Tag Archives: Health

Hello Relapse Goodbye Remission Part 2 The calm after the storm

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Since I last posted a month ago with the dramatic news of my relapse in a rather angry and stormy moment, I feel so much calmer about relapsing. The storm has passed, and in its wake is a sense of rebuilding and adaptation to my new situation. I have seemingly made the transition to my impending relapse with resigned acceptance pretty much as I said I would do in my last post.  I don’t feel angry with anyone or anything anymore. In fact I have bounced back fairly quickly. Having recovered from a lingering cold and cough, I feel very fit and well and even happy.  After the initial shock and despair I have felt a strange mixture of apprehension and excitement about this new phase of my disease. I can only liken the feeling to starting school or a job or something new for the first time.

I may have been slightly distracted by my lovely holiday in Tromso, Norway, I managed to see the northern lights, went dog sledding and packed in a whole host of other winter activities too in spite of feeling below par with my cold!  The photos on this post were taken on my holiday for no particular reason other than they are lovely! I find the landscape and its muted colours very calming. I think I look calm and happy too!

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This holiday was also good for my confidence in terms of it being ok for me to go to India even though I am relapsing.  I feel reassured by my haematology consultant that nothing untoward will happen to me in India apart from a probable dose of the “squits” (his words), in which case I should drink plenty of water! In fact the couple of meetings I have had with my consultant have been very reassuring in terms of timescale and now being more regularly monitored.

The term used by my haematology specialist nurse to describe my situation is “relapsing” meaning I am no longer in remission as my kappa light chains aren’t in normal range but neither have I relapsed as I don’t need any treatment because my myeloma is not active or going to do any damage at the current levels and can go quite a lot higher before they do.

My kappa light chains have gone from 19.4mg/litre in October 2012 (just inside normal range which is 3.3 to 19.4) to 39 mg/litre in December, to 77. 5 on 9 January 2013 to 69.2 on 25 January to 89 on 15 February, my last test. My consultant has set a ceiling of 600 mg/litre for me to go to India and when they reach that level or I start feeling unwell such as anaemic, tired or bone pain I will need to start treatment. To put it in perspective, my kappa light chains were probably around 10,000 when I was first diagnosed and the amount of free light chains circulating in my body were being deposited in my kidney which couldn’t process them and caused my acute kidney failure which eventually led to the diagnosis of multiple myeloma.

The best case scenario is that I plateau around the level that they are now which whilst not normal is not causing any harm to me and so doesn’t need treatment, akin to those with smouldering myeloma or MGUS. It is a watch and wait scenario which could go on for months or even years but I think months is more realistic and years more hopeful as I have full blown myeloma.

The worse case scenario hasn’t actually happened but would have been continued steep rises in my kappa light chains from one test to the next so requiring treatment almost straightaway. I have discussed possible treatment options with my consultant for when the time comes as we need to start having those conversations sooner rather than later to be prepared. He has talked about having a further autologous stem cell transplant followed within 6 months by a “mini allo” (when the stem cells come from a donor).  This procedure was recommended to me after my transplant but I couldn’t have it because there was no suitably matched donor. Well the search has been reactivated and there is a potential 9/10 match available this time but further tests would be need to be carried out to determine the donor’s suitably. It was scary enough contemplating it last time so I don’t want to think too far ahead about that right now.  I am not ready to step back on the rollercoaster yet.  It is and always has been one day at a time since diagnosis and that is the way it has to be, but this mantra doesn’t mean I live each day as if it is my last or I feel under pressure to make the most of each day and party like there is no tomorrow.  However I am aware that this period of relapsing however long it lasts is precious whilst my health is good and I am not treatment.

So here is what I am not doing or being:-

  1. I am not being positive but I’m not being negative
  2. I am not praying as I am not religious
  3. I am not doing any affirmations or visualisations
  4. I am not going into battle with my cancer cells
  5. I am not going to worry
  6. I am not going to get my affairs in order yet
  7. I am not giving up cake!

And so I don’t sound too negative, here is what I am doing or being

  1. I am training and hoping to enter a triathlon in June/July whilst I am fit and able to (that involves 2 x swim,run and bike each week)
  2. I am getting on with my life and having fun
  3. I am going to India in one week’s time for what will be hopefully an amazing holiday
  4. Through some great online resources and contacts, I am learning as much as I can about my disease and what chemical and/or natural agents may be able to control it so I can do as much as I can to facilitate my survival and quality of life (nb this is not battling!)
  5.  I am as always trying to live in the present

नमस्ते

namastē or ha det bra!

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

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

Another cold!

