Category Archives: Stem cell transplant

Falling off the plateau

It seems that I have fallen off the plateau that I had made my temporary home for the last few months before the descent into relapse.   Just as I was settling in and adjusting to my new territory,  I have yet again been reined in by my rising kappa light chains which have jumped rather dramatically from 77 mg/litre to 617 mg/litre in the space of a month.

Plateau

I didn’t stay at plateau point very long but it was great whilst it lasted!

Needless to say I was as disappointed and surprised as my consultant who arranged for me to have a retest last week to see if the jump is for real or some kind of freaky fluke.  There is an outside chance at most that there could have been a massive error in the lab testing but I am not holding my breath and I am not praying for a miracle or some such thing.

I mentioned in a previous post (Hello Relapse Goodbye Remission Part 2 The Calm after the Storm) that my consultant said as long as my light chains weren’t above 600mg/litre I could go to India. I feel so fortunate that I was able to go before the steep rise to 617 this last month.

So the plateau was short, January to April, to be precise, but I had adapted to the new phase of my disease and the fact that I was no longer in remission fairly quickly, once over the initial shock of relapse.  I was hoping that this phase might last until September, which would be two years post stem cell transplant, a respectable period of time.  I became comfortable with the new normal for me and was off again planning and booking trips, playing matches for the ladies team at my tennis club and starting a 16 week training plan for the Salford Triathlon in August.  This was on the premise that I would not be on treatment and my light chains would remain in the bracket of around 70 to 90.

And now I am back to not knowing what I can do when.  I feel like I get slapped down by my disease whenever I start taking things for granted.  Logically I know that my myeloma isn’t capable of such vindictive behaviour, it doesn’t have a personality, being just some cancer cells doing their thing, so if I get into slapping them back we are entering into battleground territory and you will see from a previous post (Hello Relapse Goodbye Remission) that I am not battling my disease.  However I do feel a little like Humpty Dumpty at the moment, getting to the top of the wall, balancing there a while, happy, and then falling off except that hopefully as I am not an egg, I can be put back together again!

Humpty_falls

I expect to be starting chemotherapy treatment soon after 20 months of being drug free since my stem cell transplant, apart from the monthly infusion of Zometa, a bone strengthening treatment. I am dreading it and my head is spinning with the various options that are on the cards. It is good that there are options, but options mean choices and I really don’t know how I am going to decide between them… but more of that another time!

This is likely to be my last post for some time with the blog subtitle “living in remission”.  Of course I am hoping to achieve remission or stable disease at some point in the future but I am conscious that the remission I have enjoyed may not be as long again. Unfortunately the law of diminishing returns usually applies to a second stem cell transplant if that is what I decide to have so that I may only get one half to two thirds of my first remission.

Whilst the past 20 months have not been easy, they have generally been good. I have been able to live life well with no health issues and no pain unlike some with Myeloma. I want to appreciate and celebrate what I have done whilst being at the top of the mountain so to speak since from my stem cell transplant on 1 September 2011 and then latterly on the plateau.  In more or less chronological order some of the highlights are:-

  • cycling along the Monsal trail in the Peak District one fine autumnal day
  • long weekends in London, Dublin and Alicante
  •  starting my blog
  • a holiday to Tenerife
  • seeing the Northern Lights and going dog sledding in Sweden
  • playing the piano again
  • a stay in Palma, Majorca
  • running the Manchester 10k
  •  a holiday to Lake Maggiore and Switzerland
  • a trip to Oxfordshire and Somerset
  • joining an outdoor fitness class
  • giving a patient experience talk at Myeloma UK info day
  • a tennis holiday in Corfu
  • a trip to Tromso, Norway to see the northern lights and go dog sledding (P)
  • seeing a wild tiger whilst on holiday in India (P)
  • playing (albeit badly )in a tennis tournament (P)
  • training for a triathlon (P) (R)
  • finally and hopefully going to Paris on Eurostar, to see Monet’s garden at Givernay (R)

Those marked P indicate done whilst plateauing

Those marked R indicate doing whilst relapsed!

