Category Archives: Life and death

Hello relapse, goodbye remission

The inevitable has happened, I am relapsing.  I knew it would happen but had hoped it wouldnt be so soon.  After I posted last month the good news that my hip pain wasn’t caused by myeloma (see my last post The Nightmare before Christmas) the bad news this month was that it is coming back. I wish my life wasn’t quite such a rollercoaster. I won’t bore you with the technical details, suffice to say that I have had 3 successive rises in my kappa light chains which have doubled each time and are now considerably out of normal range but not perhaps high enough to start treatment yet, all else being well. And that is the irony, I am feeling really well.

Being so well and strong this past year I had dared to hope for a long remission, maybe 5 years plus, I had already booked three holidays for this year (unusually for me as I always used to leave this to the last minute), started training for a triathlon in June, had a work plan for the future and hopes of perhaps finding a partner too, thinking that my life would be long and healthy enough for all that to happen. I was almost complacent about my remission.  I thought I was invincible. How the mighty have fallen! Now the future seems as bleak as it did when I was diagnosed in December 2010.

I have talked the talk in my blog about living in the moment and banged on about the merits of living day to day but now I can only see a gloomy future, a life on treatment until the options run out and myeloma becomes resistant to the drugs. I am categorising myself as one of the unlucky ones, reading grim statistics about survival rates after relapse. I am unlikely to get a donor match to have an allogeneic transplant, see more on this in a previous post (Clinic appointment on Friday the 13th )  which relates in part to the Anthony Nolan Trust and my search for a donor last time around.

And oddly enough I feel anger too, not an emotion I am usually inclined to, being of a fairly calm and cool disposition. I feel non directed anger about how my life has panned out, , the unfairness of it all, anger with myself for not always making the right choices, anger with the NHS for not funding Revlimid maintenance therapy which might have doubled my remission, anger with my haematology medical team for not supporting me enough and angry that I have to live like this, with uncertainty, illness and death.

I also confess to feeling envy, yes envy of my fit and healthy peers planning their gentle third age, envy of people who are just getting on with their lives, envy of people out walking their dog in the park, happy families, joggers, couch potatoes…. the list is endless, in other words, NORMAL PEOPLE who don’t have to live with a life limiting illness. I’m not saying that they are “normal” or that I cant do the things that normal people do, (except plan for old age and worry about pensions which is actually quite liberating!), I’m saying that I always carry with me that consciousness of my own mortality, it is ever present, even permeating my unconscious mind now (in a lot of my dreams I have cancer). I no longer have the luxury of being able to take things for granted even though that is not necessarily a good way to live, just now and then it would be nice.

I even feel jealous of fellow myeloma sufferers who are enjoying longer remissions than I had. How awful is that? I mean I wish them well and a very long remission of course but I just wish I was one of them.

I have told a few friends and family, they don’t know what to say.  A common response is can you do anything to stop it coming back…. what like eating more fruit and vegetables, drinking green tea or taking a vitamin supplement??? Are they kidding, it’s cancer for fucks sake! It comes back of its own accord regardless of my lifestyle choices. If anything I should have plenty of brownie points stored up for the active and healthy lifestyle (apart from the odd cake and mojito now and again!) I have led in remission and prior to diagnosis. It makes not one jot of difference with myeloma. I could have slobbed out, smoked, drank and eaten fry ups everyday and still be where I am now. In fact it strikes me from the various forums I am on just how many people prior to diagnosis seem to be fit, health conscious and active people. As one friend said to me when I was diagnosed, we all try to live a healthy lifestyle, don’t smoke or drink too much and the shit happens anyway so why bother!

That brings me on to the subject of fighting talk, the people who would say ok its happened but you’re a fighter right? You’re going to fight this, beat it and win, yes? Well actually I am not going into battle with abnormal plasma cells in my bone marrow, I’m not going to obliterate my excess of Kappa Light chains (sounds like Star Wars!). When the time comes for treatment again, the chemotherapy will create a chemical reaction that I don’t understand (and that my doctors understand hopefully some more of than I do, that being their job) that may help on a temporary basis to stop the abnormal cells from producing, that’s it, that’s all there is to it. It is not a contest, a battle of endurance like Andy Murray v Roger Federer, smashing the cancer like a ball over the net, giving it my all. Cancer cells exist in my body whether I fight them or not. As a fellow myeloma blogger put it very well in his recent excellent post on the certainty of uncertainty…

“Disease biology is destiny. I am no match for the pathology of cancer. Nor should I expect to be. It is going to do what it is going to do.”

(pmdello- goodblood,badblood)

http://goodbloodbadblood.wordpress.com/2013/01/21/the-certainty-of-uncertainty/

I cant beat my abnormal cells into submission and dont want to feel beaten by cancer now it is returning, like it is my fault for not putting up a good fight or not living the right way or come to think of it, another bugbear of mine, not being POSITIVE enough.

I have been told “you have got to stay positive”. Why, because that makes no difference either. I remember not long after diagnosis when I was in a very big black hole, I read a cancer supplement in the Times that had an article on whether there is a link between positive thinking and survival prospects in cancer patients. I didn’t keep the supplement unfortunately and now I cant find the link but there are plenty of studies out there which show that being positive has no effect on cancer and neither did being stressed or depressed mean a worse outcome. I was immensely relieved to read that at the time and still find it reassuring. Whilst being positive may make it easier to deal with the diagnosis and the treatment and certainly makes life easier for your medical team than a tearful and anxious patient as I was, it doesn’t affect the outcome.

