like I need to stay in bed all day. It is a feeling that I can only describe as an achievement. An achievement that needs to be embraced in moderation, obviously.

The fault lies with the steroids. The beastly steroids, steal my time and effect my mood, and try as I might, when it happens there is not a damn thing I can do about it. Last week, I was crashing. I want to give what happens to me a new name, as I doubt the word ‘crash’ is medically accurate. Though a ‘crash’ is exactly what it feels like to me. My body stops, so too does a lot of my cognitive function and I temporarily do not feel like myself. The time goes by so quickly; the lack of achievement feels like a complete waste of my 30s.

Here’s a little secret; cancer is not glamorous. Sometimes, you really do have to lie in bed, sweating, whilst flashing your knickers, shoving ice lollies down your gob to enhance the taste buds, for five whole days. Knowing that whilst you, or in this case I do this, everybody’s life around me just goes on like normal. I am one to blow my own trumpet and as I told myself last week, it takes a certain amount of bravery to do absolutely nothing and not cry hysterically about it, feeling insanely sorry for oneself.

My week, my friends, went a little monotony like this…

On Monday, my mouth tasted like I had had an every lasting metal flavoured gobstopper and I was tired. I was not tired because of my steroids, I was tired because I had spent too much energy on the Saturday before the Monday. I therefore decided that my flat was where I needed to be. I also completed the last parts of my crash preparation, which pretty much involved making sure that the fridge and freezer contained food that could be cooked by a brain dead zombie experiencing dizzy spells, who struggles to bend down and calculate timings. The preparation was important, I had decided in the week leading up to it that I needed to see whether I could look after myself during a crash. I also decided that it was essential for me to succeed in this challenge.

I cannot remember anything else about Monday apart from the fact that I watched a film with Housemate on and I told him just before I went to sleep that my crash had started. It’s a subtle change, but last week the first thing I noticed, apart from the horrific taste in my mouth, was not the fatigue but the fact that the skin on my neck and shoulders felt bruised. This is what steroids do to me. Well, it is one thing steroids do to me.

Tuesday and Wednesday are a blur. Tuesday and Wednesday were the worst days. I know I showered and got dressed, but neither activities occurred before midday and neither activity was what I would describe as easy. I started several films, but I do not think I actually finished any in one sitting. I wanted to sleep and when I was not sleeping, I was really just staring at the tea stain on my bedroom wall unable to collect my thoughts. I may have spent a lot of time looking at my phone, hoping for and getting news from the outside.

I did not leave the flat during this time. Not because I did not want to, but because I knew that I probably would not have been able to get anywhere. Housemate cooked me dinner and encouraged me to leave my bedroom, which was a good thing. Moving the 16 steps from bed to sofa, gave me a nice change in scenery and online demand television service.

I was not maintaining a spreadsheet of my activity, but it would be remiss of me not to mention that during these two days, at least two hours of my time was spent attempting to toilet. On Wednesday, after 45 minutes I had to give up because I had a dead leg. If you want me to be graphic, it was my right leg.

By Thursday, when I felt it should only be Tuesday, I needed to escape the flat. Escape I did, 10 minutes in a taxi to a matinee screening at my local cinema. It was progress. I also made a little trip to Sainsbury’s on my return to stock up on ice lollies. I was out of the flat for three hours and that was enough for me. It was too much for me. By late afternoon, I was back in bed, feeling once more like a zombie. If zombies also experience inexplicable rage, which after I few hours, I deduced was due to the fact that from Friday-Monday, I had taken a rather hefty dose of mood altering Dexamethasone and not because Housemate made me wait less 30 seconds to reach my ice lollies.

Friday was much the same as the three days that proceeded it. I was improving, I know this because I actually cooked something rather than reheat something to eat. I also cared about what I ate and it was not something I had to do for energy. Okay, I also went out for lunch with my cousin. That trip, was a whole hour out of my flat.

All in, last week was a frustration. It was not helped by the current humidity in London. Heat and steroids are not a happy cocktail. That said, it was not as frustrating as I thought it would be. Unlike a fortnight ago when I thought there was not a chance of me getting through my treatment, I realised as I was lying in my pit, that I would get through it. I cannot sugarcoat it, the crash is awful, and I hate that because of the extra dose in my first cycle, I will be crashing again next Monday. Next Monday for goodness sake.That said, this is temporarily my job. Taking my medicine, doing what I am told and spending a week in bed, is my new job. If I think about it this way, I know that I can banish some of the frustration away. It is not laziness. It is just the way things are for me.