Thanks to everyone that I shared some of these things with and those that supported me and encouraged me to do them.

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

A Passage to India

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Fortunately my experience of India was nothing like the uncomfortable story described in the book by EM Forster but as the book is one of my favorites it seemed like a good title as any. It also struck a chord with me as I am on a passage of sorts at the moment in relation to my myeloma. I looked up the meaning of passage in the free online dictionary and it came up with many as you would expect so I have just selected the ones that I find relevant to me:-

pas·sage 1 (psj)
n.
1. The act or process of passing, especially:
a. A movement from one place to another, as by going by, through, over, or across; transit or migration.
b. The process of elapsing: the passage of time.
c. The process of passing from one condition or stage to another; transition: the passage from childhood to adulthood.
d. Enactment into law of a legislative measure.
2. A journey, especially one by air or water: a rough passage on the stormy sea.
3. The right to travel as a passenger, especially on a ship: book passage; pay for
8. Physiology An act of emptying, as of the bowels.
9. Biology The process of passing or maintaining a group of microorganisms or cells through a series of hosts or cultures.
10. Obsolete Death.

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[Middle English, from Old French, from passer, to pass; see pass.]

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I have come to terms with the fact that I am relapsing and am in the process of passing from one condition or stage to another; transition as in 1c above. The difficulty I have is not knowing where I am going and how long it is going to take to get there!  I hope my passage is a long one and whilst we all arrive at no.10 at some point, I hope that isnt for a while either!  My passage or transition has already lasted four months and at my last light chain test after I came back from India my Kappa light chains had dropped from 89 mg/litre to 77 mg/litre. My haematology specialist nurse said I should go on holiday to India more often! Maybe I will?

This trip took on so much symbolic significance for me. It was the trip I had to cancel just before diagnosis due to kidney failure, it was a destination that seemed out of reach after diagnosis due to risk of infection and low immunity and then the trip I had booked was cancelled. After sorting out a new itinerary, I then found out I was relapsing and wasn’t sure I would be able to go or even wanted to go. I lost a bit of confidence.  I am not a believer in fate but I was starting to develop a sense of foreboding about the trip, that maybe I wasn’t meant to go to India.  Then there was a last minute hitch with travel insurance.

Before I knew I was relapsing I had purchased an annual travel insurance policy which was at a very reasonable price to include my condition. One of the standard questions I had to answer about my condition was whether I was currently in remission to which I answered yes. It occurred to me a few days before I was due to go that I should inform the insurance company of what I thought was a slight change of circumstance in that my light chains were out of normal range but I didnt need any treatment and was fine to go to India according to my haematology consultant. I rang them up and the conversation went something like this………….

Me “I am going to India on Friday and I need to inform you of a change to my circumstances in that my myeloma markers are out of normal range”
Them “are you in remission as you declared when you took out the policy?”
Me “I dont know, I dont need any treatment, my markers are just higher than they should be”
Them ” are you currently in remission, yes or no?
Me ” I dont know, depends on the definition of remission,  I’ve not relapsed”
Them ” Do you know what stage of disease you are at”
Me  “I dont know”
Them ” You need to ask your consultant whether you are still in remission and let us know by tomorrow afternoon, we need a yes or no answer”

So I email my consultant the next day with the question “am I in remission, the insurance company run a standard script about myeloma and the answer can only be yes or no. He kindly takes the time to reply that unfortunately he would have to say that technically I am no longer in remission and he gets this all the time.

I ring up the insurance company again and the conversation went something like this…………….

Me ” my consultant says I am not in remission but I am fine to go to India”
Them “If you are not in remission, are you at stage 1 or stage 2 myeloma?”
Me “neither apply to me, this is not a relevant question”
Them “then is the answer “I havent been told or dont know what stage I am at”
Me “Well as none of the other answers  applyI suppose this is the nearest”
Them “There has been a change of circumstances which mean that we will have to decline your policy. Is there anything else I can help you with today?”
Me “yes, travel insurance you bastards!”

