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Eva 11 years, 10 months ago.
Hi everyone,
I have only recently been diagnosed with myeloma after 6 months of various tests and visits to Gp's, Physio and Consultants. I am only just turned 50 and did not realise that this disease affects so many young people. As with most people I am trying to come to terms with this diagnosis and how it will affect my lifestyle. I am already on chemo treatment and am at present monitoring all the side effects of the cocktail of drugs! I have never in all my life suffered with any major illnesses or taken any medication-even paracetamol was a rare thing to take, so I do feel like I have turned into an ill person overnight. I have always been very healthy and fit, dont smoke and eat a healthy diet (i.e Italian family so everything has always been home cooked with fresh ingredients). I do feel that I have taken good care of myself but now realise with the best care in the world this disease can strike at anytime and affect anyone. I have 3 children, my youngest being 13, I am very aware of how it feels to lose a parent as I lost my mum to ovarian cancer when I was just 13 and it was a very distressing time so I look at my daughter and pray that my disease might not be so aggressive and after reading all the literature on myeloma there are really good results and although not curable is a very manageable disease. I really am a novice to this disease though and am happy to have found this site. I have read some of your messages and the first thing I feel is that I am not alone and that there is great support network out there.
I feel fortunate that I know all of my medical team having originally worked as PA for the haematologist who is now treating me! I have worked in a hospital environment off and on for 20 years and and so I know have a better insight than most. They are a lovely team of people and very supportive although as usual within the NHS under-resourced and stretched. I lost my husband in my 40's and decided to train as a counsellor which I did for 5 years and then returned to the hospital, I have always worked in a caring profession. My problem is I have always been the one to care for others and I dont really know how to be a patient or accept help and support from others, Im finding this hard. I am now in a very happy relationship with a lovely supportive man but I think he also is struggling to come to terms with this disease as we just dont understand it fully. I hope that I haven't bored anyone silly but I would really appreciate support and to hopefully along the way make some new friends in similar circumstances. I would also like to offer any support I can or help to others if I can.
Thankyou everyone for your time and look forward to hearing from you.
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Hello Maria,
I came across your message today and felt compelled to reply to you as hopefully I can pass on some of my experiences which I hope that you find of benefit.
I am reltively young (under 55)and was diagnosed in May of this year. My diagnosis came to light as I had ongoing back problems which was initially diagnosed as requiring physio – this went on for 6 months before eventually a sharp eyed GP referred me for an MRI scan where vertebrae fractures were discoverd, which then led to blood tests and eventually MM diagnosis. I then went through 4 cycles of initial CDT treatment followed by a stem cell transplant 11 weeks ago. I am now recuperating at home and am feeling good.
Like you, I have found the hardest part of this getting my head around the diagnosis, the likely outcomes, the potential for remission and trying to predict the future.
For what they are worth, these are my tips based on my personal experience over the past 7 months:
1. Generally be a good patient and do as your told. However, try to read between the lines and be absolutely prepared to ask the questions that you need answering.
2. Realise that MM is not a cancer where the outcomes can be easily predicted. Everyone is different and the course of treatment is very much down to how you respond.
3. Try to speak to as many people as possible, other patients, doctors, your care team etc with a view to forming your own opinions on how you think this thing may play out over time. I have met patients who have been in remission for over 10 years – so treatments are definitely working – but contrast this with other patents who are less fortunate. This is why predicting the future is so difficult.
4. Try to build a picture of MM through research as much as you can, just to give you a background against which you can assess your own development and to help you keep things in perspective.
5. Be open and honest with those closest to you. Front up to MM together and tackle it head on and try to plan your future as best you can.
6. Understand the treatment that you are being recommended but always ask 'what are the alternatives' so that you have an informed choice.
Finally, it is very reassuring to know that senior people involved in MM are now openly talking about MM being 'cured' in some patients given that they have been in remission for so long.
I hope that this helps and please feel free if you want to ask [u]any[/u] questions.
Regards & good luck!
Dear Maria,
You are remarkably well placed in some senses of the word, and yet, it is a difficult place to be in. Pilgrim's post summed up many issues admirably.
I was diagnosed when I was a very fit and (apparently) healthy 52 year old. I didn't drink or smoke and ate well, so it was unexpected. I did have a mother who had died of cancer and who'd been diagnosed at the same age as myself.
It's four and a years since I received the news I had myeloma. It's certainly altered my life a lot as I haven't felt well enough to work as a secondary school teacher. It's been a stressful journey for my husband and myself as we had to learn a lot very fast, and at the back of our minds there has been the fear that I mightn't respond well to any of the treatments. Fortunately, my illness has been responsive; today I have been out shopping since I'm making lunch for a friend tomorrow. I look well and am able to do many things. In the last month my husband and I have been to Rome( work trip for him), to London – to see my onc- and I've gone to Edinburgh on my own to meet some overseas visitors. I've attended a film festival last week and am still making new friendships. More importantly, I've been able to do some things for my sons who are young adults working/studying in Shanghai but still really needing their mum.