I do not want to embarrass anybody, but I know now that whether I crash in Deeping or London, there are people around who have my back and are on hand to assist me, should I need it or request it. The need and the request, do not often go hand in hand. I felt thoroughly supported last week, and although it was me feeling and looking a mess, it felt almost like a team effort with Bruce as the mascot.

I friend told me that on Thursday of last week she went to an exhibition, to a lunch, to the cinema and then went out in the evening. Her day had more activity than my five days in bed. It had more activity than my entire week. I will learn in time to not get jealous about such displays of energy. Like I said, in a week’s time will be a good place to start.

As for my weekend, well, I ended the crash with a casual trip to Buckingham Palace. That in itself and the two shandies I had in the evening, meant yesterday was a day of rest. Now let me tell you something for nothing, after a week of not being able to leave my flat, a day choosing to stay in my flat watching a sitcom aimed at females, may be one of the finest feelings known to myeloma-kind.

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Buckingham Palace

And now, I shall attempt to have a fulfilling week. I need to refill my cupboards. Stat.

EJB x

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A Good Night’s Sleep

The secret to a goodnight’s sleep seems to be well and truly hidden under a rock that has been buried at sea, for this particular post transplant myeloma patient. This does not please me. I like my sleep. I love my sleep in fact, but in the post transplant world, my sleep seems to be more of challenge rather than a pleasure.

And I suffer from fatigue! Oh the confusion of it all. Fatigue, rest, sleep. In my mind, they are mutually exclusive, and that does not make for an easy life.

The perfect night’s sleep, as I understand it, has an attractive person get into their crisp pyjamas at 22:30hrs, slide under their bed sheets at 22:33hrs, turn off the light at 22:35hrs after they have removed their spectacles, close their eyes five seconds later, sign a sign of contentment, to then awake eight hours later. That’s the dream.

I was once told by an old lady trying to feed me a red apple, that good people should not experience this world between the hours of 00:00hrs-06:00hrs. Evidentially, I am not a good person. In reality, my sleep is not a continuous, uninterrupted visit to my dreamland, which I am sure everybody wants in life. My sleep is not now categorised by irritating insomnia. My sleep does not look like the ritual mentioned above, my ritual is something else entirely. My sleep has become an endurance test, or a 4’6″ x 6’3″ nightly edition of the Crystal Maze. My challenges include, but are not limited to the following;

* The Hot Flush – these are dire, they make my bed smell and they force me to sleep in my knickers. I experience at least three of these a night. I do not want to make anybody have ill feelings towards me, but yesterday, I woke to found a sweat ring around where my head had been on the pillow. They cannot be combated even if I roll over to the cooler side of the bed.

* The Weak Bladder – this is self explanatory. I have not peed in my bed yet, if I could change my bed sheets by myself, maybe I would do. I cannot however, so I have to get up.

* The Nighttime Thurst – an unexplained phenomena, that encourages the point above.

* The Back Pain – a quiet constant, awakened if I attempt to move at all in my sleep. Previously, on my initial diagnosis, I learned to sleep without moving, the pain improved and I rejoiced by doing a starfish. The pain has now returned, but the need to move has not.

* The Easy Pins and Needles – introduced after two rounds of Velcade; enhanced when one remains in the same position for longer than an hour. Also includes the ‘Dead Limb.’

The challenges sometimes double or triple up. Sometimes, occasionally, now and then, once and a while, they come all at once. That blows my minds because some of them contradict the other. One thing is for sure, they each come at least once a night, and have done so since I had my blood played with.

I am told that they will all improve with time. I remain hopeful. With regards to the need to urinate, I will give the imaginary Them, that. They were correct. As for the rest of it? Who kNOWS.

At least with the insomnia, I was physically comfortable…

EJB x

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Broken Record

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

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

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

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

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

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

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

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

Clearly, I need some work on my patience.

EJB x

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Happy Anniversary

Get ready throw paper in my general direction, for today is my first anniversary. Correction, our anniversary. Who would have thought that one year down, and my arranged marriage to myeloma is still going strong? We haven’t even needed to take a break yet. We have been entwined for 364 days. Myeloma and me.

