Tag Archives: hope

Allo Allo!

Hello there, before I get things going I think we should all stop and appreciate the pun that forms the title of this blog. I am saying ‘hello’ because I have been absent from my blog of late and I am saying ‘Allo’ because I am writing to tell you all about the allogenic transplant I am about to have. Get it? If you were not a fan of a 1980s sitcom, maybe you will not have understood it immediately, but as I have now explained it to you, a pause for you to guffaw is warranted. 

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Right then, here it goes. 

Tomorrow, two years minus one day after my first stem cell transplant and 1063 days after I was diagnosed with the glory that is Multiple Myeloma, I will start treatment for my donor transplant. One could argue that I started treatment last July for this transplant, or, that all the other treatments I have had until this point have led to this transplant, but in the interest of not over exaggerating the sitution, tomorrow the SCT treatment really starts a proper.

It has taken an age to get here, and yet, once again, it all feels like it is coming at me too thick and too fast. I have spent the last few weeks wishing I had more time to enjoy myself post April’s auto, wishing I did not have to waste my limited time and energy sorting negative things out like money and my gas bill. I also feel under prepared in almost every sense possible. The impatient part of me however, which I should add, is My Ruler, just wants to get it out of the way. I have heard all the things that could happen and could go wrong, that I  just want to see what is going to happen and what is going to go wrong.  I want to be able to tell somebody if I’ll be free in a month’s time. I would really like to know how much energy I will have in October for the London Film Festival. I want to see if I really have wasted my last few weeks of freedom fretting over my future instead of seeing my friends and visiting my nearest multiplex. I want to see if I am strong and if I will be lucky enough to to experience weight loss. Most of all, I want to see if the transplant is going to work.

I really want it to work.

I will not know the answer to any of these questions until the treatment starts. It’s not only me who does not know, the Medically Trained People don’t know either. 

Last week, I was informed on two occasions that I am currently in remission. I didn’t believe it. On the second occasion, I was told that I was in complete remission and I was the healthiest I have been since all this started. It made the dire biopsy I had the previous week and discovering that I did not secure the lid on my 24 hour urine sample all worth it. It was news that once upon a time, would face me screaming from the roof tops. For now, it is news that bodes well going forward, only because I am exactly where the seven cycles of treatment and autograft intended me to be. It is exactly where I wanted to be. 

At the very least, it proves that my body is ready to fight the next fight, even if my mind is lagging behind. 

Some people may question the point of Transplant Number 2 when I have already achieved remission. If the last 1062 days have taught me anything, My Myeloma is a stubborn little bugger and any remission I have without the transplant will not last long. I remember June 2014 well. It’s a fact of my life. No transplant, no chance of freedom.

I’m backed into a corner with my treatment. My only true option is the transplant and I know this. Despite this, a question that has been plaguing me over the last few weeks, is that even if I do manage to get a long remission with Transplant Number 2, has the damage already been done? Myeloma came along and dropped a massive bomb into my life and there are times when I feel like I am frantically grabbing at the remaining pieces and failing to retrieve them. What sort of life will I awake to in 5-6 months time? An uncertain one. I have not been able to fully celebrate my current medical position because I have bogged myself down, with sleepless nights with these questions about my future. People tell me to focus on my health and worry about the later, well, later. That is easier said than done, especially when it is me who is staring into an abyss. Sure, my health is the most important thing, but what is health without the means to have a life? 

I know that I’ll think about the above more than once as I go forward, I may even take it out on others.  I also know that tomorrow when I wake up, my job is going to be getting through the transplant. My job is going to be getting myself out of bed everyday to get to the hospital for treatment. My job is going to be looking after my body, monitoring it and doing everything I can to ensure Big Sister’s cells do what we all want them to do.

I first heard of this procedure on 20 August 2012. At the time, I was told that there was a high chance of dying from it, there was a small chance that it would cure me and it was a rare procedure to undertake. I disregarded it. It scared me, it still does. I have had many a conversation about it since and all I know now is that I am ready to take the risk. I would be ready even if the risks were as high as first told. The prospect of being able to have a few years (conservative estimate) without treatment makes my mouth water. I’m blowing bubbles with my metaphorical saliva, I’m that ready for it. 

I have to face it, my life is not what it once was, but that is a fact that will not change by not having the transplant. In all probability, my life would be worse. Like I said, that damage has been done. Taking a risk with Transplant Number 2, the cost of doing, knowing how physically and mentally difficult it is going to be for me and those around me, has to be worth it. It has to be worth it. 

