The Loneliness Of The Long Distance Runner

I am obviously not a long distance runner, not even a short distance runner at the moment but the solitary nature of running is used as a metaphor in this excellent short story as the main character turns to long distance running as a way of escaping both emotionally and physically from his desperate situation.

Taking part in a triathlon this year and doing the 10k last year has become something similar to me, a way of escaping the world of myeloma both mentally and physically. It signifies that I can do normal things (though some would say that it is mad not normal) and reach a level of fitness which has no place in the world of myeloma. I truly appreciate having been able to be fit and active since my stem cell transplant if not fitter than before diagnosis without bone pain or in fact any pain that some of my fellow myeloma suffers have as a legacy of myeloma even when in remission.  As for the loneliness, living with myeloma can be lonely and scary. I appreciate the acknowledgement of this by a long distance friend who doesn’t have myeloma in a comment made by Prue about my last post, the Myeloma Trilogy  “I reckon it must be quite a lonely place at times…so this is a hello!!!

However I am pleased to say that I won’t be on my own doing the Salford Triathlon next Sunday. My individual place has been substituted for a team place and I am grateful to two friends for doing the swim section and the run section at the end. I still intend to do the middle 20k bike section but have someone on standby if I cant.  I have had to accept that I am not in a position health wise to do all of it and stopped the intensive training a good few weeks ago, finding myself breathless and exhausted. Anyone that knows me will know that I hate to admit defeat and don’t like giving up but now I have accepted it I am pleased and excited to be doing it as part of a team and hugely relieved that the pressure (all of which was self inflicted) is off.  The photos below were taken at a open water swim in a lake in Cheshire on a lovely sunny day and yes that is me gliding through the water with a Myeloma UK swim cap on! Just to prove I had been doing the training!

So neither lonely nor a runner but I will be taking part in the Salford Triathlon on Sunday 18th August and I hope you will support me. You should be able to click on the Just Giving Link on my blog to take you to our  Just Giving Page.  Needless to say I am raising money for Myeloma UK.

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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.

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!

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.

From the Run to the Runs

 

Nearly three weeks after the elation of running the 10k and about a week after I got back from a holiday in Italy,  I got a very bad episode of sickness and diarrhoea. Oh the highs and the lows.

No one I had been with or eaten with had got it so it was something I picked up all by myself.  Sunday night and Monday day  were the worst and I had to cancel my monthly bone strengthener treatment (Zometa) at the Haematology Day Unit as I wasn’t well enough to go in and also you are not supposed to attend if you have had sickness or diarrhoea within the last 24 hours.  By Tuesday, I was getting a cold as well. I rang my GP and he suggested I take antibiotics but as it was getting to closing time it would be too late to issue a prescription. I remembered I had an emergency supply at home so he told me to take them.  I started to feel better over that evening and the next day the trend continued so I went in for my Zometa on Wednesday morning. I had wanted to go because before Zometa is administered a blood test is taken to check kidney function. I knew I was being paranoid but some of the symptoms I was feeling with the infection were similar to those I had when I went into acute kidney failure which were shortness of breath, tiredness, lack of appetite so I was relieved that my glomular filtration rate was over 90.  Relief but I am annoyed with myself for the unnecessary anxiety I felt.

It also took me back to almost the exact same time a year ago when I was admitted to hospital for 4 days with chronic diarrhoea, the cause of which was unknown. It started when I was on a short break in the Algarve. I thought it would get better when I got back but it didn’t, it got worse and so I rang the doctor on the haematology ward and she said that I should probably go to A&E. It was Saturday night and I didn’t want to go and sit for hours in A&E  so she agreed I should go first thing on Sunday morning if it wasn’t improving.

I drove myself there on Sunday morning expecting to be back in a few hours as I had planned to go with friends to the Chorlton Open Gardens Day (why I thought I was going to be able to attend that is beyond me) but I ended up being admitted, put on a drip and blood and stool samples taken.

Because of my infection and risk of infection due to just completing my last round of chemotherapy I was put in an isolation room on the Medical Assessment Unit which is a pretty dismal ward where people are put because there is nowhere else for them to go and they cant stay in A&E. I had to call some friends to bring some pyjamas in for me and some other stuff and drive my car to another car park.  The room was hot, small, stuffy and noisy.

I then got moved to a room on the acute medical ward and spent another couple of days there. it had a pay TV so at least I could watch Wimbledon. They weren’t giving me any antibiotics to treat it until they had established the cause. It was at the time of the outbursts of ecoli in Europe which was eventually linked to a bean sprout producer in Germany I think so the medics were concerned that it could have been ecoli but then ruled it out as there were no reported outbreaks in Portugal and tests were negative.

The only good thing about being in hospital is that I bumped into my haematology consultant whilst I was having a walkabout and she told me that there was good news about the results of my bone marrow biopsy which I had done the week before.  There needed to be less than 10% abnormal cells before I could proceed to the stem cell transplant stage of my treatment and when I saw her in clinic on Friday she confirmed it was less than 5%.  So I was discharged on 22 June with some phosphate supplements as my phosphates were low and then gradually got better but running to the toilet 14/15 times a day is not a pleasant experience! Below is an extract from my discharge sheet.

So with having a compromised immune system I was worried that I was going to end up in hospital again but this time my body fought it and I recovered within 48 hours and also was able to attend the Chorlton Open Gardens this year which was on Sunday 24th June. About 25 gardens in Chorlton were open to the public in aid of Freedom against Torture Charity and I managed to get round 15 of them, all of which were lovely, some of which were stunning and inspiring. Here is a photo of a pond I particularly liked.

So all good again.  I think I was particularly anxious this time because of the uncanny timing with the episode last year, the symptoms of fatigue and shortness of breath which were part and parcel of my infection which I was worried was to do with my kidneys and because over the last two months or so 4 people of around my age with myeloma that I know of have died because of serious infections. When I hear about this I feel extremely sad for them and their families, scared and down too because it is a reminder of what may happen to me. Not likely whilst in remission but I DONT KNOW HOW LONG THAT IS GOING TO LAST! I have a clinic appointment next Friday when I should find out my latest free light chain results, wish I could stop feeling anxious.

Just read a very good quote from Daily Encouragement by Daisaku Ikeda which a facebook friend posted.

The important thing is to advance brightly and strive to be victorious at each moment, right where we are; to begin something here and now instead of fretting and worrying over what will happen. This is the starting point for transforming our lives.

This was such a timely post for me, thanks RF!

The Great Manchester 10k Run

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

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

The Bupa Great Manchester 10k Run 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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