One year ago, on that fateful Friday afternoon when I was told that they were almost certainly had myeloma, I had no way of envisaging what that would look like and what it would do to me. I don’t think anybody did, even the Medically Trained People.

Since the 17 August 2012, so much has happened, and though at times, I feel like I have absolutely no progress whatsoever. It is gone quickly and at a snail’s pace. Sure, I had a partial response (that’s officially terminology you know), but then I didn’t. I then had another course of treatment for which I had a limited response (that is not officially terminology), and then I had a transplant. What comes after that is for Year Two. I said it at my halfway mark, but it does not hurt to review what has happened to me since I was diagnosed.

Medically, it has been a total treat for me. I now have a high pain threshold, I am excited by my faeces and developed a fear of Oramorph. These things have happened because I have had two different courses of treatment, which in total involved 40 Velcade injections, 24 doses of Doxorubicin, 224 thalidomide tablets and 800 horrible Dexamethasone tablets. Lord knows how many maintenance drugs I have taken, I wager that in the tens of thousands. I have had radiotherapy on my right hip, which is involved me getting a tattoo on my lady garden. I had my heavenly Kyphoplasty. In February, I got to have a large bag of cyclophosphamide leading to a rather pleasant bladder infection and a trip to A&E. I have no idea how much bone juice (Zometa) I have had, but I know that has done some good. They have drilled into me three times, with three bone marrow biopsies. My stem cells were harvested and then after a lengthy and devastating delay, they were put back into me. If I had been scared of needles one year ago, it would have been, well, pretty buggered. In addition to the medicines and procedures, I have slowly watched and be told that my veins have become shyer and shyer, I have managed hair loss including losing all of it twice, I cracked a few ribs and I taught myself how to walk again without grimacing and dealt with the high probability that I will not be able to have children.

It’s not what I imagined for my life.

I discovered early on that myeloma is not just about the medicine. It is about me. As I have struggled with my drugs, and the lows getting lower, I have had to deal with myself and I never know if I have managed it properly. I have no idea how I have taken it all in.

Fatigue, not working, becoming disabled, accepting that my lifespan has reduced, whilst trying to block out the noise from strangers telling me that I will be dead in ten years (nine years now) for I do not plan to be. It has and continues to be an emotional roller coaster, and it would be that anyway, before we factor in the mood altering drugs. I have cried a great deal, argued with friends leading to more tears, I made certain people key players in my Support Network regardless of whether they asked for the role or not, consequentially, I have felt and continue to feel a warm fuzzy feelings of love when i look at their faces, but flip the coin and I have also felt disappointment when people have not lived up to the expectations I put upon them. I fancied myself in love and had to deal with the heartache of realising I am Glenn Close with cancer. I have been angry with everybody for not understanding how I feel and jealous at them for not having to understand. I have experienced such feelings of isolation and loneliness, on the island that is my bed that I have sobbed uncontrollably for hours. In a year, I have given up so much and yet, I have I still wake up everyday.

Some time ago, well, within the last year, somebody said to me that he knew I would be fine (he was talking about my mental state, for he was not a Medically Trained Person, a first aided maybe). He said this because unlike other patients he saw, he said that when I answered questions about My Myeloma, he saw a laughter behind my eyes. I do not particularly buy into that sort of greetings card language, but I know what he meant and I felt it. I felt that my personality was still there and I felt like my glass was half full, all in spite of the wretched disease. I do not know if I feel that now, not everyday. Over the year, I have felt My Myeloma slowly suck out some of my positivity. It hasn’t gone completely. I hope it will not go completely, and I am clinging on to it for dear life. It just feels like it has depleted. I am not looking at myeloma with rose tinted glasses anymore. Big Sister says I am morbid, but I see it as realistic.

I have had few days where myeloma has not featured, and had many days where it rules. I still do not want my myeloma to define me, but I know now that it has to form part of me and my personality has changed. That is what the year has shown me. My Myeloma is omnipresent. I have dealt with it by living around it and getting on as best I can, but it is there. I know that this is all I can do.

So, one year down. The only thing for me is to continue to get out of bed everyday, and hope that I can remain strong enough not to let My Myeloma to consume me. That would just not do at all.

As for my Support Network… Thanks. Go easy on me yeah?