However, I don't feel that I should conceal that there have been very major readjustments to make. I had four months of intital chemo, then a stem cell transplant which lasted for about two and a half years. Then a sudden shattered humerus which accompanied relapse. Since then I've had periods on steroids and Thalidomide, and now, just Thalidomide. Each phase had different potentials and different consequences. There have been times when I've felt unwell from the treatment. The induction chemo had me in bed for a number of hours a day. The transplant took two or three months before I could be very active again. Whenever I'm on steroids, there's a withdrawal period each cycle during which I tremble, can't sleep properly and have trouble walking. I have chemo brain even now and can't remember words sometimes. It's been important to adjust very fast to what's possible and to take advantage of that. For example, I've written about this before – when I was really bedbound I figured out I could still read and discuss what I had read with my husband. When I was able to be up for a few hours, I set myself challenges of cooking new dishes and even trying to share meals with neighbours or friends. It's been a constant process of re-invention. When I was physically frail I'd try and develop new skills – since my relapse I've done over thirty new paintings and a great deal of photography – some of it quite experimental. I suppose I'm saying that I have tried to gain new potentials to balance out the losses. When I was well I taught Maths and English and loved to meet random members of the public. I miss having my own income and career, but now I'm able to make contact with people who are interested in my work as an artist. My identity seems to be in a constant state of flux.
As for the emotions surrounding the diagnosis- well I don't expect to live to an old age and a part of me is grieving and angry. However looking back at the last four and a bit years, it's been very important to sound positive, to have plans and to enact them. If you don't, the people around you will really suffer, and relationships may be compromised. By all means confide in others and share dark nights of the soul, but this can be balanced with an excitement about life and a love of what you're doing, as if you're still twenty-four and have all the time in the world. If you can pull that one off, at least sometimes, then the people around you will suffer less and you are likely to have a better time. If I survive a few years longer then I will have had myeloma for about a fifth of my life – surely that's a big phase, one that I want to treasure and share with others.
I'm including a photo taken four weeks ago in Rome. My husband is on the right, I'm in the middle, and on the left is an Italian girl at whose home we stayed for a few days.
Eva
Hi Eva, I am using a tablet to type this so I hope I don't make too many typos!
I came across this site by accident really and read your story. I known that you wrote it at the and of last year but I really wanted tks give you some positive encouragement.
I was diagnosed in may 2005, two days after my 44th birthday, like everybody else I was devistated! I am now four months away from being 7 years in remission and leading a very normal and busy life. I have two young boys 11 & 13 and was working 3 days a week until I was made redundant. I have returned to college as a mature student doing a business course.
Obviously, I don't forget about mm but it doesn't consume my thoughts, if anything it reminds me to lead a healthy lifestyle. That doesn't mean that I don't drink & eat the wrong things but I do make an effort to eat a normal healthy diet fir me and the boys.
After I was diagnosed & had the stem cell transplant I started reading books by people who had cancer and the changes they had made to their life. They all had a common thread …. eat fresh produce, no processed foods & eat organic as much as possible. Oh I nearly forgot, drink plenty of water. Many books recommend juicing, which I have been ddoing for years, it is best best way to state the day.
I have never felt healthier and enjoy cooking (something that I had no interest in before). Because I look after myself better now I am also looking after the boys better.
I hope this gives you plenty of encouragement and if you have any questions I would live to answer them.
Ann
Hi
It is so nice to see such positive reply,s to Mari.No matter how many people tell you there is light at the end of the tunnel,you find it hard to believe until you can see it for yourself plus we all know how this illness can change to become a fight for your life.no matter how old your children are,you still worry how things will turn out,even though we know life will go on.
It is nice once you have remission to lock Myeloma in a cupboard ,and in our case get it out every 2months,look at it and wait for the results,so no matter,were you go or what you do,you wait for it to find you.it does give you a better sense of how valuable life is,also what is important in your life.This gives you new goals and you never put anything off for tomorrow.
We might not have the years we thought we had,but the years that we do have are not being wasted,we cram as much as we can into the time between those 2 months inter fills .
Tomorrow will take care of it,s self,you cannot change it,so why worry about it,look at today and make the most of it,even if it is just picking up the phone and telling someone how much you love them.Eve
Dear Ann,
I'm delighted you're doing so well.
Also glad you eat healthy food and have embarked on new ventures. Good to hear from you.
Best,
Eva
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