I’m in this for the long haul. 

So, tomorrow morning, I will go to St Bart’s where they will put a tube in my arm that will stay for much longer than I would like. I will have the first of five doses of chemotherapy and one week from today, I will have a bone marrow transplant. 

It’s the end of this blog, but, what it is the beginning of, time will only tell.

EJB x

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My Chi

I am not a spiritual person. I am not actually sure what a ‘spiritual person’ is, but I would bet EMan on the fact that I am not of that ilk. I am not a religious person either. When it comes to believing in something that I cannot see, experience or evidence, I struggle. And by struggle, I mean I look constipated when I think about it. I really have tried several times in my lifetime. Meditation for example, looks so much fun. I genuinely believe that my life would improve if I managed to get a bit of zen and, you know, allowed myself to believe in its existence. As somebody with respect for others and their beliefs and all the jazz that makes me a perfect, humane person, I am most perplexed that my belief in existence is still so black and white. Black and white and westernised, just with the occasional massage or reiki session.

It is rare these days, that when in comes to the topic of cancer, for me to experience something new or be surprised by it. Last week, I managed to be surprised. As somebody on the minimum wage, I found myself in a taxi, which I hailed with my stick outside the cancer centre, with just myself and a devout taxi driver for company. These facts are important, because they explain how we got onto the subject of the subject we we talking about. My taxi driver introduced me to something that I had not considered at all since my diagnosis, and that something, was called ‘healing’. Not sexual healing, even I could do with a bit of that right now, he was selling, spiritual healing.

On the face of it, simple exercises designed to help one relax and breathe correctly is a beneficial thing. Positive thinking is also something I could take a dose of. This, so the taxi driver told me, is what Qigong is all about. Well, actually, it is about an invisible energy, chi, and the cultivation of it to improve ones life force, according to the worldwide web. Great I thought, I can get me some of that, it sounded like a less energetic form of Zumba. And then, he went on. And on. Traffic was heavy, so it went on some more. Qigong, he said, could cure cancer. Not medicine, Qigong.

In fact he said, the exercises are preventative and if I had been doing them already, I would not have myeloma now. Shame that. It’s not too late, he said, I could have I individual healing sessions with his master. I looked at their website and these sessions come with a 85% success rate, with a minimum of four sessions depending on the illness, at a cost of Β£300 per session. The taxi driver rightly pointed out though, that what is Β£300 when it can save your life? Indeed.

If only… I am stuck between thinking that this exchange is deplorable and insulting on the one hand, and thinking that if it gives some people hope, then what harm can be done, on the other. Personally, I know where I stand, but I am yet to reach the point where such an option would seem appealing. It appeals to me about as much as a visit to Lourdes does. Actually, at least the latter would be a holiday.

I can sit on my sofa and think that all the above is ludicrous. I can continue to have faith in western medicine, I like that it does not offer me the universe and it does not tell me that I am wrong. I hope that in the long, long, term when my end is near, that I do not wonder whether I should have explored the spiritual or religious path, rather than ridicule them.

I do not know why the thought it is making me angry.

This is enough, right?

EJB x

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The Good Fight

A wise person once said to me that it would take time to recover after my transplant, both physically and emotionally. The person who said this is far more pragmatic and sensible than I, and added that I may feel different after my stem cells had returned to my body. Clearly, this was a conversation that was had before my transplant. Clearly, she was correct. I do feel different and I am not talking about my back.

A transplant is a transplant is a transplant. Most of the physical side effects can be predicted and there is a desired outcome. The Medically Trained People expect certain things to happen, I know that because they told me roughly what was going to happen at various stages along the way. Repeatedly. In addition to that, I read literature from various charities and collected anecdotes from people whether I wanted them or not. The emotional toll of what was going to happen was rarely discussed.

I was excited about my transplant because it signalled a possible end, but now, in limbo land, I feel empty. I’ve been running so fast for a year, working towards something, and now, I have done everything I need to do, all I have is waiting. It is an ever so subtle difference, that at times, I feel only I get. I remember many months ago, somebody who had a transplant telling me about their post-transplant depression, and I did not understand why they would be depressed. Everybody’s cancer is their own and I understand it now.