EJB x

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Invincibility

On Tuesday, I had to drag my sorry bum to London Town for an appointment at the hospital. I was not looking forward to it for the simple reason that I did not know whether I would physically be able to manage the journey there and back again. I had been dreading it since the day of my discharge. It was going to be one long afternoon. Fortunately, I had an escort.

It would appear, that for the time being, I once again need an escort for all activities in public. If I am honest, I like to know that somebody, whilst leaving me alone, is in shouting distance when I am in private, so for outside world… The outside world is once again, a scary, terrifying place. Avoid it for a month, without a medical procedure and see how hot you feel. I’ll let you into a little secret, I got scared feeding the ducks the other day, not because I think mallards are evil, they are not, it’s because I was convinced everybody was looking at me and oblivious to me at the same time, meaning, the general public, that mass being, exists to take me out, to take me down. Danger. On Tuesday, in Kings Cross Station, I found myself wanting Middleborough’s human protection force, which is activated in crowds. It eases the internal panic. The bubble. Fortunately, I had my stick and my Mum. The train itself was fine. That my friends, is called First Class.

Getting dressed, when you have not put clothes on for a while, is interesting. My clothes are still not baggy. I may have felt marginally better than crap when I woke up on Tuesday, but I would be damned if I did not make an effort. Whilst I was making an effort, I discovered that I may now require false eyelashes. I knew I would require a wig. The double hat thing is not for me. I was also reminded of the fact that lipstick gives me power. Getting dressed is a funny thing, it is still my armour; the power of it can be considerable. I arrived at the clinic and I saw somebody who had a transplant the same day as me, and I realised that I, with a wig on my head, do not look ill. I do not look like I have cancer. Still. A lot of people in the centre on Tuesday did, but I do not. It doesn’t make me better or worse than anybody else, it’s just an observation that I do not understand. I am ill, so why do I not look like them? That said, I did enjoy the compliments and I am vain enough to continue wearing a wig in the heat because I want them to continue. Especially because I am still obese. Maybe I have the obesity to thank for my current skin deep, make up assisted, look of health. I still remember last year, when I was diagnosed, I had a very nice doctor in hospital, who failed to recognise me as an outpatient, because I ‘looked so different’. It’s called style babes. Anyway, he recognised me when he saw me a few weeks ago in hospital, in my coton pyjamas once again, after I had just shat out some green goo and was sporting a greyish hue.

The appointment itself was good. That is the point of my story. In fact, my appointment was positive. It was so positive, I could feel my mood instantly shift and hope, somehow magically returned to my being. Hearing the phrases ‘you’re doing incredibly well’, ‘your bloods are almost normal’ and ‘you do not need to come back for a month’, from a Medically Trained Person, made me smile. I do not feel like I have had much to celebrate of late, but hearing that, made me feel better. Hearing that I could go abroad in two months, go to the cinema NOW and that I can ease my strict diet, made me feel invincible. Mamma Jones was amazed with science that my bloods, bar my neutrophils, which are hovering just below 2, are back within normal range. Even my white blood count, which is low, is in a ‘normal range’. Let us hope the paraprotein has not picked itself up quite so quickly. Really.

My invincibility was great. I was dishing out the banter to anybody who crossed my path, I ate a large hot pork roll and crackling without any concern for my welfare, and more crucially, I gulped water. I even had three whole sips of fizzy water. I did it all, because I was invincible. There would be no consequences. So burps, no sick, nothing.

Not nothing baby. Do you know what happened next? I got tired. All so very tired. My bloods might be getting back to normal, but my fatigue is still around. It’s here and it can take me down very, very quickly. I was told during my appointment that this will remain for a while yet, and I still have to give in to it. I just temporarily forgot. I also forgot that drinking still makes me nauseous, but there is medication for that. I believe, halfway back to Peterborough, I crashed. The crash is not me being a wee bit sleepy, a crash involves my head becoming heavy, my body aching, blurred vision and adopting the walk of an OAP thirty four years after the point they officially become a senior citizen. In Toys’R’Us I could barely stand and by Tesco? Well, I wanted to vomit all over the public. On my return home, I got into bed fully clothed and fell asleep, and I spent most of yesterday in bed too, with a brain full of mush. I expected as much. My nurse was correct, I am going to get frustrated by my fatigue, but for the moment, there is a balance to be made and I still need to accept that.

