Monthly Archives: August 2014

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.

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Decorum

There were two events yesterday, two and a half really, which proved to me, if I needed anymore proof, that I now have absolutely no decorum whatsoever. The subject in question, was of course, my faeces or my lack there of.

Everybody requires a little bit of context and this is mine. I am currently on six tablets of docusate sodium a day plus two senna pills before I go to bed, and still, despite this hefty dose of laxatives, going to the toilet continues to be the bane of my daily existence. In case you were wondering, myeloma is the bane of my world. At least once daily, I also have a portion of linseed, which I believe gives the medicine a healthy, natural helping hand. Linseed also means I occasionally have to visit a Holland and Barrett, thus allowing me to feel superior to the unhealthy masses, that is, until I look in a mirror.

I have long been of the opinion and voiced it several times, that constipation is one of the biggest, unspoken downsides of my medical predicament. I had an appointment with a Senior Medically Trained Person recently, who I had not met before, but Mamma Jones once saw on the television and I instantly took a liking to him when he asked me about the difficulty of my bowel movements.

In that appointment, he told me that one side effect of the radiotherapy would be a slightly jippy tummy. It was a statement that solidified my positive opinion of him. I have now had three sessions of radiotherapy and that particular side effect is yet to appear. I am forgiving him of that, if in a few weeks time, I am able to sit on the toilet without a fear of snapping my spine in three when the struggle ups it’s game.

That is the unsavoury background to my daily (if I am clutching the glass half full), trials and tribulations. I will indeed talk about them to anybody who is willing to listen. The only difference is, depending on the company, I might deepen the code of the subject in which I speak.

Yesterday then, I had a particularly traumatic morning. I had to be up and dressed by 10am, ahead of the Patient Transport Service collecting me for my two hospital appointments of the day, the first of which, was at midday. The PTS can pick me up anytime between 10:00hrs and my appointment time two hours later. As such, stage fright usually kicks in and I cannot pass what needs to be passed because I need a clear 30 minutes to do it. Unfortunately for me, the biological need kicked in around 11:15hrs, shortly after I discovered my transport was not in fact, picking me up at the agreed time. In a panic, I booked a taxi and then visited the room between my kitchen and my bedroom. It was an act that was indeed a mistake for there was not enough time for me to do what needed to be done.

This brings me to my first example. Mid act, I had to give in. As I uncomfortably made my way through my flat to the waiting taxi outside, I said something to Housemate that does not need to be repeated here, such was the level of my crudeness. All that needs to be said is that it Is a term usually reserved for the delivery room in a hospital.

It was a very uncomfortable taxi ride, during which, it became apparent to me that I was going to have to be late for my counselling appointment at midday. Not wanting to be rude, I thought it necessary upon my arrival at the Cancer Centre to inform the relevant people that I may be a little late to my appointment.

Most people would probably have asked the the lady on reception to inform my counsellor that I would be late and send my apologies. Not me. In my second example, the conversation went something like this:

“Hi, I have an appointment with Sxxxx at midday, but I am going to be late…. I have a problem. Not a bad problem you understand, but the one people get with their medication that they don’t really talk about… You know… Um, I just really have to go to the toilet and I’m really uncomfortable and it might take a while. Can you let her know? I’ll go down to her office when I am done.”

It was a conversation that was greeted by a knowing smile, and off I went. Fifteen minutes later, with a large smile on my face, I returned to the reception desk to see smiles all round. I then proceeded to discuss matters in more depth for five minutes more.

Later in the day, I received a text message from a dear friend of mine, who is also experiencing similar woes, and what followed was a lengthy, open discussion about my troubles of the day and the effectiveness of linseed. It was that conversation that confirmed what I have long known… Cancer causes constipation and I absolutely love shouting it from the rooftops.

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EJB x

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Belated Anniversary

I woke up on Monday morning to send my friend a text message to acknowledge that the 18 August was her birthday and that I had remembered that fact, and in doing so, I realised that I had forgotten that the day before marked the two year anniversary of me being told that I had multiple myeloma.

