Tag Archives: holidays

Butterfly On a Bush

A few days ago on a bright and breezy day I was pegging out washing on the line when I saw from behind one of my T shirts the most beautiful peacock butterfly land on the mauve flower head of a buddleia bush.  It was struggling to stay on the flower because of the gusts of wind blowing it around and it was flapping its wings to try and stabilise itself. I ran back into the house to get my camera and hoped it would still be there when I got back. It was and I managed to take a couple of shots of it.  It was clinging on resolutely, occasionally fluttering off unable to stay on but kept coming back to land.  The fragility of the butterfly’s situation reminded me of my own recently as I have been desperately holding on waiting for treatment to start, both emotionally and physically.

P1020593 (2) P1020592 (2)

Since my post the Myeloma Trilogy, I have completed my first cycle of treatment. The Onyx trial finally opened on 9 August, I was the first patient and my trial tests really were whisked off to a lab in Paris (which spookily was my fantasy involving Lizbeth Salander in the Myeloma Trilogy post) and I was so hoping to be randomised to the new drug, Carfilzomib but there was only a 50/50 chance.  Just my luck I got the old drug, Velcade, which I could have started off trial two months ago off trial before I starting feeling the ill effects of having active myeloma. I was devastated and inconsolable, the poor trial nurse who broke the news to me didn’t know what to say and then had to perform a bone marrow biopsy on me!  At this point in time, it wasn’t that I wanted the new drug because I thought it would be a more effective treatment, it was because I had waited all this time for the trial to open to the detriment of my health when I could have started the old drug off trial before that happened.

Oh well, I have become resigned to it now like many other things I have become resigned to over the course of my journey with Myeloma, the loss of control is probably one of the hardest issues to deal with. The second cycle starts tomorrow and I hope that after two cycles there will be a significant reduction in my kappa light chains. I have my treatment schedule now but plans seem impossible as it is unpredictable how I am going to feel or what I can do on a day to day basis. A holiday in Italy has been cancelled as well as a tennis holiday in Greece at the end of this month so I am feeling rather sorry for myself. My self pity has been deepened by the excrutiating shoulder and arm pain I have at the moment caused by a trapped nerve in my neck which may or may not be related to myeloma or the treatment. I will be having an MRI scan to see what is going on soon I hope.

However I have managed to do some more enjoyable things in between hospital visits and prior to my trapped nerve such as canoeing down the river wye with some friends from Kerne Bridge to Symonds Yat in a 3 person kayak which was lovely. Oh and did I mention that I managed to do the bike section in the Salford Triathlon two weeks ago?? It was hard going but I took it easy and let go of my natural competitive inclinations and “allowed” everyone else to overtake me. My team mates did brilliantly too and at the end I felt overwhelming relief, firstly because I had been able to do it and secondly because it was all over now and I didn’t have to stress about it anymore. Action photos below, the small one of me coming off the bridge I really like but I cant improve on the quality or size without buying it as it was taken by a commercial photographer. I certainly look the part, who would know that I was week one into chemotherapy treatment and that earlier that morning I had struggled to get up the stairs to the registration area for the triathlon due to my shortness of breath!

wendy canoe  SALF4328 P1020608 (2)

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Filed under Cancer, chemotherapy treatment, Health, Multiple Myeloma, Myeloma, Relapse, Uncategorized

A Room With A View

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“Though life is very glorious, it is difficult.”
―     E.M. Forster,     A Room with a View / Howards End

 

 

 

 

 

 

Another of my favourite books by one of my favourite authors.

The title being apt because I have had my own room with a view of sorts recently.  I took an unplanned short break for a couple of nights in the Manchester Royal Infirmary, not quite the same as Italy!  During this recent glorious spell of hot dry weather I had been feeling a little cold and shivery and was wearing warm winter clothing in the office with the window closed, very unlike me. When I came back from work on Wednesday I was exhausted and was intending to take some paracetamol and lie down but something made me take my temperature with the old velcade thermometer I had been given when I first started chemotherapy and it was 39.1, quite high then. The advice when I was on chemotherapy and after my transplant was to contact the haematology department if your temperature was over 37.5 but did that apply when not on treatment?