I mentioned the other day subtle changes. Stay in your seats, but on Tuesday morning before I went on my adventure to Euston Road, which I never want to see again, I managed to walk up my parent’s staircase (my room is downstairs, so it is not something I do everyday, I’m just setting the scene, like I said, stay in your seats) and I did not get tired until I reached the top. That would not have been true a week ago. Two steps made my legs feel like jelly and made me feel like I was in danger.

Subtle changes. I am still tired and I am still in bed, though I am contemplating putting a bra on and moving into the lounge.

I can do anything I want to baby. I am invincible. Within reason. I still cannot drink a lot, nor eat a lot, I guess I cannot stand up for long and my brain is still fried, but, you know, invincible.

Cancer turned me into a super hero.

EJB x

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The Red Herring

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

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

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

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

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

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

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

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

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

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

All of it, really is very annoying.

EJB x

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

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Admittance

At 15:00hrs this afternoon, I returned to my room, hoping that I would be able to get through the night before I became neutropenic and before my diarrhoea worsened.

Evidently, this did not happen.

After hours of checking my temperature seeing it creep towards 38, and managing my frequent trips to the toilet, Mamma Jones called the Ambi Care helpline at 21:00hrs, and we were told to come in via Accident and Emergency.

So, a quick walk up to Warren Street Station, and down Euston Road later, to A&E I arrived. By which point, my fever was in full bloom, and I looked like , well, I do not know what I looked like. I looked unpleasant. Mamma Jones said I looked like a criminal.

They helpfully would not let me sit in Reception, which led to me standing in a corridor for 5 minutes. I was seen in the tiny A&E room before I was moved, in a wheelchair to the section where the exciting things happen on Casualty.

You hear a lot of crap here. We literally heard somebody crapping themselves, which definitely smelt ‘offensive’. There I was until 23:00hrs, during which time, I was squirming in pain, trying to think of the correct answer to the official medical barometer of pain, had tests taken and I was seen by a haematologist. He established that I was neutropenic. I had a temperature of 38.2 and I really did feel like an alien was going to come out of my belly.

Due to the smell of faeces, I was moved to a private room, whilst they located a bed for me. There were no beds in haematology. Brilliant. Slick. Efficient.

At 23:56hrs, I arrived in my room for the night, I say night, because there is no way I am staying on a general ward, under the care of nurses who do not know what myeloma is. I am tired, I am in pain, I am on oramorph, and still I can confirm that I do not like this room. I doubt that it has been properly cleaned for I have found a jug with urine in it and there are blood stains on the floor. I have been advised not to touch a lot in my room. Mamma Jones apologised for my reaction.

Now, to try and sleep. I can see Gower Street… I want the penthouse.

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Side Effects

I’m alive. I’m alive. I’m alive.

Hello there. I would like to say that the reason I have not written a blog for so long is because I am so well that there is simply no need for me to off load my thoughts into the ether to prevent me from having a psychological breakdown, but alas, that would be a lie. And I am all about the truth. The truth is simple. I have been too tired. Tiredness sounds like a weak excuse, but it is not. I have been experiencing a tiredness that is so overpowering, I can spend a good two hours staring into space before I have realised that this is not a good use of my time and then when I do realise, there is not a damn thing I can do about it.

To be absolutely clear, this tiredness is quite different to a steroid crash. I do not feel ill when I am tired, which is a bonus. Unfortunately, whilst I do not feel sick, the tiredness just creeps in and completely takes over every other part of my being, so that the only thing I am capable of doing is lying down by myself with nothing but blankness from my brain for company. My TV may be on, but I am not watching it. I may even be able to produce some words to Housemate, like, “night”, but essentially, I feel like my brain has shut down. Blankness is the best way to describe it. If you could see me, and I could gesture to show what it is like, I would produce a confused look on my face, with my mouth open and make a constant dull moan. Let us add a metaphorical ringing in my ears, for luck. I see it as a form of stupor. At times, I worry that I am catatonic. The tiredness by the way, to ensure that we are all on the same page, is not about sleeping or my need for more sleep. I find that sleep and tiredness do not necessarily go together like a horse and carriage. Is this enough? Is the incapability explained?

