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.

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?
<

Advertisement

The Great Manchester 10k Run

I wanted to post about doing the Manchester 10k run on 20th May before now but a holiday to the Italian Lakes and Switzerland (yes another!) got in the way.

Well I did it, it was bloody hard going though and I felt a tremendous sense of achievement – I wrote an account for publication on the Myeloma UK website/newsletter which will no doubt be heavily edited but what follows is what I wrote

The Bupa Great Manchester 10k Run 2012

I first did the Great Manchester 10k Run in 2009 when I was fit and well. On that occasion I raised money for Mind, a mental health charity, after a close friend of mine took her own life after struggling with mental illness. I found that the training in the wind and rain helped me come to terms with my friend’s death and I ran it in 68 minutes and really enjoyed the day and the physical challenge. I decided to enter again in 2010 but a combination of an injury and lack of motivation caused me to pull out and defer my place to 2011.

However in December 2010 I got diagnosed with multiple myeloma following emergency admission into hospital for kidney failure. Prior to that I had been feeling tired and had achey legs but my kidneys had deteriorated within a space of a week to 10 to 15% of normal function. I started treatment on 29 December 2010 on cyclosphamide, dexamethasone and thalidomide initially as part of the Myeloma X1 trial. After 1.5 cycles I had to stop taking thalidomide and come off the trial due to allergic reactions and too many side effects. I then started PAD and had two cycles of that which brought me into remission followed by a stem cell transplant on 1 September 2011.

The May 2011 10k had passed me by as I was in the midst of treatment and in no fit state to train for a run either mentally or physically but I did manage to celebrate my 50th birthday also in May.

I recovered fairly quickly after my stem cell transplant with about 14 days in hospital and then about 6 weeks of resting and walking a little more each day. A couple of months later I was sent the details of the Great Manchester run in May 2012 and thought, what the heck, I am going to enter this so I registered. My bone marrow biopsy after 3 months showed less than 5% abnormal cells and I was told I was in very good partial remission. I tramped around London, Dublin, Alicante on weekend breaks and got fitter and more active.

Training in earnest didnt really start till February 2012. I followed the same training plan as I did in 2009 starting with 20 minutes walk/run around 3 times a week and building up a little each week. I did find it a struggle at times and initially would come in from the run, go upstairs to shower and change and then find myself lying down for an hour as I felt so tired! But over the next couple of months my fitness levels improved and I didnt feel so tired afterwards.

After I was diagnosed with myeloma and during treatment which was tough going I got quite depressed and nearly threw out all my sports gear. Prior to being diagnosed I loved playing tennis, squash and did the odd run now and then. I thought that I would never do these things again even in remission as  these are high impact activities and as myeloma weakens the bones, I didnt think that it would  be possible. Instead I considered walking and more gentle activities such as yoga and tai chi. However my consultant told me that I could do what I liked providing I build up gently as my bones were as strong as anybody elses and my skeletal xrays had been normal.

As the day got nearer and I created my Justgiving page, received my Myeloma UK vest and fundraising pack and people started to sponsor me I realised it was actually going to happen and despite people telling me to take it easy my naturally competitive self wanted to do the best I could but I did find the training hard going. The final practice run was the Sunday before when I did 45 minutes but my pace was slow and laboured. I wondered whether I was taking on too much but was determined to do it even if I had to crawl round.

My parents were coming for the weekend to cheer me on and had also raised quite alot of money from their friends so the pressure was on! My wave started at 12.10 and as I walked through the crowds with my parents to find a suitable spot for them to cheer me on and then walked alone to the starting point and lined up with the other runners to warm up and then listen to an opera singer whose name I have forgotten singing You Raise Me Up, I felt very emotional thinking about what I had been through, what I was about to do and the fact that I never thought I would be able to do this again. I felt happy to be there and enjoyed and savoured the atmosphere of participating in a run involving 40,000 runners all running for charities that meant something to them.

Then the gun sounded and Bobby Charlton and other celebs waved us on from the podium and as I ran down Chepstow St I managed a smile and a wave to my parents and then began the hard slog round the course. When I got to the 4k mark I was surprised I had only done 4k and there was so much more to go but kept going. I got some advice from my boss last time I did it which was never stop and walk otherwise you wont be able to get going again. I stuck to that in 2009 and stuck to it in 2012 even though my jog was at a snails pace at times, it was a jog and not a walk. I kept going past the Old Trafford Football ground, home of my beloved football team and back down Chester Rd bolstered by the support from the crowd. I had my name above my race number and it was really good to hear people shouting come on Wendy!

On approaching the finish line back in the City centre on Deansgate, the crowds got denser and noisier which spurred me on and I managed a slight increase in pace and to feebly raise my arms as I got to the finish line!  Participants are told to keep moving so you dont clog up the runners coming in behind you and then I handed in the microchip which I had attached to one of my trainers so that my time could be recorded and then texted to me later.

I was delighted and relieved to have completed the run but my next task was finding my parents who werent at our agreed meeting place. I had given them my phone, purse and clothes to look after so had no means of contacting them, no money and no clothes to change into!

I had also arranged to meet some other runners who were raising money for Myeloma UK at a pub later.  It was good to see their Myeloma UK orange running vests as I hadnt seen anyone with a Myeloma UK vest along the way. Eventually I was reunited with my parents at Jamie Oliver’s restaurant for lunch and a celebratory drink after I had drank plenty of water of course. I dont know who was more exhausted, them from wandering around Manchester or me. When I got my phone back I found out from a text from BUPA that I had completed the run in 68 minutes, exactly the same time as in 2009. I was stunned and delighted as I didnt think that my pace had been as fast as 2009 and it was such a struggle getting round but it must have been all in my head!

By the time we got home we were all shattered and an early night was in order. Surprisingly although I was a little stiff I was able to walk the next day and set about the task of gathering in the sponsorship money. I was overwhelmed by the support I got from family and friends and their generosity. I was chuffed by my time and personal achievement and have raised £1000 for Myeloma UK. Would I do it again next year? Definitely!

Ps It is not too late to make a donation to Myeloma UK, check out my page at www.justgiving.com/wendyduffield