One year on

It will be exactly a year on Saturday since I had my autologous stem cell transplant (called autologous because my own stem cells were used). The day they are given back to you is called Day Zero, the days before minus 1 minus two etc. On -1 day, I had enough of a chemotherapy drug called Melphalan to kill me in an isolation room at the Manchester Royal Infirmary Ward 44 but on day zero  (1st September 2011) I was rescued by having my own stem cells put back which had previously been collected from my blood stream and frozen.  In my case I just had one bag back as there was a high concentration of stem cells in my collection and had harvested 4 bags in total, the other 3 bags are still in a freezer stored at some ridiculous number below zero. It took about 20 minutes by infusion. An anti hystamine is given prior to the infusion to minimise any reaction. Its no big deal on a physical level and I didnt have any reaction other than to emit a smell of sweetcorn which is very common. I couldnt smell it to start with but the nurse could. Once administered the baby stem cells needed to develop to form my new immune system as Melphalan was in the process of destroying my old one.
I waited impatiently in my isolation room for my neutrophil count to drop to zero which meant I had no immunity and takes about a week to kick in. I was allowed home over the first weekend as I was not neutropenic. Then as I got down to a lower neutrophil count, the side effects of the chemotherapy such as mouth sores, sickness and diarrhoea, nausea, loss of appetite and extreme fatigue develop and continue for about a week. My recollection of this phase is somewhat of a blur but I know that I got off lightly compared to some people with the side effects. My main issue was fatigue and lack of concentration. I had taken lots of books, audio books, DVDs, IPod and my laptop in with me but found it difficult to concentrate on anything for longer than 15 to 20 minutes. The TV in the room didnt work very well so I couldnt distract myself with that but the one thing that I did enjoy was the complete series of the danish version of the Killing which was gripping!
What stem cells look like (not mine)

 

I gradually started to feel less fatigued and more bored. My appetite returned and unusually for someone going through this process I wanted to eat but not what was the standard hospital fare. I started ordering off the Halal menu as the food was fresher and more interesting but perhaps a bit spicy for my delicate stomach. Then I discovered the West Indian menu and the Kosher menu but on the one Sunday I was there I had the roast dinner.  I couldnt eat it, it was so disgusting! Soggy and tasteless.

On day 14 I was allowed to go home as my neutrophil count had gone upto 3.2 so I was considered sufficiently recovered enough to be discharged home but had to be extremely careful with food hygiene and avoiding risk of infection for the first few weeks. I was tired and depressed, taking to the bed for most of the afternoon and was very short of breath hardly able to climb the stairs. However gradually everything improved. After my bone marrow biopsy around 3 months post transplant I was told I had a very good partial response as the percentage of abnormal cells in my bone marrow was less than 5% and my light chains were in normal range. I dont really understand why I didnt have a complete response but it was something to do with there being some paraprotein although too negligible too measure.

I had a new immune system.  When I went to see my acupuncturist, Amy Lai, she said I had crossed over to the other side and welcomed me. A beautiful canadian/indian actress called Lisa Ray claims to feel reborn since her stem cell transplant. I think if I looked like her I would feel reborn too!

So what do I feel?

I do feel like I am living a normal life again and like Lisa Ray (although she declined to take maintenance drugs, I didnt have the choice) I am drug free because the NHS wont pay for me to take effective maintenance drugs which have been proven to double the length of remission. Oh well.

Its scary how I have returned to a normal life on the surface. I am back at work, going on holiday, exercising, socialising, planning things (upto about 6 months ahead).  I can almost pretend that I  wasnt diagnosed with an incurable life limiting illness. Last year seems unreal and I dont pass a day without my mind making a connection with some aspect of my illness or recalling some details or incident from last year. Between December 2010 and December 2011 I spent 28 days staying in hospital altogether (kidney failure, diarrhoea and stem cell transplant). Not to mention the numerous hours put in at the haematology day unit with appointments and treatments and all the waiting in between. I suppose it is not surprising that I cant just put it behind me. Now its once a month for Zometa (the bone strengthener) and a three month clinic appointment. I sometimes strangely miss the hospital visits and the care and attention I had whilst there.

