Sunday, 19 June 2011

Bad News For Our Family : Multiple Myeloma

My family had some bad news this week. My mum (who's in her 60's) just recently was diagnosed with arthritis in her knee. Around the same time, she began having severe pain around her hips and back. The doctors were going on the supposition that there was something arthritic going on there too, and didn't seem too worried.

But my mum's situation is far from normal. Bear with me while I give you a little background info? It's rather a saga to explain at this point, as it's been going on for so long.

Around, perhaps 5 years ago (I'm bad with dates so I'm not exactly sure...), my mum had some similar pain in her back, and went to the doctors, expecting she had just pulled a muscle or something. To her surprise, he sent her straight off to a local hospital for an xray. Within just hours, she had been ambulanced over to a specialist Oncology hospital, and we were told that she had a tumour. It all happened so quickly, the family was in shock! She was given urgent radiotherapy treatment while further tests were carried out. Over the course of the next days and weeks, the doctors figured out exactly what was happening to my mum.

Painted Hand #46 on Recycled Wood - Hope, Survive, Trust, Love
photo by denise carbonell via PhotoRee

She was diagnosed with Multiple Myeloma, the tumour was 'just' a metastatic tumour, ie, it had spread from the primary cancer, the Myeloma. It's a cancer few have really heard of, never mind know very much about. It's fairly unique among cancers, because in effect, it's a chronic form of cancer. There is no cure for it - just treatments which hope to push the cancer into complete remission for months, or years. It's inevitable that the cancer will return, presuming of course that the person doesn't die from something unrelated before that happens.

Myeloma, also known as multiple myeloma, is a type of cancer arising from plasma cells which are found in the bone marrow.
  • Bone marrow is the ‘spongy’ material found in the bones that produces blood cells i.e. white cells, red cells and platelets
  • Plasma cells form part of your immune system
Normal plasma cells produce antibodies (also called immunoglobulins) to help fight infection. In myeloma, malignant plasma cells (myeloma cells) in the bone marrow produce large amounts of an abnormal antibody known as paraprotein. Unlike normal antibodies, paraprotein lacks the capacity to fight infection and has no useful function.

There is a big risk with Myeloma of the cancer spreading to other parts of the body and creating metastatic tumours, because it's a cancer of the plasma, so the blood carries the cancerous cells all around the body. Along with these metastases, myeloma can cause damage & weakening to the bones, often causing pain, loss of mobility, and fractures. It can cause hypercalcemia, damage to the immune system, anaemia, exhaustion, & serious kidney problems.

References : Medline Plus & Myeloma UK

Scary stuff, I'm sure you'll agree!

Over the next couple of years, mum had radiation treatments, several rounds of chemotherapy, and various other treatments, culminating in a stem cell transplant, using her own stem cells, harvested beforehand. She was in an isolation room for a long time, because the risk of infection after a transplant is so high. (In fact even just the illness itself makes the immune system pretty much non-functional, and not only do people with active myeloma catch things very easily, but a simple cold could actually kill them, because their body has no way to fight off the infection!) Mum spent a LOT of months in hospitals over those years. The transplant was successful, and she went into a complete remission. We all knew that it would come back some day in the not too distant future - but for right then, mum had won a victory, and we celebrated! Hope had won this battle!

Ribbon Tree, Dreams, Wishes, Hopes
photo by felibrilu via PhotoRee

So ... hence all of our concern when mum appeared to be having similar symptoms as she did when the whole thing started last time.

Over the last few weeks, mum was admitted to hospital twice because her pain was so extreme and despite strong medications, it was totally out of control. Mum had barely slept, and honestly, it looked like she'd aged a decade in a week! Thankfully, the hospital took it very seriously, and had her on a morphine drip and several other drugs pretty quickly. I think if I'm honest with myself, I knew then that this was no arthritis, and started steeling myself for bad news. During that time, they found some lesions (holes) in her bone in the area of the pain - this is something which happens with myeloma ... your bones can end up looking like swiss cheese and can break very very easily because of it. Thing was, they didn't know for sure whether this was old damage from years ago, or whether it was new, signifying that the cancer had returned for a second battle.

So the day after her second admission, she had a full body MRI scan, to get a clearer picture of what was going on in her body. This indicated that the Myeloma had indeed returned, that the damage was new damage. She was transferred to the haematology ward, where they specialise in treating myeloma patients (we were VERY lucky to have a specialist unit in our local hospital!!!!) She had radiotherapy yesterday, but they think she may only need the one session this time, which is great because radiotherapy side effects are pretty awful, particuarly the nasty burns!! She'll still have a burn within a few days, but it shouldn't be anywhere near as bad as last time!