I wasn’t sure so I thought I would ring the out of hours haematology line at my hospital. I explained I had relapsing myeloma and my temperature was 39.1 and the person I spoke to advised me that I should go to A&E as I may need antibiotics. I anticipated that they would say that, from past experiences, having attended several times whilst on treatment.

I rang a friend who kindly gave me a lift. I wondered about packing an overnight bag but decided that I would probably be home later and it wasn’t necessary. I duly arrived and showed my haematology alert card which means that I shouldn’t be left in the main waiting area too long and within a short space of time I saw the triage nurse. My temperature had dropped to 37.9 by then and I was beginning to wonder whether I should just go home!

I was then taken to a side room in the amber area. About 3 hours later I saw a doctor who said he didn’t want to give me antibiotics yet but wanted to admit me for observation as a high temperature and fever was a sign of infection. That was about 9pm and I was left there until about 3.30am with a break for a chest xray, after which I was eventually moved to a bay on the acute medical unit. It was a truly awful experience trying to sleep on a trolley with bright lights and continual noise! When they took my temperature again at 4am it had gone back up to 38.4.

From there I was later moved again to a haematology ward after I saw my haematology consultant who said he wanted to keep me in another night for observation and give me some intravenous antibiotics.  It was a different ward to where I had my stem cell transplant but a similar set up with haematology nurses who reassuringly knew what they were doing and with what they were dealing. I was sharing a large room with another patient undergoing a stem cell transplant who was very poorly and the room had ceiling to floor windows with a view of the a car park with some grassy areas beyond it and a modern section of the hospital on the far side of the road. Certainly one of the best views to be had from a hospital bed in the MRI!

Well before I got the intravenous antibiotics, my temperature had stabilised and I felt ok but exhausted through lack of sleep for more than 24 hours. My consultant told me I couldn’t possibly start treatment with an infection in my body as it could end up being much much worse and I expressed my frustration that treatment had been delayed to the point where I had got an infection and now couldn’t start treatment. He tried to explain in a rather abrasive manner that it wasn’t vital that I started treatment straight away as my kidney function was fine and my blood counts were normal but I didn’t really take it in and just felt that my myeloma would spiral out of control untreated. After he had gone I am afraid that I just broke down and cried and cried and cried!  I felt alone and as out of control as I perceived my myeloma to be.

I calmed down a little later on in part due to a chance encounter with my former lovely consultant in the coffee bar who reassured me with far more empathy than my consultant showed, that it would be ok to delay treatment and it wouldn’t affect the outcome although I didn’t ask her what damage if any, was being caused by my rising kappa light chains now at 1032 mg/litre.

So with all the endless waiting around for tests, doctors, nurses and medication over the next 24 hours and in the absence of a working TV or a decent mobile signal, wifi or even a book I had no distractions in my room with a view.

hospital room

I watched from the chair by the window, people sitting on the grass basking in lovely sunshine, smiling, drinking, eating, being happy and going about their business, in contrast to my sterile prison like environment. I gloomily realised a view of my future, of admissions to hospital, treatments, clinic appointments, transplants, a life over which I had no control but which was shaped and determined by medics, numbers and endless blood tests. This would be the life ahead for me and I would never experience that careless abandonment of those people outside sitting on the grass. It would be a life that set me apart from my friends and peers whom I am already conscious of boring with the latest tales of my relapse and kappa light chain figures. It can only get worse in the future and I don’t want to burden my friends with that but neither can I pretend to be unaffected by it. I don’t want talk about it but I do want to talk about it. I am in danger of becoming alienated from the world my friends and peers inhabit, of planning for their future retirement, booking holidays, downsizing, celebrating their 60th birthdays and making assumptions about their futures which I cant make.

And I know my future will be about more than that and there will be good times ahead but right now I am feeling a little bleak and don’t want to or cant feel positive or “keep my chin up”. I try to live from day to day but my two days away didn’t help to keep my spirits up.