So I am going to be celebrating on Saturday, am I one year old in my new life so it is my first birthday or is it an anniversary? Or both!! Whatever it is I want to celebrate. My new immune system is one year old  but is still in its infancy as evidenced by the countless viral infections I have suffered but hopefully like me is getting stronger although my immune system will always be compromised.

I still have to live with the uncertainty of when the Myeloma will return. The standard advice is that it extends remission by 12 to 18 months but I dont know how long the remission would have been from the treatment alone so that doesnt help. There are people I know of who have been in remission for over 10 years and continuing but then there are people who dont even get 12 months before they relapse. The good response I had to the transplant doesnt mean that my remission will last longer. The way I feel now is that I cant believe I ever had Myeloma and I find it difficult to accept that it will come back because I am in good health. I almost look at last year as a gap year, time out to have cancer instead of travelling the world and having a life changing experience but although I didnt travel the world I did have a life changing experience. My life changed irrevocably last year and will never be the same again and now I am trying to inhabit a new normality, a way of being that means that I still try and make the most of life and not take anything for granted but daring to think a little further ahead and make plans for the future.

Frothy Urine

In the weeks before my diagnosis in December 2010, I noticed that my urine was foamy and frothy.  I found out that this is a sign of proteinuria. There was much worse to come.

Proteinuria (/prtˈnʊəriə/ or /prtˈnjʊəriə/; from protein and urine) means the presence of an excess of serum proteins in the urine. The excess protein in the urine often causes the urine to become foamy. Proteinuria may be a sign of renal (kidney) damage. Since serum proteins are readily reabsorbed from urine, the presence of excess protein indicates either an insufficiency of absorption or impaired filtration.

The nurse at my GP practice told me there was protein in my urine when she did the dipstick test. I didnt really know what that meant and didnt worry about it at the time. The dipstick test couldnt confirm what type of protein or how much.

It turned out for me to be not only a sign of renal damage but also of the presence of an abnormal protein known as Bence Jones protein, named after the scientist that discovered it.

A Bence Jones protein is a monoclonal globulin protein or immunoglobulin light chain found in the blood or urine, with a molecular weight of 22-24 kDa. Detection of Bence Jones protein may be suggestive of multiple myeloma or Waldenstrom’s macroglobulinemia.

Bence Jones proteins are particularly diagnostic of multiple myeloma in the context of end-organ manifestations such as renal failure, lytic (or “punched out”) bone lesions, anemia, or large numbers of plasma cells in the bone marrow of patients. Bence Jones proteins are present in 2/3 of multiple myeloma cases.

The proteins are immunoglobulin light chains (paraproteins) and are produced by neoplastic plasma cells. They can be kappa (most of the time like me) or lambda. The light chains can be immunoglobulin fragments or single homogeneous immunoglobulins. They are found in urine due to the kidneys’ decreased filtration capabilities due to renal failure, sometimes induced by hypercalcemia from the calcium released as the bones are destroyed or from the light chains themselves.

The Bence Jones protein was described by the English physician Henry Bence Jones in 1847 and published in 1848

Thumbnail for version as of 05:22, 17 November 2008 This is what it looks like!

When I was admitted to hospital with acute kidney failure,  I had to do all my urine in bed pans so that it could be tested over a 24 hour period, I wasnt told why at the time but now I know they were testing for Bence Jones protein which can only be determined by 24 hour collection.

Over the next couple of months as my kidney function returned to normal having been 10 to 15% of what it should have been at the time of admission and I started treatment for myeloma the frothy urine seemed to come and go. It wasnt every time like before.

My  haematology consultant didnt seem to think it was anything to worrry about but couldnt really provide me with an explanation of why this was happening so she referred me back to the renal unit. I should have had a follow up appointment with them anyhow after I was discharged from hospital. The first time I had an outpatient appointment in December 2011 typically I wasnt having any frothy urine and no protein was found but neither was any real explanation given to me by the young (aren’t they all!) junior doctor. I had a further appointment on 26 June when I saw a lovely more senior renal consultant who took the time to explain to me why I was getting intermittent frothy urine although again no objective evidence could be established.