Everything about that Friday, two years and four days ago, is burned into my brain, for as overdramatic as it sounds, it is the day in which my life as I knew it, changed. Knowing what I know now about My Myeloma, very little about it surprises me. It surprised me on the 17 August 2012 and forgetting the anniversary of that Friday two years and four days ago did surprise me. It surprises me because it is indeed the date in which everything changed. It might not be something worthy of celebration, but it is something I thought I would always remember, stop and think about when the clock rolls over to 00:00hrs on the 17 August.

In my defence since that day, there are other days in which I feel My Myeloma more than others, and thus at these times I pretend I am a mirror and reflect. Such days tend to feature a ‘small’ amount of wallowing and they include my birthday, Christmas Day and the anniversary of my transplant. I also spent much of Sunday on motorways travelling back to London Town after a weekend away and most of my energy was spent willing myself not to be tired. The reality on Sunday was that after a lovely weekend away in North Devon, I was extremely tired.

Such was my fatigue on Sunday, that I fell asleep for the first time in a long time, wishing that I did not know what myeloma was, let alone have it. I wallowed, even though it was not for the reason I imagined. It’s not a thought I have very often, because it is one that wastes my energy and only succeeds in making me feel sorry for myself and jealous of everybody else in my life. That is something I have had to learn over the last two years. I have also learned the hard way that I cannot go away for a weekend and not suffer the consequences for a few days afterwards. Feeling uncontrollably tired has been the overwhelming theme of my week thus far; something too that I have become all to familiar with in the last two years.

In my two years, I have relapsed twice, I have had an operation, a stem cell transplant, radiotherapy, had two full rounds of treatment and started a third. Today I start another round of radiotherapy. And that is just the medicine. Two years is a long time in Myelomaville. In this time I feel like I have aged considerably, I know I am wiser, the list of what I care about and the weight I give to the things on that list has changed dramatically. The list is far longer and I feel and care far more than I did BC. I have lost and gained weight and all over body hair, and there is a small chance that I have lost an inch off of my height. In short, there are times when I feel like the person I was 735 days ago, is nothing like the person I am today.

Myeloma has forced me to grow up, despite it’s constant and sometimes successful attempts to infantise me. So many things in my life have stalled, and yet in the two years so many things have happened. The things that have happened, in fact, the majority of things that have happened l, are not what I wanted for myself. They have happened however and the only option I have is to learn how best to deal with them when they jump up and slap me in the face whilst kicking me in my stomach. I frequently get my methods for dealing with the lows wrong. As old and wise as I think I have become, there are still days when I royally mess things up. Crucially though, I still get up and try everyday and when things do go array, I am likely to admit that it has, in an undisclosed time in the future. I then try not to do it again.

I suspect the real reason I forgot about this anniversary is because the current battle is garnering all my attention and focus. I do not have the time to reflect on what could have been. I do, however occasionally need to remind myself of what I have achieved in the last two years. I may not need to know how many Velcade injections I have had, but I do need to know that I have the strength to battle what is coming next. And do you know what? I know I have the strength because on this anniversary, I can look back at what I have achieved so far and say without any shadow of a doubt, that I do have the strength. Myeloma is hard, it is all so very hard, another thing I have learnt in two years, but my stoicism is proving to be tougher. It is tough even when I am inexplicably tired and moping around my flat for days on end, experiencing the occasional bout if projectile vomiting.

I attempt to take the difficult days in my stride. In the two years, I think I have almost successfully done that. Everyday for me is a battle of varying proportions. There was a while there where I had the pleasure of a temporary ceasefire and the challenges changed, but right now, I am right back in the fight. This time around, as I fight, I have a huge advantage on my side. It is an advantage that is a far more worthy way of acknowledging this anniversary in question. I have the knowledge of two years on my side and I use that knowledge everyday and it is that, that helps me get out of bed. It is that, that makes me strong. In case you were wondering, I know I am strong because a good friend told me so last week.

The 17 August – I salute you.

EJB x

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Price Tag

True story, Cancer is a blood sucking and money grabbing parasite. It robs people of so much. Too much.

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As a cancer sufferer, I know the hidden costs of cancer and at this point in my story, my hidden costs pale in insignificance to what other people have spent and lost. In a game that ultimately hinges on life and death, any consideration to money seems tasteless. If you want to see a bright side, the fact that money or my lack there of, is occupying my thoughts at the moment shows that I have yet to be truly affected by the horrific costs that can come with cancer. In my present however, the financial worries that accompanies my relapse are costing me more than just my lifestyle, it’s threatening my independence.

