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.

Divider Bar Image


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.

Divider Bar Image

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! :)


Sunday, 12 June 2011

'Voices From The Shadows' Trailer

One of the best books I've read, in terms of really expressing what life is like for people with severe ME, is Lost Voices From a Hidden Illness, which tells the stories of many different people with ME, & their friends, families, and carers. It's beautifully made, looking very much like a coffee table book, illustrated with images of those telling the stories - each picture telling as much of a story as the actual text. It was produced in conjunction with Invest in ME, one of the leading UK charities for ME. If you have ME, or care for someone who has, I highly recommend investing in a copy of this book and passing it around to friends and family to help them understand more about what you're going through!

I found out this week that coming soon is a 'film sequel' to Lost Voices - Voices From The Shadows. I wanted to share the trailer with you here. I'm quite excited about this film, and have high hopes that they will yet again produce a powerful tool for ME advocacy and awareness!

Voices from the Shadows Trailer from Josh on Vimeo. describes the film in the following way :

Divider Bar Image

‘Voices from the Shadows’ (is) a documentary bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illness of the 21st Century.

Hidden away in darkened silent rooms for years, even decades, men, women and children are suffering a vicious injustice. Although shockingly ill, many are disbelieved, blamed and suffer medical neglect and even abuse by professionals. Deception and obfuscation have been used to deny the horror of their plight.

The isolation imposed by this severe illness means that the daily reality of these sufferers lives remains invisible. They are too ill to make their voices heard, and few professionals are willing to risk damaging their careers by speaking out to protect them.

Biomedical research has been stifled, so prejudice and misinformation have become widespread. Irrevocable harm is still being caused by inappropriate ‘treatment’. At last international research is highlighting this travesty, but in the UK it could be many, many years before change occurs. Meanwhile, lives are being destroyed and children and young people are particularly vulnerable.

This is a profoundly moving, poignant and disquieting film by two patient advocates/carers. It shows the love, enduring courage and determination of those who bravely strive to be heard as they fight for health and respect.

Divider Bar Image

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! :)


Sunday, 5 June 2011

The Lives We Have Lost - Reader Participation Post

One of my readers (Brent - @ArgyrosfeniX on Twitter) suggested a while back now, that I write a post asking readers about what careers they have lost or are struggling to keep up with due to their illness or disability. I thought this was a great idea, and have been intending to use it since. :)

So many of us have lost so much due to sickness and disability - and those losses are hard, and have a major impact not just on our day to day lives, but on our futures, our finances, our family relationships, our self esteem ... I could go on! I think it's certainly something that's very important for us to talk about, because it can be a real grieving process to lose a job or career - or an education that we have invested our time and energy into for many years. There are many other losses associated with illness, many of which are just as devastating!

So, my questions for everyone reading here today are :

What were you doing before you became sick/disabled? What did you lose when you became sick? and How has your life and your future changed as a result of these losses?

Before my M.E. became severe, I was working as a Neonatal Intensive Care Nurse, looking after premature and sick babies on the regional NICU unit. It was a really amazing job, and an opportunity to do something that really mattered! I quite honestly really loved that job!! Nurses in this country don't exactly get paid an amazing salary, but it was good enough to live comfortably - and as I worked my way up, would have become pretty good.

It was 8 years ago now that my ME relapsed, and I became housebound and eventually had to give up my job. That's 8 years of experience in one of the best UK NICU units, lost. A career in shatters. Had I kept working there, I could have been a sister by now.

Instead, I'm living on disability benefits, and have lost my house because I wasn't bringing in enough money to cover the mortgage (and the extortionate Liverpool council tax fees!) despite living fairly humbly. My credit was damaged because of a graduate loan I took out when I was still working, and was subsequently unable to cover the payments after I quit my job. Even were I to get better tomorrow, (and regain my lost memories and neurological functions that allowed me to actually safely do the job!) the chances of me ever working as a nurse again are small - I would likely have to re-train in some way, possibly even have to go back to uni, because the medical world moves on so quickly - which I couldn't afford after all these years of living just above the bread line.

My self esteem has quite frankly taken quite a battering over the years. I suppose a lot of my identity was wrapped up in being a nurse. I felt like I mattered and was making a difference in people's lives... now I barely see anyone to make a difference!! I've had to learn to see myself through different filters, to not see my value in what I can do, but in who I am. I'm not there yet, but I'm certainly better than I was even a year ago.

Dear Diary : Taken by Emily Mills. Click here to go to her Flickr page
Another important loss for me, which I see almost equally to my career, is that I all but lost my support system. When I relapsed, I was just coming out of an abusive marriage, and was trying to deal with all that had gone on during my years of marriage. In one foul swoop I lost the ability to go to therapy, to spend time on my online support group. I have lost both time and depth of relationship with most of my family members, and completely lost my real life friends ... only one of them has stuck with me through my illness, and she (incredibly!) became my carer and has been with me through it all! No-one else could cope with the limitations my illness placed on me, and my friends basically dropped like flies over the first year I was housebound. Since my relapse, I've very much had to go it alone, with my journal to vent to. I think I'm in a fairly good place now, but I can't say it hasn't been hard to be so alone with so much pain to deal with.

However I think the single biggest thing I have lost is the years when I could have been creating a family. I have Polycystic Ovarian Syndrome, which causes fertility issues. It would have been next to impossible for me to get pregnant 8 years ago, and would almost certainly have required IVF. Now ... well, it's never going to happen, and that's something I just have to deal with. I still want to have kids ... I've always wanted to adopt or foster anyway. But with ME, the likelihood of me becoming well enough to have kids and actually be able to raise them (without them ending up as carers for me!!) gets less every year I spend this severely ill, so there's a chance that I may never have children. And of course, the older I get, the harder it becomes to meet someone to spend my life with, too, and that's even without worrying about the fact that I have no opportunities to meet someone anyway, as I don't leave my bed, never mind my house! Quite frankly, I wouldn't willingly inflict my life or limitations on someone else anyway!

Lastly, and simply, I lost my health. The single biggest resource a person has! You can't overestimate just how much that means!!

Don't get me wrong. I don't allow myself to live in regret, or to dwell constantly on these losses. But I believe talking about it both helps us to cope with the loss, and to grieve for it. Maybe even more importantly, I hope that it will also help people outside our situations to better understand what those of us with chronic illnesses actually go through - what it really means to live this kind of life, day in, day out. That's certainly a very current issue, considering the magnitude of media slamming sick and disabled people, and painting us as weak, lazy, and selfish people who place a burden on society without ever giving anything back. Worse, they see us as liars, out to bleed the welfare state dry without any substantial or even real illness or disability! Society's perception and understanding really need to change, and the only way that can happen is for them to see the truth of our lives. And so I write my truth, and hope that people can truly hear it. :)

"But living a life of regret would have kept me looking backwards, rather than forwards. Hope is forward leaning. It’s the ripple of energy that trusts there are resources enough to live into the future. I had to focus on what I could do, not what I could not."
~ Julie Neraas ~

I would really love it if you guys would share your stories, your previous lives, your losses and your hopes, with me here - with each other. Comment away! :)

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! :)