I have spent seven weeks beating myself up about this. I am stoic. I have reached this point in my journey with my head mostly held high and my glass half full. I am supposed to be a motivator. I am supposed to smile and let everybody looking at me know I am okay. I should not feel like this. This, by the way, encompasses a lot and with this, I feel like I am stuck on repeat. So, do yourself a favour and stop reading now or grab a tissue. It is uncouth to blow your nose on your top; I am learning that daily.

In the first few days in hospital, when I was still excreting fluids from my bum hole on the hour, I felt like I had lost my ability to reason and to problem solve. Now, with the weeks gone by, I know I have. Simple things feel difficult and by simple, I mean simple. Deciding what to have for dinner is no walk in the park, it is a headache. So imagine how I feel when it came to organising getting a new bed and wardrobe (I haven’t done it) and deciding what day I was going to return to London. Do not even get me started on my financial issues. I feel like Podd.

I have also discovered that my lack of reason, almost always means that I cannot stop myself from blurting out my thoughts and feelings. I do not need to paint a picture of this, for I sound like a whining arse wipe (which makes me feel worse by the way), but I am going to ram it down your throats anyway… If I feel sad, upset or angry, I am going to let it out. All my sense tells me not to, but I cannot stop myself, especially if we are close. As Mamma Jones explained to me yesterday, not everybody is her or Big Sister, and are programmed to take it. Last Sunday, in the middle of my worst breakdown yet, I believe I said that my life might nothing, none of my friends cared about me and I wanted to die, which led Big Sister to tell me to ‘get a grip’. I thought that was mean. That is how I felt in that moment. My response was something along the lines of saying that people do not understand what is going on inside my head. If I were reading this about somebody else, I would tell me to get a grip too. It does not feel up to me. Let us not forget that I am also going through the menopause, albeit real or fake.

Don’t get me wrong, sometimes, I am still a hoot, but my wit seems to be fighting an uphill battle for attention.

My excitement pre transplant, evidently, has diminished, it is not completely gone, I am a fighter after all, but it has gone right down there with my bank balance. Others are excited about the future and I get pep talks about how things will improve. The truth is with the transplant is that sort of talk and expectation, that talk about the improvements to come, anger me now and make me feel frustrated. Especially when the pom-poms are coming from secondary experience. Personally, I can barely think, let alone talk about what is going to happen to me in October, November, December, or how much I want to get back to normal, or what getting back to normal means to me, without crying. I cannot finish those sentences. That is no exaggeration.

On a number of occasions since I came out of hospital, people have asked me those very questions (what happens next, what are you planning, do you know when you will return to work, blah, blah, spew) and told me what I have to look forward to and every time, unless it is me instigating it, I feel like somebody has stabbed me in the stomach and then stuck their thumb in the wound they created. The thumb makes me cry. My voice breaks, and I have to use all my might to suck the tears back up again. In the last year, I have become very good at this, sucking the tears back up again, but in my world post transplant, it is much, much harder to do. The tears just come or I sound like a man. On one particular occasion, I was on the phone to a senior work person, but fortunately, the senior work person was oblivious to what was going on on the other end of the phone. Sometimes, there are reasons to be thankful for the temperamental mobile phone coverage in the fens. It was my favourite instance, because I would never, ever allow somebody of their kind, to witness that type of weakness.

The future everybody talks about so eagerly, scares me. I do not want to upset them. On the few times I have felt strong enough to let that excitement in, I plan in my head. I plan meals, cinema, theatre and holidays and I come across other hurdles and disappointment. I am not clear if they are actual hurdles, but my lack of reason makes mountains out of molehills. It is a prison. When my post transplant world comes, when I am in it because right now is not the world I envisaged, I want trumpets, bunting and kept promises. Right now, I just want support, understanding and reassurance.

I know that my up current struggles are not helped by my isolation. Since I was discharged from hospital, prior to Sunday afternoon when I attended a two year old’s birthday party, I had conversations in person or on the phone with just twelve adults, about half of these were not myeloma related. It would be fair to say that whilst I was in hospital, much of my conversations we also myeloma related, nearly all of them in fact. My transplant seems to have defined me more than my other treatment to date. I am more than my transplant and My Myeloma, and I deserve to be spoken to as such, otherwise, I end up having the same conversation again and again, just with different people. In terms of contact, what I mean is text message. Rightly or wrongly, I feel let down.

