I am going to do the Manchester 10k run on Sunday 20th May and I hope to raise money for Myeloma UK, the only UK charity specifically dealing with Myeloma.
“Myeloma UK informs and supports people affected by myeloma and helps improve treatment and standards of care through research, education, campaigning and raising awareness.”
It has been invaluable for me and my family. They organise info days, arrange local support groups and host a discussion forum for patients and carers. They also have a specialist nurse available to talk to about any aspect of your illness or treatment.
I did the run in 2009 to raise money for Mind after a close friend of mine who had been struggling with mental illness for some time took her own life, but then I was relatively fit. I found the training for it, those runs in the wind and the rain over the winter months after she died a useful tool for dealing with my grief and shock.
3 years on and I am running again (well hardly running, jogging slowly is more accurate at this stage!). This time around how different life is for me. My friend’s suicide was the toughest thing I had dealt with so far, it was certainly the most difficult, saddest and most shocking event up till then in my relatively emotionally stable world.
Now what am I running for and why do such a physically demanding activity (for someone with myeloma), only 8 or 9 months post stem cell transplant?
I am not entirely sure but it is something to do with wanting to be free, in control of my own body and mind and I know it has so much to do with wanting to be normal, back into the life I had. Doing the 10k would prove to me and the world that I was ok, not a myeloma sufferer, not a patient or somebody with cancer. The reality is that I will always be that because a relapse is inevitable as myeloma is currently incurable, I just dont know when that will be. I got a harsh reminder of how fragile my remission is when I read about the Basil Skyers Myeloma Foundation
The Basil Skyers Myeloma Foundation is run entirely by volunteers and was established in memory of Basil Skyers who died of Multiple Myeloma on August 2, 2010. The charity aims to provide support of a non medical nature for people living with Multiple Myeloma, and to raise awareness about this condition.
Basil was diagnosed with Multiple Myeloma in 2008. After receiving intensive chemotherapy and a stem cell (bone marrow) transplant, Basil was actively supported by his family, his employer (Dixons Retail PLC) and his friends. The support provided to Basil fitted with the rhythms of his changed life by taking account of the physical aspects of his condition, and the social implications of his absence from, and his subsequent return, to work.
Whilst Multiple Myeloma is the second commonest form of blood cancer of which there are 4,000 new diagnoses each year in the UK, often the first family, friends or colleagues hear the words Multiple Myeloma is, as in Basil’s case, at the point of diagnosis.
It is a devastating illness that attacks the blood plasma cells and bones, causes intense pain and major problems with mobility and dexterity. Due to red blood cells in the bone marrow where blood is produced being crowded out by cancerous Myeloma cells, extreme fatigue, breathlessness and confusion are common features of the condition. There are a number of treatments for Multiple Myeloma but currently, there is no cure and the average life expectancy from diagnosis is between 3 to 5 years.
The average onset age for Myeloma is 60+ but that picture has begun to change dramatically in recent years, as more and more young people in their 30s and 40s, like Basil, are being diagnosed with this condition.
I have more or less quoted verbatim from the website because it describes so well the nature of the disease and the impact that it has. I felt scared and depressed reading this, this guy was younger than me when diagnosed, has had the same treatment as me and died two years later. How can life be so unfair? Rationally I know, as I am always being told, that the disease is so individual that I cannot compare myself to others. It seems that with any cancer there are degrees of unluckiness (fairly bad,bad,awful,worst etc etc) but I have already survived the bottom range of the survival statistic ie the 12 month to 5 years one that I was given upon diagnosis.
Am I lucky? I dont feel lucky and I dont feel like some people in remission seem to ( the glad to be alive, jump out of bed with joy brigade) but I do try to find something in each day to enjoy or to appreciate. Today it was seeing the David Shrigley exhibition in London, some of his drawings and cartoons made me laugh out loud, then coming back on the train, seeing the last of the snow on the fields, gazing mindlessly out of the window and tonight going to a friend’s for a roast dinner so just for today, life is good!
Yesterday I saw the practice nurse at my GP surgery to start a programme of re-vaccinations following my stem cell transplant which wiped out all my immunities because of the high dose chemotherapy I was given prior to getting my own stem cells back. The, chemotherapy destroys the good and bad cells in my bone marrow so all the immunisations I had received in my childhood would have gone too. The revaccinations should start 6 to 12 months post transplant although I am just 5 months post.
So yesterday I had diptheria, tetanus, polio and HiB which was a combined course administered in one injection, pneumovax (pneumonia) and meningoccal vaccine so a total of 3 jabs as I have already recently had the flu jab. I have to go back in a month’s time for the second combined jab and then in two months’s time for the last of the course.