So I ended up spending my last evening trying to find a reasonable priced single trip policy online, instead of relaxing and doing a little bit of tidying up and final packing.

As those of you with myeloma or other serious illness, the first hurdle to overcome is answering the question

“Has any member of your party ever been diagnosed with a terminal prognosis?

Yes No

If so, how long is the terminal prognosis from the date of return from your trip? (in months)

I always say no to this question as no one as ever told me I have a terminal illness, incurable yes but not terminal!

The next hurdle is to declare your condition and answer the specific questions relating to it as follows:-

Medical condition:
Multiple myeloma

Questions
How long ago was the diagnosis made?  Less than 5years, 5 – 10 years,, Over 10 years
Have you had a bone marrow or stem cell transplant?  Yes                                                                                                 Yes – but it didn’t workNo
If you have been told, please specify what stage your disease is at currently Stage 1Stage 2                                                                                             Stage 3My disease is currently in remissionI don’t know or have not been told my disease stage
Are strong painkillers being taken?    Yes                                                                                                 No
Has this condition caused a bone fracture in the last 12 months?    Yes                                                                                                 No
Has the condition resulted in any of the following problems? Impairment of kidney functionSpinal cord damage causing leg weakness or incontinenceBoth of these                                                                                       None of these

I have already declared these problems

I got quotes varying from £450 to the one I eventually settled on for £110 which seemed pretty good for an 18 day trip. It excluded cancellation but as my trip was less than 12 hours away I didnt think I needed cancellation cover.

From this kaftaesque experience I learned two things:-

1. That technically I am no longer in remission so my blog subtitle will have to change from living in remission to living in what?? Any suggestions welcome! With hindsight it was a silly subtitle as I knew that that remission wouldnt last indefinitely
2. Insurance companies insure you against risks but avoid taking any! However I dont regret telling them as if something had happened on my holiday which was arguably due to my “condition” I would have had a struggle getting them to pay up. What I regret is that I didnt tell them sooner so I would have had more time to deal with the fallout and get alternative cover instead of going through all that stress and venting my frustation at the poor woman on the telephone

And off I went on my passage to India and I am pleased to say that I had an absolute blast without any health issues at all. No delhi belly, no colds, nothing and I had a lot of energy which I needed for such a demanding trip.  What I didnt need was the dammed insurance!  This isnt a travel blog so I dont want to go into too much detail of my holiday but my two top things were seeing the Taj Mahal and seeing a wild tiger in Kanha National Park.  My “passage” was by car, train, bus, cycle rickshaw, autorickshaw or tuk tuk, foot, motorbike, plane and more unusually elephant, hot air balloon and safari jeep!  I made new friends, ate delicious food, drank a lot of marsala chai, and watched the famous goan sunset for 4 nights at the end of my fantastic holiday.

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What was so refreshing about the holiday was that I felt NORMAL, in fact whole days went by sometimes without me even thinking about myeloma or anything to do with it. On some of my many long “passages” I would look out of the window and have idle fantasies about my next trip to India and where I would go, would it be further north, skiing and trekking in the Himalayas or down south to Pondicherry or both? Then I would catch myself on and remember that I had myeloma, was relapsing or whatever I am doing and that I cant make any such plans. So I feel incredibly fortunate that myeloma didnt prevent me from going on this trip which almost seemed fated not to happen , that I had such a fantastic time and my expectations were met, that I didnt get ill and that my dream of seeing a tiger in the wild was fulfilled and was every bit as  inspiring as I hoped it would be .

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Filed under Cancer, Health, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant, Travel, Uncategorized

Hello Relapse Goodbye Remission Part 2 The calm after the storm

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P1010458

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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P1010450 P1010373 P1010514

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

The Nightmare Before Christmas

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I’m not keen on this time of year, approaching Christmas, things seem to have a habit of going wrong for me, especially 2 years ago.