The day after my clinic appointment on Friday 13th April,  I got another cold which came from nowhere, a slight sore throat, tiredness and then the next day a full on cold when I woke up in the morning.  This is my third cold in the seven months since my stem cell transplant and they tend to linger. The one I got between Christmas and New Year lasted about 5 weeks!  I dont understand why exactly but know I am more prone to infections and that my immune system, even in remission, will always be compromised which is perhaps why they last longer as well.  It could also be something to do with building up immunity  post transplant which is why I had to have my childhood vaccinations again (for more on this see my childhood vaccinations post).  It seems to be a common issue amongst my myeloma friends.

As it was persisting and as I had got a weekend trip planned to Palma, I went to see my GP last Thursday and he gave me a 5 day course of antibiotics. Why, I asked as a cold is a viral infection not a bacterial infection?  He said really as a preventative measure as he didn’t want it to turn into pneumonia. Mmm!  When I was on treatment I had numerous colds and coughs and other infections and was given antibiotics as a matter of course. I also had an E Coli infection in my urine which was spotted by my GP fortunately and very powerful antibiotic given to treat it. I turned out to be allergic to Penicillin which I had never previously been allergic to as well as some of the anti prophylactic drugs I was taking.  I developed sensitivities and allergies to all sorts of things whilst on treatment.

Anyway I am slowly getting better and went to Palma and am so glad I didn’t cancel as it did cross my mind that I shouldnt overdo things but my GP told me it would do me good to get a bit of sunshine so off I went!

I had arranged to stay with some friends who are living over there for a few months and had a great time, the sun was out mostly and it was warm. I had warned my friends that I wouldn’t be up to much because of my cold but all that went out the window when I got there!  A meal out on Friday when I arrived, a full day of sightseeing around Palma on Saturday, a hair-raising drive through the Tramontera mountains followed by a couple of hours on the beach at Deia on Sunday and on Monday, I took the wooden train to Soller, then a boat trip to Sa Calobra and then back to Palma just in time to catch my flight back to Manchester.

Phew!

I am delighted that I seem to have recovered from my stem cell transplant so quickly. I was advised 3 to 6 months is about the average time it takes.  Not long after I was out of hospital,  I spent a long weekend in the Peak District walking around 4 to 5 miles a day,  a day trip to the Peak District about 4 weeks after my transplant when I had a walk, hired a bike and biked along the Monsall Trail, a weekend in London which was pretty active, followed by a weekend in Dublin (equally active),  a full on weekend in November to Alicante.   A more restful week in Tenerife in February and then a very physically active week in Sweden in March. Oh and returned to work initially a few hours a day working from home a few weeks afterwards and then back to the office.

I seem to have lived life to the full since my transplant. It’s not conscious, it’s more that the opportunities have presented themselves and I have taken them, the only real bucket list choice was to go to Swedish Lapland to hopefully see the Northern Lights as it has been something I have always wanted to do and once it became clear that I wasnt going to have the donor transplant I got it booked.  I am mindful on a daily basis that my life is shortened but can’t live everyday as if it’s the last, it is just not practical or possible. I think I am just trying to make the most of the opportunities that arise, put myself out there a bit more and try things out which perhaps I wouldnt have done before, partly because I was in a relationship and partly because like most people I took my health or my future lifespan for granted.

In spite of all that I do, I would love to have a day when I didnt think about something connected to my illness, when I just forgot about it and took my life for granted like everyone else around me.

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Falling down, off and over…

I had an incredible holiday in Swedish Lapland.

I started a post whilst I was there using my wordpress mobile app but never got round to finishing it.  I cant seem to transfer over what I wrote on my phone app to this site but this is something of what I put:-

I was going to start off by saying words cant describe how beautiful it is here but thats a bit of a cop out so here are some words that come to mind in no particular order

brilliant white, pure, vast, monochrome, peaceful, ever changing light, thick deep powdery snow crunching underfoot, glassy ice, light blue skies, lumescent mountains, shades of grey, dazzling sunshine. ..

and how am I?

I am extremely happy, cant stop smiling, knackered from all the physical activities such as snow shoeing, skiing, dog sledding and even just walking in the snow but loving it.

Grateful to be here and to experience all this but sad that I may not live long enough to come back here again, soo many places so little time. There’s always a double edge to having a life limiting illness, a sharpened sense of appreciation of the good things but the other side of the coin is knowing that the good things wont last as long as they ought to..

On the second evening of my holiday I was in Abisko (meant to be the best place to see the Northern Lights). I was chatting in one of the cosy lounges with some other guests and someone said they could see the northern lights were starting to show so we rushed outside to get a better look.  I was last and more cautious as it was extremely icy outside and the others were ahead of me and unfortunately I slipped and fell backwards and banged my head on the ice and was knocked out for maybe 30 seconds.  I saw stars but not the ones in the sky!!  No one heard me or saw me as they were further on and I felt completely alone, dazed and scared. I got up slowly and went back into the lodge but reception had just closed.  I saw a couple who I thought were english and told them what had happened but they werent english, they were german but spoke english but werent very sympathetic, I virtually forced the woman to feel the back of my head as a big lump had already started forming.