“I never think of the future – it comes soon enough.”
―     Albert Einstein

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

The test that was right that was wrong that was right

“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”
―     Rainer Maria Rilke

monet garden

When I got back from Paris a week last Friday on the Eurostar trip with my parents to see Monet’s garden, amongst my post was an odd letter from the Haematology department saying my appointment with the consultant had been cancelled and that an appointment had been arranged for Friday 17th May instead at 12pm. By the time I got the letter it was too late to ring them to say I had only just got back so it had to wait until Monday. I didn’t really worry about it but rang on Monday and spoke to the appointment secretary and explained that I had been away and unable to attend. I asked why it had been brought forward and was told something like the doctor was trying to clear down his list for 31 May when my appointment had been scheduled for.  It was rearranged for 24 May.

I duly attended, expecting to discuss the erroneous test result (see my last posts, falling off the plateau  and back on the plateau ) and perhaps to have another discussion about what treatment I might have when I do relapse bearing in mind that my kappa light chains were only 117 mg/litre, there was no immediate concerns.  I had the last appointment and when I arrived clinic was extremely busy but as I was having Zometa  (a bone strengthening treatment) as well, I went to the day unit for my bloods to be taken and my kidney function tested as usual. I had Zometa at about 3pm and still hadn’t seen my consultant but as I was leaving the day unit I bumped into him and the haematology specialist nurse as they were coming to find me. Seeing the nurse there as well made me feel slightly anxious as she doesn’t normally sit in on my appointments. We went into his consulting room and he then told me that unfortunately the first test showing the massive rise in my light chains to 617 mg/litre was in fact correct and it was the retest that was wrong. I was completely stunned. He said that both tests had been retested several times and that it was confirmed. The lab were unable to give any explanation as to how they got the retest result so wrong.

My consultant said on that basis I was now relapsing and we needed to sort out a treatment plan pretty quickly. We discussed different options but my head was in a complete spin and I couldn’t really concentrate on what he was saying. I am to ring up in a few days time to find out the result of the light chain test taken on Friday and if my kappa light chains are over 1000, I have to make an urgent appointment to see my consultant and have my kidney function tested which is a big concern and possibly start treatment straight away. If they are less than 1000 I will see him on 14 June by which time a trial may be available which might be a good option for me. So unless by some bizarre chance my light chain test this time shows a massive reduction in my light chains, I will be starting treatment very soon and all my plans of doing the triathlon in August and a couple of holidays in September will be out of the window.

After the appointment, I was in shock and disbelief.  It felt a little surreal. I debated whether to go to a friend’s 60th birthday meal that evening but I did and it was fine but that night I couldn’t sleep and the following morning I was low and tearful and was thinking of putting off my friends visit to me for the weekend that thinking that my mood would be so low I wouldn’t want to see them.  I went to my outdoor fitness session in the local park hoping that it would raise my serotonin levels but it didn’t really have that effect, instead I was worrying about whether too much exercise would be stressing my body!

My friends arrived, it was a lovely day, I told them the bad news and by the afternoon my mood had completely lifted and I was dancing to salsa music round the kitchen and the garden whilst making dinner. I am still feeling okay, after all I am in no worse position than I was when I found out that my light chains had risen to 617 on 19 April. I adjusted to that after the initial shock and disappointment, then had the elation of finding out that test was supposedly wrong, had cocktails on my birthday with friends, went to London and then Paris in a celebratory mood ( I probably wouldn’t have gone if I had known my light chains were over 600). Monet’s garden was truly beautiful (aside from the drama of my mother falling over and breaking her wrist) and Paris was well Paris, the city of light!

It is a cliché, but life at the moment is truly like being on a roller coaster!

coaster

In fact dealing with the emotional effects of having myeloma is far more challenging than the physical effects at least for me so far. It has truly been a mind blowing experience. How I can go from feeling so desperately low and alone on Saturday morning to happy and elated by late afternoon is just as strange as the recent sequence of test results.

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Filed under Cancer, chemotherapy treatment, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission

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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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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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

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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Filed under Cancer, Health, Multiple Myeloma, Myeloma