Based on all this, in terms of the effect on me, all I can say is, do the maths. It’s Key Stage 3 sort of stuff. If you cannot do the maths, see the bite size example below:

Isolation + boredom = insecurity + paranoia = tears + sadness

β˜”β˜”β˜”β˜”β˜”β˜”β˜”β˜”β˜”β˜”β˜”

I am not embellishing anything or seeking your pity. I want understanding. The thoughts I mention really have gone around and around my head and I have been taking this trip for weeks. Not every day mind, I do get the occasional rest day. In the last three weeks I have made several attempts to write this blog. I have questioned what has happened to me, what is happening to me and my future. I have played out the various scenarios in my head. I have been up and I have been down. There is however, only one time I have been absolutely certain. Somebody, who was recently diagnosed with the wonder that is myeloma commented on my blog and said they did not think they would take the medication to treat not cure it. The comments saddened me, but they also made me realise something about me, that in spite of everything I have said above and all the other side effects, I would never not fight this. Even if I am have no money, my support network get sick of me, I cannot shift the weight and I remain bald forever, I would continue fighting. The realisation was a relief, because on the dark times, I thought I had lost sight of it.

This period, is just part of the battle after all?

Anyway, I can still laugh at farts and stuff so I am bound to be okay.

EJB x

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A Month’s Supply

I am used to shoving drugs down my gob. Prior to my diagnosis, I was rather terrible at it, which the multi-vitamin tablets with a sell by date of March 2010, I found in my drawer would testify. I am now pretty good at remembering. I may have forgotten one or two doses after PADIMAC ended, but on reviewing the bag of drugs I was given yesterday for VTD, forgetting is not going to be possible. There are a lot of drugs and I fear I am going to have to be stringent with the timetable. I hate a timetable. It is day two and I am already behind schedule with the steroids. I would have liked to have taken them three hours ago. I’ll pay for that tonight.

My name is Emma Jane Jones and I am a drugs fiend. Apparently.

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The above is my month’s supply of drugs. Well, 28 days to be precise. The pile contains all my VTD meds bar the Velcade, which I get to go to the clinic for once a week. The bag itself contains 502 pills and 20 pre-made injections. I also have a further drug left over from PADIMAC, which I also have to take three times a week.

I just did a quick calculation in my head and I do not have enough syringes for 28 days. I will need to sort that. For this incredibly interesting exercise, that though is by the by. Honestly, this blog is so interesting, I am setting you up for a day of fun.

Now you have been warned, I am imagining that my daily drug routine is going to look something like this. Brace yourself.

I wake up, stretch, look at my phone and take one Lansoprazole to protect my stomach with a bit of water. Wait for 30 minutes to an hour before I take two 10mg and a 5mg tablets of MST (morphine), one Aciclovir, which I believe helps to fight of infection and a Allopurinal tablet, which even after a Google search, I do not have the slightest clue what it is for. I know I was told what it’s use was in September. I have since forgotten because the drugs made me, and I have thrown away the piece of paper telling me its purpose in my life.

On Velcade Days and the day after, I also need to take 10 2mg Dexamethasone tablets (steroids, sorry FUCKING STEROIDS!!!). I like to take these as early as possible, so they do not keep me awake. History tells me that they may well still keep me awake.

At some point in the afternoon, I treat myself to another Aciclovir tablet. Three times a week, on a Monday, Wednesday and Friday, this will be accompanied by a large glass of water and a Co-Trimoxazole tablet to prevent chest infections.

Around 19:00hrs, I will gently caress the skin around my stomach with an anti-septic wipe before I stab the area with a blood thinner known as Fragmin. This is required because the Thalidomide can cause blood clotting as well as birth defects in babies. You have been warned.

At Bedtime Garden, I then get to finish my day with another Aciclovir, one 30mg and one 5mg tablet of MST and two Thalidomide tablets. Apparently, it is best to take the latter at nighttime because it makes you sleepy. I can confirm that I had no issues with sleep last night, but it was only day one. I will assess over the next week when it is best for me to take this drug. Interesting huh?

So, the survey says that on a good day I am prescribed 12 tablets and an injection. On a Monday and Wednesday this increases by one to 13. On a Friday, which is currently my Velcade Day, I take 23 and the injection. On a Saturday, I take 22 pills.

It’s nothing really is it?

Well, I also have in my Drug Drawer some Domperidome, an anti sickness pill, that I can take as and when required and the good old faithful Paracetamol.

Remember, you British Tax Payers are paying for all of this and for that I thank you.

Must dash, my stomach is now lined with a fibrous milkshake, so I must take the ‘roids’.

Boom.

EJB x

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