I went to the restaurant and spoke to a member of staff and he called up someone to come and see me in reception, a lovely young woman called Bella who was more concerned, she got hold of a doctor at Bjorkliden ski resort about 10k away and I spoke to him on the telephone.  Needless to say he spoke excellent english and asked me various questions such as whether I had been or felt sick, had any blurred vision, felt confused etc.  He also asked me about my general health and whether I was on any medication.  I told him I had myeloma but was in remission ready to explain what it was, but he said he knew what it was. He then said he was 95% certain that I hadnt suffered any internal bleeding into the brain but if I felt worse or was sick, I should ring for an ambulance to take me to the nearest hospital which was in Kiruna, 120k away!  He advised paracetomol and ice and so I went back to my room with a bag of ice and a very sore and enlarged head (at least at the back).  Bella was going off duty but gave me her mobile number and got one of the bar staff to knock on the door a bit later on to see if I was ok which I was.

It was hard to get comfortable resting the back of my head on a bag of ice but other than that I was alright, just shaken up and sore.  About 10pm I looked at of my bedroom window and saw a spectactular show of the northern lights, which turned out to be the best I would see all work.  I wished I had been able to go outside and see them in the open sky but consider myself lucky to have had such a near miss.  Some photos below of the northern lights taken with my camera.

 

The next morning Bella knocked on my door and asked how I was which was nice.  I was getting ready to go dog sledding which I had already booked and no way was I going to miss that!  My head was sore and the lump the size of a goose egg.  It was the only real time on holiday that I felt alone and lonely and wished I had someone to look after me.  It reminded me of the time when I was half way through my first cycle of treatment and was feeling quite weak and faint.  One night I got up to go to the toilet and fainted landing flat on my back on the way back to bed hitting my head although on carpet.  My partner heard me fall and rushed out to help me, reassure me and get me back to bed.  For those of you that dont know what it is like, fainting or passing out is a strange strange feeling, funny dream like scenarios are whooshing around you in a black space inside your head and when you come round, there is a sense of confusion, relief and helplessness .  I should know, I am an experienced fainter!  Anyway the next day I had a little bump on the back of my head but because I was paranoid about every single little ache or pain  or sniffle or cough I went to A&E to get it checked it out but that was the second time that day I had been to A&E, the first time over a bit of a temperature and cough so why I didnt mention it the first time I dont know, anyway I was very anxious and paranoid in those early cycles of treatment.

Back to the holiday, I was determined not to let this nasty fall stop me from doing anything but continued to fall over, fall down and fall off things.  I fell off the dog sled when mushing about 5 times but into soft snow, the dogs would run on and the hardest thing was walking in deep snow to the sled which hopefully someone ahead would have grabbed.  I slipped on icy paths a couple more times despite walking like a penguin but remembered to hold up my head.  I fell over skiing a couple of times but no big deal and even fell over snow shoeing!  I was absolutely delighted that I didnt come off the snowmobile as that would have been scary.

I was relieved to get home in one piece. I went for a run/jog the next day to resume my training for the Manchester 10k run and guess what I fell over again and grazed my knee, nothing too serious.  I was looking forward to the horse riding trek I had booked ages ago for the following Monday morning. Off I went, such a lovely morning and I was told I was going to be riding Jack, a tall chestnut horse who looked very steady. The trek lasted about 90 mins, there were 3 of us as beginners and we walked around through woods and fields with one man holding onto the reins of the horse in front. I cant say I enjoyed it particularly, I was saddle sore whilst actually riding the horse! Anyway on the last turn around the field before we got back to the riding centre, my horse got spooked by a man walking round a bend towards us and threw me off  (I didnt want to tell you Mum if you are reading this!). It was a long way down but off I went and landed on my right side and back  (BUT NOT MY HEAD!). I was so upset and shaken, also in a state of disbelief about what had happened.  How many times had I fallen recently?  I am now suffering from a whiplash injury diagnosed by my GP and twinges in my back. My head is still sore and lumpy and I have got golfers elbow (both elbows) and De Quervain’s syndrome in my right wrist and I dont even play golf.  My body feels battered and bruised and I worry that this is because of myeloma (which can cause weakened bones) or that all the falls etc have weakened my body and made me more vulnerable to the myeloma coming back in.

I know my immune systmem will always be compromised because of myeloma even when I am in remission but I am not sure how my bones are affected. When first diagnosed I had a full skeletal X ray which was clear and didnt show any fractures or lesions.  Some myeloma patients can have lots of different fracture sites but fortunately I didnt.  My consultant told me I could do high impact activities such as skiing, tennis, running etc so based on that I have been and am doing those things but I didnt bargain on falling over as much as I have recently.  Please  … no more falling over, my body cant take anymore!!

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Filed under Health, Multiple Myeloma, Myeloma