She told me that when I had acute kidney failure my kidneys were probably permanently damaged

I had intrinsic damage to the renal tubules caused by acute tubular necrosis (ATN), I dont remember what I was told at the time but “renal biopsy showed ATN and on re review a few casts” is on my discharge form. How this works in myeloma is that the tubules are increasingly damaged by the large protein load and large obstructing casts frequently form within the tubules. The combination of interstitial fibrosis and hyaline casts surrounded by epithelial cells or multinucleate giant cells constitutes myeloma kidney.

The myeloma casts are pale pink, pretty isnt it!

The tubules of the kidney can also be damaged simply due to  the toxic effects of these filtered proteins.

So with treatment of prednislone which is a steroid and intravenous fluids my kidney function recovered and then with my treatment for myeloma, the high level of free light chains started reducing and luckily I regained normal kidney function fairly quickly and importantly I have maintained it. I was probably hours away from needing dialysis when I was admitted and I know of people with myeloma in remission who still need dialysis due to the damage caused.

So it seems that as my kidney tubules are permanently damaged and I have a few casts, a bit like scar tissue I guess, which mean from time to time I will leak protein into my urine and as long as the myeloma is under control and the protein levels are not too high then it isnt a problem. Strangely enough I now rarely see it in my toilet at home but do in the ones at work.  It is one of the reasons why I still try and drink 3 litres of water  each day to keep flushing out my kidneys. I was told to drink this amount at the start of treatment to flush out toxins and there is differing views on whether I should still be doing this but at my last clinic appointment my consultant said I didnt have to as during remission I should try and live as normal a life as possible which shouldnt involve going to pee all the time! He suggested 2 litres of water would be fine and so now I am being a little more relaxed about it.

However seeing frothy urine is always a reminder of my condition and the fragility of my situation.

I am however hugely appreciative of just how normal my life is right now 11 months post transplant, apart from the frequent infections I have no aches and pains, no physical limitations, no fatigue (no more than anyone else that is!), just frothy urine and curly hair!

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

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Joggers buttock

After doing some much needed weeding in the garden a few days ago I pulled a muscle in my left buttock which caused almost instant pain and disability.  As I limped back into the house in agony my immediate thought was that I wouldnt be able to run in the Manchester 10k event on Sunday however a few co-codamol left over from last year and a hot water bottle under my bum has helped to ease the symptoms..  you may have heard of joggers nipple but you probably havent heard of joggers buttock!  I am hoping that I will be able to continue with the 10k on sunday but I feel that my performance will be compromised and I may take two hours instead of the 45 minutes I was aiming for!   Needless to say I will run through the pain barrier as I do not wish to let my sponsors down!

I am doing this run to raise money for Myeloma UK  which I have already mentioned on my blog and I think there is a link to it.  It is the only charity in the UK specifically for Myeloma and provides information and support to patients, families and  caregivers, raises awareness of this rare cancer, funds research and clinical trails etc etc.  On a personal level I have benefitted from having a peer member to chat to when I was first diagnosed -big thanks to Debs who also has an excellent blog

www.debsjourneywithmyeloma.wordpress.com

and .. a specialist nurse to speak to on the helpline,  have had lots of useful leaflets and booklets on the different treatments and aspects of Myeloma produced by Myeloma UK, regularly check out the latest news on their website and keep in touch on the forum with other myeloma patients.

I am doing really well with sponsors but always need more so if you havent already sponsored me and would like to please go to my just giving page where you can donate online or contact me and I will put you down on the sponsorship form and corner you at some point for the money. I do hate asking people for money but according the fundraising pack that Myeloma UK sent me I should have fun and never feel guilty about asking people to sponsor me because I am doing something that is worthwhile and Myeloma UK relies on the support of people like me. Oh right then!

www.justgiving.com/wendyduffied

There are some funny pictures of me and my favourite track to listen to on the run.