Whether you have cancer or know somebody who has cancer, in the UK at least, cancer costs something, even if it is just something as uncouth as money. I am fortunate enough to live in a land where all my healthcare is paid for; I have expressed my sincere gratitude and relief about this before. I have also talked about how My Myeloma had made me a pauper. Never though, in my story thus far, has my money and my ability to earn it been as compromised as it has been since I relapsed. I am in dire straits and you don’t get money for nothing. Accept, that is exactly what I need, not that I would describe cancer as ‘nothing’.

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With the exception of my early months with myeloma and my stem cell transplant, I was able to work and have an income in some capacity since my diagnosis. In these early days of my relapse, the jury is still out as to whether I am able to work on my current treatment. Everybody is telling me that my current priority has to be my treatment, and thus, despite trying for the first few days, I have not worked since. Due to the sick leave I have already accumulated, this means one thing in terms of my finances, and that is nil pay. It is my reward for having cancer. I have been told that when I return to work, my financial situation cannot be a consideration. There is no way in which it cannot be a consideration, but I am not stupid enough for it to be the decision maker. Inevitably then, at least in the short term as I regain my strength, my cancer treatment will not be the only thing the taxpayer gives me.

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I have had a job since I was 11 years old and the thought of government handouts does not sit well with me. I actually feel quite guilty about the fact that the benefit system is the only option for me to maintain any level of independence. I was 28 years old when I was told that I had myeloma and although I had a pension plan, I did not think about life insurance or any of the other things one sees advertised on digital tv channels along with the cancer charity adverts. Some might say that if I am not working, I should live off my mother instead of the State. Unfortunately, whilst this might appease some of my guilt, it would require packing up and moving away from the life I have created for myself. My Myeloma has taken away my money, my ability to socialise and it may still take my job; I think if I reverted to my childhood it would tip me over the edge and I just would not want to fight anymore. My good days are few and when those days come, I want to be able to embrace them doing the things I enjoy. I would lose the strength to fight My Myeloma if I took away the tools that keep me sane and stopped doing the things that form part of my identity. When it comes to myeloma, I am also sinfully suspicious and I would class leaving London as a bad omen. I am not ready to give up yet and I will not take anybody telling me otherwise.

I have investigated the UK benefit system previously, I told you all about it and the endless amount of forms I faced post transplant. Fortunately, at that time, I was not in a position where I had to solely rely on state handouts and I only applied and was granted something called Personal Independence Payment, that would be a disability living allowance in old speak. Now however, I have to delve that little bit deeper. Macmillan were on hand to advise, and in the coming months I shall be in receipt of Statutory Sick Pay, a bargain at Β£88 a week. To subsidise that, I shall also be applying for a few other things once I have multiple copies of anything to have ever been printed with my name on. It’s going to be a tiring process and one that I wish I did not have to partake in, especially when I am on so many opiates. It makes it incredibly difficult to focus. The sad truth is, I need your money, I need it just as much as I need my medicine. If I have said it once, I’ll say it a thousand times, living costs money, even when you have cancer and if there was ever a time when living becomes essential, it is when you have cancer. At least if my treatment remains as a periodically debilitating as it is at the moment, living will cost me less money than it does when I am at my New Normal. Silver lining.

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The hidden cost covers more than money. Since my diagnosis, being able to work and to do something that is not about my illness has been my sanctuary. Working allowed me to have something independent from myeloma as well as permitting me to be financially independent from it. I may find in a month or two that I need to work, not for money but for my mental health. Myeloma does not define me, neither does my job, but taking the latter away just makes more time for the former. Not knowing when I will go back to work is disconcerting. On a practical level, I cannot be the most desirable employee in the land and at times, I do not know if this means I will ever be able to go back. One thing is for certain, my superstitions are too great for me to consider a future without work. I need hope and I need my life and working is part of that. Admitting defeat and surrendering before the battle is not a part of that.

As far as I am concerned, all of this is a temporary measure. I’m fighting for survival in more ways than one. It has to be temporary. I will not hear otherwise.

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In other news, thank goodness I can cook, otherwise eating thriftily would be as dull as what I am sure living thriftily will prove to be. Of course I am being sarcastic, nobody can put a price on the fun My Support Network offers.