For anyone interested in the pitfalls and politics of positive thinking, I recommend a book called Smile or Die by Barbara Ehrenreich, an American political writer and activist.

For Amber @ The Daily Mail smile-or-die

Cancer is not a problem or an illness – it’s a gift. Or so Barbara Ehrenreich was told repeatedly after her diagnosis. But the positive thinkers are wrong, she says: sugar-coating illnesses can exact a dreadful cost. She was told when diagnosed with breast cancer that having a positive attitude would help. That was like waving a red flag to a bull and she and others have thankfully debunked the myth of positive thinking.

Thank god I don’t have feel positive and maintain an upbeat demeanour or practice daily visualisation exercises of my good cells killing my bad nasty cells!

I am sorry if I have offended anyone with my anti positive talk, if it works for you then that is great. I also apologise for my rant. I won’t always feel this way, I just need time to get my head round it and to adjust. In fact I am already feeling more accepting and fatalistic. As my favourite fictional mobster and anti hero Tony Soprano often said…, rolling his eyes and shrugging his shoulders.

Whattaya gonna do?
Tony_soprano.jpg-3269<

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Filed under Cancer, Health, Life and death, Multiple Myeloma, Myeloma, Remission, Stem cell transplant

In a clod!

I havent posted for a while, not had much to say (unusually for me), life goes on with its usual ups and downs, but a little more down than up for me at the moment. My haematology consultant once remarked to me that I seemed to be stuck in a clod when I was going through a tough time with my treatment. It was not a term I was familiar with for describing depression or anxiety or whatever I was feeling at the time and I put it down to being lost in translation as she is originally from Greece and brought up in Germany. However when I looked it up in the dictionary and thought about it more it made perfect sense:-

clod

n. (kld)

1. A lump or chunk, especially of earth or clay.

2. Earth or soil.

3. A dull, stupid person
I hope she did not mean I was a clod as in a dull stupid person definition of clod but now I do get that description of being stuck in a clod, like a big lump of claggy heavy soil which is weighing you down and feels impossible to get out of. Actually I dont quite feel as immersed in a clod as I have been but lets say I am finding it a bit difficult to get out of a muddy field at the moment!
Part of this feeling has to do with hearing of the death of a myeloma friend recently as his wife posted on the Myeloma UK discussion forum to let everyone know. He was younger than me, only 41 and his user name on the forum was Outdoors Paul, for reason that he loved the outdoors and walking, living in Todmorden, Lancashire, he lived on the doorstep of the Pennines. The Pennine way to Stoodley Pike above Todmorden below is a walk that he probably did many times and I have done myself several times. It is also often a very muddy walk!
He died of an infection shortly after being admitted to hospital with a high temperature about two months after his autologous stem cell transplant (using his own stem cells like me). Apparently his aggressive form of myeloma had come back very quickly and he didnt respond to antibiotics and there was no time to start treatment again. He had posted a few weeks beforehand about his recovery from the transplant, that he was doing well and had been for a few miles walk with his dog up the hills. On the day of his admission he had been for a 5 mile walk in the morning. I was pleased to hear that.

He was diagnosed a few months after me and came on the forum with a very positive attitude, he used one word to describe himself in his profile….

optimist!

The exclamation mark was his annotation not mine.

He had to endure an array of harsh combinations of treatment because his myeloma was quite aggressive but eventually got to the point of stem cell transplant and was being lined up for a tandem donor transplant within 6 months of his auto (again like me but they couldnt find a donor for me). Despite what he was going through, his posts and replies to others were always so positive and upbeat expressing a gritty determination to get through whatever was being thrown at him.

As I certainly didnt feel that way during my treatment, I found his positivity and optimism difficult to relate to but I know that everyone deals with it differently.

We never met, the plan was that we may along with another myeloma friend attend a Myeloma UK info day in Birmingham in late October and drive there together but he died before then .

There have been several other youngish people I know of with Myeloma died over the last year, too many, always distressing and sad to hear about but I have found Paul’s death particurlarly hard to deal with. I think because it was so unexpected as he was recovering from his stem cell transplant and was meant to be in remission but his myeloma must have come back so quickly his body didnt have a chance to fight it.

It brings home that this could have happened to me, could happen to me anytime. I go for 3 monthly blood tests to test for the presence of disease but it is possible that the disease can come back so very quickly and aggressively in between those tests, perhaps less likely than Paul as he did have quite aggressive myeloma but nevertheless a possibility. Then I read the good stuff about myeloma becoming so treatable with the new drugs that are coming on to the market that it will become something you live with and manage as a chronic illness and I get confused. What is it going to be for me? What hand have I been dealt? Am I going to get 10 years remission or am I going to relapse in the next few months? Why him and others, when me and others, so many questions! That is the clod I am in. I know that these questions are unanswerable and more fundamentally I know that they are the wrong questions and will not assist me in getting out of the clod! I like the question asked by Winnie the Pooh in the quote below

Profile photo

What day is it?”
It’s today,” squeaked Piglet.
My favorite day,” said Pooh.”
― A.A. Milne
and on a more grown up level, this one

The question is not whether we will die, but how we will live.

Joan Borysenko

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Filed under Cancer, Health, Life and death, Multiple Myeloma, Myeloma, Stem cell transplant