So I intend to have fun on Sunday (if running can be called having fun!), when I did it in 2009, I did enjoy the day even though it pissed down with rain for the last 10 to 15 minutes of my rain and I got absolutely soaked. It is a good atmosphere and also a chance to see some top athletes (other than me of course) and a few corrie celebs too! My parents are coming to cheer me on and I am meeting up with some other people running to raise money for Myeloma UK as well. As a treat afterwards I have booked a table at Jamie Oliver’s new restaurant on King St.

After I was diagnosed, I nearly threw out my sports gear doubting that I would ever play tennis (which I so love), squash or go running again.  These are high impact activities and I thought that it would not be possible even in remission because myeloma weakens the bones making them more vulnerable to fractures. I took up some more gentle pursuits such as walking and yoga .  Yet here I am 16 months later running 6 miles on Sunday and playing tennis when I can find someone to play with. I have been told by my consultant that there is no reason why I cant do these activities and my bones are pretty much as normal as anyone else.  I was lucky I guess that I didnt present with bone damage like many others do when diagnosed with myeloma to the extent where they have fractures and lesions requiring radiotherapy and fixation. My weak point was my kidneys but thats another story.

Anyway I see the run on Sunday as a way of celebrating my remission and my return to health. I intend to try and make the most of it whilst it lasts.

PS Good Results!

I forgot to mention in my last post – Another Cold , that I had good news from my clinic appointment on Friday 13th April when I phoned up my haematology  specialist nurse  a week later to get the results of my blood tests.

My light chains, both Kappa and Lamba (that is how my abnormal cells are tested)  were within normal range and the ratio was the lowest its ever been so I can breathe a sigh of relief and relax for another 3 months until the next test. So I am still in remission 7.5 months post transplant, feeling well (apart from the cold) and back to the sort of energy levels I had before diagnosis although it wasnt the myeloma that really made me ill, (apart from the kidney failure) it was all the treatment last year.

 

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.

Clinic Appointment on Friday 13th !!

My next clinic appointment is on Friday 13th April (hope that is not a bad omen) and I will get the results of my blood tests which I had done yesterday.  I have the serum light chain test to measure my kappa light chains (which in my kind of myeloma were the ones that were abnormally high, over a 1000 when I was diagnosed, the normal range being around 3 to 19) and the results normally take about a week to come through.

Post transplant I have a clinic appointment once every 3 months when I see a haemotology consultant and have a light chain blood test so they can monitor my light chains.  In addition I have a bone strengthening treatment called Zometa once a month ( I need it after all the falls I have been having!).  In terms of medication all I have to take is Calcichew which is a calcium and vitamin D supplement.  I choose to take a vitamin B supplement, cod liver oil and turmeric capsules.

I am starting to feel anxious.

I am now 7 months post autologous stem cell transplant (autologous means my own stem cells).  Day zero to me was 1st September 2011.  They call it day zero because that is the day that your immune system is rescued having had a huge dose of chemotherapy the day before called Melphalan*.  If I hadnt got the infusion of the stem cells back on day zero then I would have died!

The idea of the procedure is to kill off any residual myeloma following  treatment and then to rescue my immune system with my previously collected baby stem cells.  Light chain tests I have had since then show my kappa light chains were within normal range so thats great news and I hope it continues as long as possible.  They have slowly risen since my transplant but are still within the normal range.

If the myeloma comes back within 12 months of my transplant I believe the transplant is considered to be a failure and although I have more stem cells stored in a freezer (not my freezer!),  I wouldnt be offered another one because the first one didnt work.  I would have more treatment to knock back the myeloma and then be offered a transplant from a donor.