EJB x

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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;

β€’ 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

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

β€’ 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

β€’ The shower, never underestimate the power of a clean peach

β€’ 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

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

β€’ Colin and Bruce.

β€’ Films from my childhood that have been seen a morbidly obese amount of times

β€’ A tidy and clean(ish) flat

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

β€’ In this heat, a fan permanently directed at the body

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

β€’ 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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The Regimen

When it comes to the hospital and my appointments at the hospital, I am a creature of habit. It’s comforting for me to know exactly what I am going to do when I get to the hospital, know exactly who I am going to see and where I am going to sit. UCH’s Haematology Department has long facilitated my need for routine. I come in, I bypass the accepted booking in procedures, I go to the fourth or second floor, via the lower ground floor and I am done. Along the way, I will come across several faces who have seen mine before and are kind to it. I am made to feel special and that my pals, is because I am.

Today at the Cancer Centre, otherwise known as my office, I was in a state of flux. My routine had been altered. I was not being seen by anybody on the second or fourth floor. I was forced, forced I tell you, to check in with all the other mortals on the ground floor on self service machine. On a machine! Instead of just disappearing to a place where people can identify my clinic by my face, I had to wait on the ground floor for my name to appear on multiple large tv screens. I think I have only done this once before. Not one to voluntarily fade into the background, I decided that the best way to wait for my non-Haematology appointment was to tell anybody who knows me that I did not know what I was doing. It was not a lie as such, because I did not quite know how the clinic works, but I will put my hands up and say that I was being a little needy.

I chose not to wait for my name to appear and instead asked a volunteer to inform me of the event, so that I could sit in the air conditioned abyss that is Macmillan Support. I did not ask just the one volunteer either, I asked at least three people to tell me when my name appeared in lights. I think, I was excited about the appointment ahead of me. As it turned out, the preparation I felt was necessary, was in fact, unnecessary. The appointment system at the centre, which I chose to never follow, is rather slick, and I was sent a text message informing me that I needed to visit the first floor.

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Technology is just a wonder

I will be honest, I did not like the first floor. The flooring was loud, and the other patients felt the need to monopolise the seats and bash me when they walked passed. It’s okay though, I gave them all the eye and took a photograph of the artwork. Also, and most crucially, the staff on the floor did not give me the recognition I usually attract. Again, with the special. I am special.

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Trust me, this was not age appropriate

Fortunately for me, when the time came for my actual appointment, a mere 30 minutes after the initial appointment time, I got that special treatment I demand and expect. The Medically Trained Person, who specialises in radiotherapy introduced himself and said that we had not met. I was unsure about this statement, but he confidently told me that if he had met me, he would have remembered. Obviously, this made sense to me and I took him at his word.

After five minutes, it was clear to me that stepping outside my myeloma comfort zone pays off sometimes. It has taken several weeks of talking to the People Trained in Myeloma to get a referral for radiotherapy. It has been a subject that has never been far from my mind since I heard the word ‘relapse’. Even today, I feared that the appointment was just a referral and I would be told that radiotherapy would not achieve anything. I just wanted a chance, something is better than nothing has been my motto. It looks like the Medically Trained People agreed, for my appointment was simply designed for me to sign a consent form. Radiotherapy is a go. I repeat, it is a go.

I have every hope that it will pay off, for it has been confirmed that in two-three weeks time I will be having five sessions of radiotherapy on my lumbar region. I simply cannot wait. I had radiotherapy on 22 October 2012, and I have not been bothered by my hip since. Sure, I’ll have to spend five days in the Radiotherapy Department, where if memory serves, one is spoken to with a constant head tilt, but if this means that my pain reduces by a fraction, it’ll be well worth it. In fact, I would go as far as to say that it would mean a great deal to me. If successful, it may even permit an uninterrupted night’s sleep. I am a simple girl with simple needs.

I have had radiotherapy before, but I do not feel the need then was a great as it is now. As a bonus, I was informed by the Medically Trained a Person that not only was he going to fix some of my damaged bones, a side effect of doing so may be loose stools. Score. πŸ’©

And now all I have to do is wait… Trust me, I will no doubt have a thing or two to say about having treatment in the big tower, where nobody knows my name, but if it means I can walk just that little bit more, then hell, let’s change up the routine. Just this once.

EJB x

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