On 14 December 2010 at around 11.30pm I was admitted via A&E to the renal ward of Manchester Royal Infirmary with acute kidney failure. I had not been well for a week or too, and had to cancel flights booked to India departing on December 15th on my GP’s advice due to a urine infection. I was suffering with nausea, breathlessness, fatigue and general weakness but went into work in the morning as usual. I sat at my desk but was unable to concentrate on anything, my secretary noticed, had a word with the office manager and I was sent home. When I got home I went to bed, it was a cold winter’s day, it might have been snowing. I was sleeping when my doctor rang late in the afternoon to tell me that my recent blood tests showed that my kidney function had deteriotated to 10 to 15% of what it should be in the last 7 days between blood tests and that I should go to A&E straightaway. I asked him would I be there long, ridiculous question really!! He said I should pack a bag.

My partner at the time helped me pack a bag and both of us in shock, we set off first to the GP surgery to pick up a letter with the blood tests and my notes. Then to the hospital about 3 miles away. I remember clearly that it was snowing, the roads were covered in snow and the driving conditions, slow and difficult. That was the wintry beginning of my journey into unknown territory.

I was eventually admitted and then as those of you will know from reading this blog was diagnosed with Multiple Myeloma on I think 23 December. I was discharged on Christmas Eve, relieved to be out but hardly in the mood for celebrating. Even so there were some poignant and happy moments.

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That was the start of my new life. There was before and there was after and even though my life now in many respects has the outward appearance of my life before it just isnt. I am not saying it is worse, it is different and sometimes better. I also need to throw into the mix that shortly after diagnosis I split up with my partner of nearly 20 years standing so the before and after is very much interwoven with that traumatic event. In my mind that has been emotionally tougher than the cancer diagnosis to deal with. The loneliness of my journey has been acute at times and though I never really needed a “carer” for any physical needs, I have really missed and still do, having someone to share my journey with, the good and the bad.

The next few months of treatment combined with my relationship ending were the toughest times I have ever been through but get through it I did.

“At the end of the day, we can endure much more than we think we can”

Frida Kahlo

kahlo painting

So last year at this time, nothing dramatic went wrong and I was recovering from my stem cell transplant. I had a bone marrow biopsy in early December and I was told that it was less than 5% abnormal plasma cells so that was good news, I was officially in remission! However the news was tempered with the not so good news that I had chromosomal abnormalities that could mean a poorer outcome and shorter remission so a donor transplant was being recommended within 6 months. Having agonised over whether to have a second donor transplant and deciding to have one, I was told that a donor couldnt be found when the search was initiated.

For more on the donor transplant read my post “clinic appointment on Friday 13th”

https://wendyduffield.wordpress.com/2012/04/06/clinic-appoint…on-friday-13th/

And this year, what could go wrong, well lots could go wrong, I’ve been having some strange hip pain which I thought could be bone pain caused by myeloma coming back but it turned out not to be much to my relief.

However there is just one tiny little thing …………..!

I had booked a holiday to India, going in March 2013, similar to the one that I had to cancel 2 years ago so I was looking forward to it but yesterday I was contacted by the tour company to say that as I was the only one on it, it had been cancelled. Strange coincidence but completely different circumstances and as I cant cancel the flights I will just look for another holiday so its not a big deal.

So no nightmares before Christmas this year and nothing hanging over me so I intend to enjoy the time with my family, two years on from diagnosis. Another milestone on my journey. It is something of a dichotomy as I am impatient to reach the milestones because they mark more and more time in remission but on the other hand I want the time to go slowly so that I can appreciate it more! I need to have in mind that..

“Life isn’t a matter of milestones, but of moments.”

― Rose Kennedy

Seasons Greetings to all

 

 

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Filed under Cancer, Health, 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