Shortly after my transplant and actually even before it my consultant was recommending that I have a further stem cell transplant within 6 months of my first one.  A different type of transplant called a reduced intensity conditioning transplant or a mini allogeneic one. With this one you have less chemo but the stem cells are from a donor, the idea being to give you a new immune system. There is a significantly higher risk of dying, a longer period of recovery and potential long terms problem caused by chronic graft v host disease. The perfect donor is your sibling, but unfortunately my brother and sister werent a match (there is only a one in four chance of a sibling being a match). After that then a matched unrelated donor is searched for via the Anthony Nolan Register, more of which later on.  I was told that the aim of this transplant in tandem with the auto is to prolong remission for as long as possible in younger fitter patients. I was also told that I had a chromosomal abnormality which meant that I was more likely to relapse earlier. I was shocked to be given this news and didnt feel like celebrating the fact that I had a very good partial response to my transplant as I had a decision to make about having another transplant.

After lots of deliberation I decided to have the mini allo only to find out that there was only 1 potential match on the bone marrow register (that was by analysing his saliva sample) and when his blood sample was tested he was only a 7 out of 10 match in terms of tissue typing.  My consultant did not consider that was a good enough match to go ahead with the transplant (only 10/10 would do).  So after all that it couldnt go ahead and I felt a mixture of relief and disappointment.  Having initially told me I had quite common tissue typing, my consultant said on closer anaylsis it was quite rare and I have since found out that out of 26 million donors on the register world wide, only that one was a potential match for me.  Naturally I feel quite despondent about the chances of someone new coming onto the register that would be a match for me.  So this puts me in a situation where if I relapse before 1st September 2012 then I have no options other than treatment which I am or have been extremely sensitive too.  So not only am I a sensitive type, I am also an extremely rare type!

So my mission is to spread the word about the Anthony Nolan trust and get everyone I know who is over 18 and under 40 (which isnt many) to register online and then send off some saliva.  If you know anyone or are eligible yourself please check out their website

www.anthonynolan.org

Anthony Nolan is a pioneering charity that saves the lives of people with blood cancer who need a blood stem cell, or bone marrow transplant. In 1974, Anthony Nolan’s mother, Shirley, set up the world’s first bone marrow register to match donors with people who desperately needed a transplant.

Now, every day, we help two people in need of a lifesaving transplant by using our register to find remarkable donors who have matching stem cells, or bone marrow.

We are a UK charity with international reach. We carry out world class research into stem cell matching and transplants to improve outcomes for all patients.

WHY JOIN?

 We’re passionate about saving lives. It’s something we have in common with our donors, who regularly tell us that it’s the most rewarding thing they’ve ever done.

For someone with a blood cancer, a stem cell transplant may be their only hope of recovery. We make sure that when we do find a match, we’ve done everything to ensure the procedure is a success. That’s why we have such strict criteria for potential donors, in terms of general health and medical history. To help us work out if you’re suitable, please fill out our application form. It takes less than 10 minutes to apply.

Are you fit to spit?

As I am 50, I have decided to try and recruit 50 people to join the register this year, its not many but its better than none.  It costs the trust £7.00 to arrange for the person to go on the register, collect the saliva sample etc and I have decided to donate £7 to the trust for each person I have or my friends on my behalf have managed to recruit so if you do manage to get anyone to register let me know.

In the meantime I will try not to worry, I am looking after a friend’s dog, Lottie pictured below, this week which will be a great distraction, can eat alot of chocolate over the weekend as it is Easter, will enjoy spending time with my family, including my gorgeous and extremely entertaining 5 year old niece and  hope I get good news next Friday.

*Melphalan hydrochloride (trade name Alkeran) is a chemotherapy drug belonging to the class of nitrogen mustard alkylating agents. The nitrogen mustards are cytotoxic chemotherapy agents similar to mustard gas. Although their common use is medicinal, in principle these compounds can also be deployed as chemical warfare agents. Nitrogen mustards are nonspecific DNA alkylating agents. Nitrogen mustard gas was stockpiled by several nations during the Second World War, but it was never used in combat. As with all types of mustard gas, nitrogen mustards are powerful and persistent blister agents and the main examples (HN1, HN2, HN3, see below) are therefore classified as Schedule 1 substances within the Chemical Weapons Convention. Production and use is therefore strongly restricted.