The letter I recieved from the transplant unit says that “exotic travel” should be avoided in the first year post transplant as some of the vaccines such as Yellow Fever and Cholera are not safe/not recommended presumably because they are live vaccines. I dont know what is considered exotic travel but guess that means most of the places I would love to go to such as India, South East Asia and parts of the African Continent but it is not a big deal to me as I am lucky enough to have gone to lots of “exotic” countries in the past. I am quite happy to contemplate travel to parts of Europe where I havent been before and have already got holidays arranged to the Canary Islands at the end of February and Swedish Lapland in March, neither of which count as exotic but the latter for me will be the fulfilment of a long held desire to go to this part of the world and experience the Northern Lights which I regard as very exotic!
Anyway today I have aching arms and feel shivery and tired, an after effect of the vaccinations I think which hopefully wont last too long. I get so down and anxious when I dont feel well and there is always that fear at the back of my mind that whatever I am experiencing is the myeloma coming back. I wrangled with myself about leaving work after doing a half day today because of not feeling well instead of sticking it out for the whole day. This is the conflict between wanting to be back to normal and accepting that I am not going to ever be back to normal and trying to find a balance for both body and soul.
The upshot is that I did come home , have written this and am now going to curl up under my duvet with a cup of hot lemon and honey and a couple of paracetomol for the afternoon and hope I feel better for it!!
A few days ago, I dreamt that my hair was falling out in clumps and that I had to ask someone to shave it off for me. It was a horrible panic stricken dream that I doubt I would have had before December 24th 2010 which is when I was diagnosed with multiple myeloma and my world changed.
What is multiple myeloma?
Yep, that is the first question I asked because I had never heard of it. I was in the acute renal unit being treated for acute kidney failure at the time. After a bone marrow biopsy the day before, a Consultant Haematologist, a Macmillan specialist nurse and the Haematology Registrar came to visit me on the ward and the curtains were drawn for the second time around my bed. When I heard the word Macmillan I knew that meant I had cancer and thought I was going to die soon because my experience of Macmillan nurses was that they helped patients at the end. I was told it was cancer of the bone marrow and that it wasnt curable but the discussion quickly moved on to it being treatable and the treatment options.
The consultant patted my hand and told me I was very young to be having it and tried to be comforting. I think I asked the classic “how long I have I got” question and am a bit hazy about the answer but recall 12 months being mentioned
Myeloma is a cancer that affects cells in the bone marrow called plasma cells. As the cancerous plasma cells fill the bone marrow, you are not able to make enough normal blood cells. This can lead to anaemia, bleeding problems and infections. Other symptoms include bone pain, fractures due to bone damage, and kidney damage. In many cases, treatment with chemotherapy and other treatments can control the disease, ease symptoms and prolong survival for a number of years.
And so that is how the nightmare began and I was forced to join a world that was previously unknown to me, my family and friends. A society which revolves around treatment, side effects, blood tests, chemotherapy, endless visits to hospital, sickness, hair loss, and bags of medication. And a new language to learn……………
myeloma light chains refractory disease
relapse remission very good partial response
stem cell transplant risk of mortality
kidney function platelets para proteins
Just to mention a few
So going back to the bad dream I had last night, this dream came true although my hair didnt just suddenly fall out in clumps, it was a gradual process which started with thinning whilst on my initial treatment (caused by the chemotherapy element of the treatment), then the high dose chemotherapy I received prior to my stem cell transplant on 1 September 2011. I had my hair cut short prior to my transplant by a lovely woman hairdresser in Olhao in Portugal. She couldnt understand english and I couldnt speak any portugese but I said the word cancer and gestured to my head and she then understood what I wanted, and afterwards kindly said I looked beautiful and that she would pray for me! I got a crew cut and it looked good and stopped my hair from clogging up the sink and the shower.
Judge for yourself whether I looked beautiful!!
Then when I got home from hospital after the stem cell transplant the crew cut was looking decidly more patchy so I asked my mum who was staying with me to shave it all off with the clippers a friend had bought me for this purpose.
I felt emotional but I had been preparing for it and to finally get it done was a relief. It took a long time as my Mum didnt want to cut my head (as my platelets were low and it might never stop bleeding!) I was pleased to find out that I have quite a nice shaped head although a little lumpy in places.
Having no hair almost felt like not wearing any clothes. I felt stripped bare for all to see and was conscious of how much our hair and hair style can give you an image and a cover that when you dont have any leaves you feeling exposed to the world and seen as a cancer sufferer I guess.
Now it is growing back again and at the crew cut stage and to my delight is slightly wavy. I was told that my hair might grow back maybe a different colour or curly and as I have dead straight hair was rather hoping for the latter and yes a slight wave can be detected! Cant wait to see what it might look like when it grows a bit more.
So having the dream a few days ago several months after it actually happened is a reminder to me of how significant the experience of hair loss has been for me and in some ways is the defining image of a person with cancer. At some level there is a part of me that refuses to accept that I have cancer and can no longer have the life I had before cancer. My challenge now is to learn to live a new way.