Joan S
Posted by

Living with myeloma

Joan S
Posted by
21 Mar 2014

In February 2006 just as I was leaving for work I sneezed and immediately felt my back. I thought I'd pulled a muscle and as it got worse went for physiotherapy. Initially this seemed to help but the pain increased and I was on the maximum dose of over the counter painkillers. I went to my GP who sent me for a back X-ray. The X-ray showed two collapsed vertebrae and a 'highly paretic' back, i.e. osteoporosis.

Shortly after I saw an orthopaedic consultant, who immediately arranged for admission in order to establish what was happening. I was in for a month and had every form of scan from MRI to radio-isotope to CT and X-rays. The consultant could not find the cause and brought in a rheumatologist who requested a urine test, a Bence Jones test. A month later I came to a clinic appointment to see the rheumatologist who informed me that I had myeloma. Along with majority of the population my husband who was with me had never heard of it and I only vaguely as at that time I was a GP practice manager.

Just over an hour after being given the diagnosis I was seeing a consultant haematologist and a few hours later I was undergoing a bone marrow biopsy. I was told to come back to clinic the following week with all my questions and I was prescribed a chemotherapy regime. Ten days after starting chemotherapy I felt unwell and contacted the haematology nurse who asked me to come and see the consultant. To my amazement he admitted me and the following morning it became obvious that I'd gone into renal failure.

I was transferred to the high dependency unit and as soon as a bed became available was transferred to the high dependency ward at the local renal unit. I started haemodialysis and following a kidney biopsy, was told the damage was permanent. Amazingly a few weeks later they thought that some kidney function was returning and a month later I was discharged without dialysis.

Almost a year after being diagnosed with myeloma I had a stem cell transplant. In between I'd had various infections and from the first hospital admittance in March 2006, I'd had a total of 17 weeks in hospital. As a result I gave up work and took early retirement as did my husband Mel as he found it hard to cope with running a home, looking after me and a full time job.

Just over a year after my transplant, a routine renal clinic appointment detected protein in the urine. Another kidney biopsy confirmed that this time my kidneys were failing and in September 2008 I commenced on peritoneal dialysis.

Not knowing anyone with myeloma felt very isolating and the haematology nurse put me in contact with another patient. With the support of the haematology nurse we established a support group - North Manchester and Bury Myeloma Support Group. We meet every six weeks and have speakers on a variety of topics to help people cope with myeloma, hold social events as well as doing events to raise awareness of this rare cancer.

In order to increase awareness I give talks to student nurses and those on palliative care courses at Manchester University on my experiences and I am contributing to a book too. As a result I was recently awarded 3rd place in the International Journal of Palliative Nursing 'patient of the year'.

I am fortunate that the stem cell has worked and I am still in remission. I am on dialysis each night but am free during the day and lead a full life. Prior to my illness I was very fit and did a lot of cycling and walking. Initially I was very weak and even used a wheelchair if we went shopping. However I tried to build up my strength and now do tai chi, Zumba and more recently took up cycling again, although I do much shorter distances. I also manage to get on holiday three times a year and the wonderful NHS arranges to send the machine and fluid I need to the hotel.

I feel very fortunate to have received the care I have and in the last few months I have started as a volunteer at the local hospice.

If it wasn't for the research that is undertaken looking at how best to treat blood cancers I would not be here today. I am grateful for all the progress that has been made in recent years in the treatments that have prolonged my life and those of fellow sufferers. Without that research those unfortunate enough to be diagnosed with myeloma would in effect have been issued with a death warrant.

Comments

Anonymous
10.09.2014

i have just recently foynd out my 79 year mother has this type of cancer she been refered to a specialist is it possible for the cancer to be dormant or was the dr candy coating it thanks worried daughter helen xxx

Anonymous
10.09.2014

Hi,

With myeloma there can be initially smouldering myeloma whereby the illness exists but there are no real symptoms and no treatment is given. The procedure is to 'watch and wait' and this uncertainty for some is stressful. In my case my consultant felt that the myeloma had probably been a rapid onset.

The difficulty with myeloma is that it is a very individual cancer. No one person seems to have exactly the same experience as anyone else.

Given your Mother's age I doubt she will have a stem cell transplant as this is a very aggressive treatment and not normally given to people over 70 unless they are very fit as it is felt it would be too harsh a treatment for older people. However there are lots of treatment options available other than stem cell transplants.

In my experience haematologists are very good at answering questions so I would suggest that next time you see the consultant you ask them any questions about your Mother's condition.