As my last treatment cycle drew to a close, which by the way, was last week, it became increasingly clear to me that the tiredness was getting worse and thus my ability to do normal things was reducing. I found myself longing for my steroid crash (a ridiculous notion), because it would allow me to spend time in bed. I do not think others would judge me for spending more time in bed, but I would judge myself. I have said previously and it is my desire, that I want to live as normal a life as possible. During my cycles, after the crash, I try to do this, I try to be normal. I make plans, I go to work, I see people or at least I try to see people and at the start of VDT/VTD this was fine. I could achieve everything I wanted to achieve. Now? I cannot achieve or do everything I want to achieve with my time. By the time I get into my bed, which is key blog writing time, everything has been spent. I am done and the ringing commences. My body is in the middle of a war with my brain and the body is winning. I am essentially stuck in a stinking, dirty trench.

I believe an example would help hammer home my point. Two weeks ago, I had a day where I had three things planned. Treatment, a trip to Tunbidge Wells and then a show in the evening; I was very much looking forward to the latter. By the time I had completed the first two, my body was so exhausted and I felt so incapable of doing anything, I cried. I cried on my bed like a big old baby because I could not see how it would be humanly possible for me to get my body out of my flat, on a bus to the Southbank and back. The thought of it made me panic. Panic because I did not know whether I could last another four hours, and if I couldn’t, predicting when my body was going to breakdown. Was it going to breakdown at the theatre, were my friends going to see? Were they going to realise that there are times when I cannot make conversation because my brain shuts down or are they just going to think I am a rude self indulgent bitch incapable of holding a conversation? Which option is better? Breaking down at the theatre was my preferred option to doing in on the bus, because at least then, I could hop in a taxi home. But what if it happened on the bus? That 30 minute journey would be excruciating and then, would I even have the energy to walk home when I reached my stop? Then I panicked because I did not want to fail. I wanted to go out and defeat was not an option, well, it was, but I believe if I had allowed my brain to lose, I would have spiralled into a pit of depression. In the end, I went, I ate some food and that gave me some energy for four hours, but it was a struggle. I subsequently spent much of the next day in bed. Well, until the evening when I went on a hen do.

That was the day I realised that the tiredness was not run of the mill and I was officially drowning in it.

The wicked truth is that I have been taking thalidomide every day for the last 91 days without a break, and it is taking it’s toll of my body. The Medically Trained People told me to expect my side effects to worsen as I got deeper into my treatment, and my, were they correct. The main side effect for me, is not the neuropathy, it’s the fatigue. I have three weeks left of this treatment and I know that I am not going to be capable of having multiple plans in a day. At the moment, if I do have multiple plans, I worry about when I can squeeze in rest and if I cannot, whether I am going to be able to do it. Everything in Myelomaville is a balancing act, and unfortunately for me, I am just going to have to give more weight to my bed. Perhaps I need to conduct my life solely from my flat again, because I am finding that even a solitary plan can be exhausting. Knowing that I have to walk from a to b, or get somewhere, or speak to people, makes me tired before I have even done anything. Again, sadly, I find, this means that I see less people because I cannot make the effort to be sociable. It can be lonely. It is also frustrating.

I had planned to write this blog eight days ago, but My Myeloma had other plans. To be more specific, my side effects had other plans. I am just coming out from my monthly steroid crash, which last week proved to be the worst yet. I can say, hands down, that I have felt the worst I have felt since the autumn. Maybe since I was in hospital. The side effects will get worse as you go through your treatment. It’s been a delight. I do not want to dwell on it, but in short, I had to stay at Mamma Jones’ house because I was incapable of looking after myself. I even tried to postpone my treatment, but I had no luck there. As many people know, I am glass half full, so I just saw it as training for my transplant. I definitely did not cry a lot.

Here is an aside for you. I realised that a sign that things were improving was when I put a bra on. The support meant that I was planning to not spend the entire day horizontally. Also, wearing something that did not have an elastic acted waist. Needless to say, at its worst, I looked H.O.T. Hot.

So, there it is. The reason I have not been blogging or maintaining as much contact as I would like. Tiredness. It really is not fair. It sucks all the funny out of my mind and I am not used to that. I need to laugh.

As with everything, I am just going to plough on through and hope that I can get to the end of this cycle in one piece, without plunging into a cesspit of depression. In order to ensure that the latter does not happen, I will keep blogging. Self preservation and all that. Plus, some really exciting shit is about to happen.

EJB x

P.S. I thank you for your concern. It warmed my womb.

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