[newscanParticipant]

Late December I had GP blood test results on an unrelated issue and the GP noticed urgent on a couple of the results. So she asked for advice and guidance, only 4 days later, Christmas Eve, I was telephoned by a haematology consultant. 6 days after that, 30th December I was undergoing a bone marrow aspiration. I had to go away for a while and on my immediate return had an appointment for the result. As the doctor was speaking, my husband noticed the lady next to her speaking (I thought she was a trainee!) and asked who she was. She introduced herself as ….. a Macmillan nurse. I think that was my biggest shock. A Macmillan Nurse in my appointment! I nearly broke my husband’s fingers as I said as calmly as I could “Oh do I have cancer then?” Both of them nodded and said yes unfortunately, but it is highly treatable but not curable and carried on explaining. I then was sent for a PET CT Scan, and told myself it would be Sleeping Myeloma. Only to have a bit of a shock since to be told there are bone lesions. So at every stage I had thought it was fine, and now I am soon going to have chemotherapy. I have to say this is the NHS at its best. No question is too trivial for them. Now I identify as a cancer patient and been told I can have free car parking at the hospital. Its being mad that keeps me sane!.

[fluffyflavParticipant]

Hi Newscan. Similar experience to mine. Oct last year had unrelated blood test, urgent appointment arranged with haematology couple of weeks later in a MacMillan centre attached to my local hospital. On the day said to my wife to go off to the shops rather than wait for me, whilst waiting noticed all these signs about cancer and finally put two and two together. Phoned my wife and said it might be better if she came back and went in with me. Long story short, diagnosed with multiple myeloma at beginning of November followed by CT scan, MRI and bone marrow biopsy etc. End of November got the full extent of the damage. Unfortunately my mum passed away at the same time so delayed treatment to the end of December. Just completed the second cycle of chemo today with cycle 3 starting tomorrow. Already have an appointment at Addenbrooke with the stem cell transplant team on 3rd April to discuss the transplant. It was all a massive shock to start with, fit and healthy all my adult life and just never expected this to happen to me. I’m sure it was the same for you. Heartbreaking having to tell my sons and sisters, I left telling he grandkids to their dads as that would have been a bit beyond me. Now treatment has started I’m much more positive although the timescale of treatment is still pretty daunting. If it wasnt for my wife not sure how I’d have dealt with things. You’ll get through it as just like me you have to. Free parking is good. Take care.

[jb2514Participant]

Hi both.
I was diagnosed two years ago, following sharp chest pains when lifting a heavy laundry basket at home. The ambulance crew were mystified as their tests showed nothing and the pain moved to my back whilst they were here. As part of my medical history, I mentioned my Mother had an Aortic E mbolism, so I had a whole body scan, which uncovered my Myelomae.

My initial reacton was to bury my head in the sand. I ignored what the Docors said and pretty much left my wife to deal with it.Part of climbing out of ths hole was when my Wife found the Cambridge Myeloma Group, which I fully recommend you join! there I hae have met people with Myeloma who were happy to share their knowledge and their Myeloma journey.

My reaction was pretty awful, though much better now. Stress and shock played their part, but really I needed tp “Man up” and research my situation> In my case, following the SCT, my life pretty much returned fo normal (whatever that is!) with occasional bouts of exhaustion.

As said above, you will get through the treatment.

Good luck

[fluffyflavParticipant]

Thanks jb2514. You have no idea the number of times I’ve had a bollocking for using the phrase ‘I’m just going to have to man up’. Great things have returned to normal after your SCT and I’m confident I’ll have the same reaction once I’ve had mine. Can I ask where you had yours?

[jb2514Participant]

Hi
I had my harvest of stem cells at Addenbrookes- then my SCT at Ipswich Hospital. I was in hospital 2 weeks then had to return as I had an infection.
I can’t say enough if and when you feel ready join a Myeloma Group. Cambridge isn’t my local group ( which I did try) but the people I’ve met there are inspiring- they holiday etc and showed me it was possible to live a life still.
We are all different in our approach to our diagnosis but I feel knowledge about what’s out there is necessary and the best people to show us how to go forward are the people living with myeloma
Good luck as you move forward and best wishes

[fluffyflavParticipant]

Cheers mate.

[tony642Moderator]

Don’t forget that we have a Peer buddy system where you can be put in contact with someone who has had Myeloma for probably a few years and gone through the gambit of Chemo, Stem Cell Transplant, neutropenic diets, etc.

I am one of the peer buddy volunteers, but there are quite a few of us, both men and women.

Through our Peer Buddy service, we’ll match you up with someone who is a trained Peer Buddy, and they’ll be there to listen, understand and support you. You can share experiences, discuss issues you’re facing and get support from someone with lived experience.

It is a free service and you would be partnered up with someone as closely as possible to what you are going through so they can share their experiences and how they coped.

Peer Buddies will offer up to six sessions of support over a maximum of six weeks. People can receive support either over the phone or via video calls (on the video conferencing platform Zoom).

Support is available for both patients and their carers/family members, with patients supporting patients and carers/family members supporting carers/family members.

The Peer Buddy service is also available to people with related conditions, such as AL amyloidosis.

Regards, Tony

[Author]

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