Unfortunately for mum, they may have to do another bone marrow biopsy soon - they're pretty horrific, involving drilling right into the hip bone with a hand drill and removing a core sample. Terribly painful. She's pretty worried about it because the one she had last time was awful - they had to do it 3 times before they got it done right!! She also has to wear a back brace whenever she's not resting in bed, for the next few months at least, to support her bones and try to ensure that she doesn't break them (which is more than just painful, it's very dangerous as it can cause damage to the spine, etc.)

We still don't know whether she's going to need chemotherapy. My gut says probably yes ... but whether that's my nurses instincts (I was a nurse in a former life), previous experience, or simply fear talking, I'm not sure. She definitely, however, is going to have to have cement injected into her weakened bones, to strengthen them - I know, sounds barbaric, doesn't it!! I'm fairly scared though becasue I know the chances of beating myeloma when it relapses are much worse odds than the first go around. I love my mum and I can't imagine life without her. So I accept the truth but am also hoping for the best!

Today I'm Sad
photo by Compound Eye via PhotoRee

So, bad news : sort of an understatement.

Thankfully, my mum's in the best place she could be right now, (well, in this area of the country anyway) and her meds have her pain controlled fairly well. Plus, this time around, she knows the drill, which I think probably takes some of the fear out of it for her.

Heart shaped petal held gently in hands by D Sharon Pruitt - Click here to see her Flickr stream
I want to write about what I'm feeling and how I'm coping ... what it all means for us as a family ... but even getting this post together has been a bit much because I'm really ill this week. I don't know if it's the extra stress, or the attempts I've been making recently to research M.E. cardiac stuff so that I can present the cardiologist with all the right information he may need and probably isn't aware of... (when I finally actually get the freaking referral papers my GP STILL has not sent to me after weeks and weeks!! I'm so cross about that, by the way, but I've had more important things to worry about, I suppose!) ... but my pain has gotten worse and worse, I'm not sleeping well (worse than normal, that is), my neurological and cognitive symptoms are worse than they have been for quite a while, and I'm getting palpitations just sitting watching tv or reading, or even just doing nothing. I will say that I found it absolutely ironic that it's Myeloma Awareness Week next week. Strange coincidence.

Anyhow, I'm exhausted, body & mind, and my fingers are seizing up ... plus I've just probably bored you all to tears with all this medical gumph about a person you don't know ... so I'm going to leave it here for today, and try over the next few days to write about my own reactions and well, the more personal stuff that's going on. It just didn't make too much sense to me to talk about a situation without you guys really understanding what that situation was - so there you have it. I hope you managed to stay with me through all that. ;)

I also hope those who have commented on my last couple of posts and haven't yet had a response will understand why, and know that I will get to them as soon as I'm able. It means so much to me when you guys let me know you're listening. :) I don't want you to think I don't appreciate it!

(((((All of you amazing readers ... friends (!) who have given me so much hope since I began this blog!!))))))
I don't know how I'd be feeling right now if I didn't know that I had a place to go to talk about what's going on in my life, where people actually care enough to read, and to be here with me through whatever happens over the coming weeks and months.

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Multiple Myeloma Awareness Ribbon by Kirk P at

If you're able, please consider making a small donation to the UK charity Myeloma UK, for Myeloma Awareness Week. They fund desperately needed research into the cure, cause, prevention, & improved and safer treatments for Myeloma, and work at achieving a greater understanding of Myeloma.

Funds raised also enable their programmes and services to ensure no one faces myeloma alone. Even the smallest donation makes a huge difference when joined with all the other small (and big) donations! You can find details of how to donate on the Myeloma UK fundraising page.

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Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


1 comment:

  1. Oh Sussanah. I'm so sorry. If I didn't know better, this is the illness my Aunt has. She spends much time in the hospital and the last round was pretty bad. We have been praying for her for several years now.

    It is so odd to me how your ME and my ME seem to mirror each other. This past week I started having the heart palpitations as well. Today I have this annoying stabbing pain behind my left ear.

    I wish I had the right words to say to help you feel better but I knoow the best thing I can do is just be here for you and to pray. Both of which, I think you know, I am doing.

    Please keep writing as you can as I think that is one of the best tools we have at our disposal to help us cope with these difficult, difficult situations.

    You know where I am if you need to talk.

    Hang in there my friend.

    Sending you my love and hugs!