During WWII nitrogen mustards were studied at Yale University and classified human clinical trials of nitrogen mustards for the treatment of lymphoma started in December 1942.[1] Also during WWII, an incident during the air raid on Bari, Italy led to the release of mustard gas that affected several hundred soldiers and civilians. Medical examination of the survivors showed a decreased number of lymphocytes.[2] After WWII was over, the Bari incident and the Yale group’s studies eventually converged prompting a search for other similar compounds. Due to its use in previous studies, the nitrogen mustard known as “HN2″ became the first chemotherapy drug mustine.

Falling down, off and over…

I had an incredible holiday in Swedish Lapland.

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

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

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

and how am I?

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

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

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

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

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

 

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

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

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

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

Skin Rash

Since my transplant I have been more prone to itchy and sensitive skin, particularly in the early days on my face and neck which would sometimes drive me insane. Also my eyes are red and itchy at times. Eye drops help lubricate and ease the soreness. This is quite common post transplant and could also be a post menopausal symptom.

However when I went on holiday to Tenerife within a couple of days I developed an all over skin rash (apart from my face). Have thought of several possible explanations:-

1. The massage oil used by the chinese woman who gave me an excellent massage on the beach.

2. The cheap factor 50 sun cream I bought over there because mine was confiscated at the airport as being over the 100ml size (what a rip off that is!)

3. Prickly heat rash – never had before but hey I am more sensitive now!

Whatever the cause the itching was chronic and I was quite often to be found rubbing my back against the artexed walls of the apartment to get some relief.

The friends I were with were also suffering with hay fever and runny eyes so they went to a pharmacy to buy some anti histamines and came back with some that had cost 13 euros which seemed very expensive. We all took them for our various complaints and after a couple of days none of us had noticed any relief of our symptoms. Upon further examination of the packet it turned out that these tablets were herbal remedies very cleverly packaged as pharmacutical drugs!  So much for herbal remedies.

Skin rash aside I had a nice relaxing time in Tenerife, swimming in the sea and enjoying warm sunshine.  Some photos below.

When I got back my rash started easing and I am left with some chicken like skin on the affected areas. Not very attractive!

It took me back to about 12 months ago when I got a severe skin rash halfway through on my first cycle of treatment . I had red blotchy itchy skin on my face, lips, inside my mouth and body. I came off thalidomide, allopurinal (an anti gout medication) and the anti biotics I was taking for a urine infection as the doctors weren’t sure what was causing it.

I was off treatment for about 4 weeks whilst my skin rash was so bad. My consultant wanted my skin tone to go from red to pale again before restarting. When I restarted treatment I was on a lower dose of thalidomide but after a couple of weeks I was complaining of so many side effects that I was taken off the thalidomide and consequently the myeloma XI trial.  I was very disappointed and felt that my haemotology consultant thought I was a bit of a wimp for not putting up with the side effects and taking the medicine.  She reassured me that she felt that coming off thalidomide was the best thing to do and although I didn’t tolerate it very well, it had knocked the myeloma down to a point where my disease wasn’t active.  All this and I hadn’t managed to complete two full cycles!

When I think back to that period, it was hellish ….. the side effects, splitting up with my partner, the shakiness due to mental anxiety and the drugs, I could hardly use a pen due to my hands shaking, the nerve pain and I could barely walk due to low back pain, the mental confusion and lack of concentration.  I don’t recognize myself as that person now,  I didn’t at the time either,  it was a surreal experience, like being trapped in a nightmare from which I could never wake up.

Before diagnosis, I had never been seriously ill, never been in hospital, never really experienced pain and was needle and hospital phobic.  I used to feel slightly faint just visiting someone in hospital!  In other words I was a bit of a WIMP!!

Now I inhabit with ease,  a whole new world of injections, needles, biopsies, hospital appointments and stays.  I know the ropes, I can look at my blood being taken without feeling faint, I have heard the words “sharp scratch” hundreds of times without worrying what’s coming next.  I am called words like “brave” and “strong” by hospital staff, friends and family.  I don’t think I am especially brave as I have no choice but to go through whatever is necessary to keep myself alive but neither do I think I am a wimp anymore!!

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