I wish your Mother well

Regards

Joan

11.09.2014

Hello
I am so sorry to hear that you have recently found out that your mother has Myeloma. It is possible for some people to not display any symptoms at all or some very vague non specific symptoms such as aches and pains, making diagnosis more difficult in some cases. It’s good to hear that she has now been referred to a specialist, and I would encourage you to ask them for more information about how and when she was diagnosed, and any specific medical questions you and she may have.

You may find it helpful to read our patient information booklet on Myeloma, which you can find here; http://www.leukaemialymphomaresearch.org.uk/information/myeloma/myeloma/...

Wishing you both the very best,
Victoria
Patient Engagement Manager

Anonymous
22.01.2015

Hello

I'm desperately trying to get my doctor to look into this for me. I am unfortunate in that I am not white and so things a 10 times harder to emphasise when you are unwell, without being told you have anxiety or - literally in my case - that you are simply stressed out or dealing with a mental disorder. This is the general expereince when you are of a certain ethnicity.

I have strange sypmtoms that I have tried so hard to explain and in order to give me piece of mind and to simply rule out certain things the test they COULD do they simply refuse to do. The doctors go by blood tests and it seems near impossible to explain that everything is not automatically diagnosed by blood tests alone. I managed to get an ULtrasound of my bones and an x-ray but that is all.

I am in my early 30's and so everything is ruled out. Then when you ask out desperation for a certain scan - again in my case, you are told that there is no such thing as a SPACEHIP like machine to scan your body?!!

No one believes the rubbish I've been through with the doctors, all types of racism and cynical behaviour that is hard to believe.

I am almost always in pain. My bones hurt, my ribs and now the lower shin bone then I feel as though by leg want to shatter.

I cough up sputum now and still I've getting no where - nothing!

I need help speaking to a pyshichan that hears me and doesn't ignore simply for being the race I am. my aunt passed last year from neck cancer, they ran numerous blood tests on her, she was in her late 40's, and although she fought and fought - even worked as a radiologist - to state something was right they refused to do 'proper' tests on her till it was too late. That is the reality and I now feel I am dealing with the exact same thing.

23.01.2015

Hi Charlie,
Thanks so much for your comment although I’m sorry about the circumstances in which it’s been posted. It sounds like you’re finding it extremely difficult to get yourself heard which given the symptoms that you’re describing and your family history must be particularly frustrating and I can completely understand why you’re feeling so anxious.

If you feel like your doctor is not listening to you or supporting you as you’d like then the first thing I’d encourage you to do is to ask for a second opinion from another doctor by getting your GP to make a referral to another hospital or consultant. If you’re not happy with your GP either then you can always request to see another GP, too. If you want to find out more about the process of getting a second opinion, I’d recommend you take a look at the NHS website which has lots of useful information to help you: http://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68

The other thing that I would advise you consider doing is get in touch with your local Patient Advice and Liaison Service officer as they’ll be able to offer you confidential advice, support and information on the symptoms that you’re describing and are better placed to be able to provide you with the information and support that you need. To find your local PALS officer, follow the link below and then type in your postcode or town in the search box at the top of the page:

http://www.nhs.uk/Service-Search/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363

Beyond that, I’m afraid there is not much more that we’re able to advise, unfortunately, as we’re not medically trained and are unable to provide medical advice. What I can do, however, is sympathise with your frustration. I am a leukaemia patient myself and felt unwell for some time before doctors finally diagnosed me with CML.

Frustrating as your experiences to date have been with the doctors, what I would say is try and remain positive and take some comfort from the fact that no two doctors are the same, support is out there and people are concerned about your welfare.

I wish you all the best in getting a referral and your conversation with the PALS officer who will certainly take your concerns seriously and be able to help you get the peace of mind and treatment that you deserve.

Thanks,

Andy

Anonymous
23.01.2015

Charlie,

I think Andy has given excellent advice. I am sorry to hear that you have had problems and hope you can get a doctor in whom you have confidence to review your situation. I hope that you can resolve this to ease what is obviously a stressful time.

Kind regards

Joan

Anonymous
26.07.2015

My husband was diagnosed in November and like Joan has severe kidney impairment. Joan's story gives me hope. Is there anyway I can contact Joan directly? I have so many questions.

Anonymous
27.07.2015

Chris,

I'm happy for you to contact me. My email is joansmith.parrfold@btinternet.com. If you email me and give me your telephone number I'll give you a call. Let me know what sort of times are best for you.
Joan