Guilt : Trying to Find a Healthy Response

When someone you love is seriously ill, there's a relatively standard mix of difficult & painful feelings, and issues. Grief. Fear. Anger. Frustration. Sadness. Worry. Often guilt. But when you're also seriously ill yourself, it complicates things almost to the point that it's impossible to convey your feelings, (never mind deal with them!) because they're all mashed up and interwoven, and it's hard to separate out each individual strand, like fairy lights, retrieved from the loft just before Christmas!

photo by lovelypetal	via PhotoRee

When my mum was first diagnosed with Multiple Myeloma 4 years ago, I was very ill, housebound ... but it was a better stage than most of the last 8 years. Mum was in hospital for many months, on and off ... including one pretty long stretch when she had a stem cell transplant and was in isolation. At the time we hoped, of course, that she would come through it and go into remission ... but we didn't know anything for sure, and I was really scared that I would lose her. My whole family was really struggling. I'm the oldest of 3 children, (my youngest sister being a full 10 years younger than me), my parents were at the time in their mid 50's ... and I felt responsible for keeping everyone else afloat. There were so many roles (most of which were natural for me, some of which were just plain hard work) that needed to be stepped into, and which I wished to carry out. I guess I was going for the full on martyrdom, and not in a good way!! I used my stress and the affect stress has on my body, forcing my intense adrenaline rushes into overtime so that I could visit my mum every couple of days, support my family, inform and liase with my mum's friends and relatives. It's my default stance ... the carer mode. Except that, of course, I was still struggling to cope with my own illness and disability.

I had ... and have, thank God, an amazing best friend, (I'll give her an alias, I think, as I'm not sure she'd want to be identified online, and I imagine I'll probably talk about her a fair bit in the future. So ... she'll be known as Anna) who's my carer and very much a part of our family. I'm not sure I'd have survived the last 8 years had she not been here. We're each other's rocks, in many ways, and the things we've been through together have brought us really close over the years! She supported and loved me through that difficult time, and I'm more thankful for her than I can possibly express!!

photo by eflon	via PhotoRee

I knew, though, that everything I was doing would have a backlash on my health. My screwed up adrenaline kept me afloat in the short term, but around the time my mum was finally getting better, and things slowed down for us all, my body crashed in a big way, and came to a grinding halt. I've been bedbound more often than not during the years since then.

Now that my mum's illness has come back, my first instinct is to fly into that overstressed 'super-hero-aspiration' mode - but I just don't have the choice to even try it, this time around. I'm completely bedbound ... have been for about a year and a half this time. I can barely manage to make it to the bathroom ... never mind to the hospital to visit my mum.

The first time Myeloma darkened our doorstep, I'd say my primary emotions were grief and worry. (Though there were certainly many others in the mix too!) This time, guilt is overshadowing every other emotion to the point that I can barely feel anything else. I do know that it probably isn't fair to myself ... and that my mum would never want me to feel that way (just as she wouldn't have wanted me to run myself into the ground for her last time!!), but it's hard to teach yourself to react in a different way.

I feel guilty more than anything because I can't visit my mum. I talked about it with my dad last week, and he suggested, kindly, that I should just give her a phonecall every few days ... I had to admit that I can't even manage that right now. I felt ... feel ... so utterly useless and really, really embarrassed to admit that. It's hard to explain how conversation, especially over the phone, can be so completely exhausting that it's basically impossible. How can anyone possibly understand that?? I've been managing to email her short little messages several times a day ... and I think mum more or less understands why I can't do more, and that I'm trying my best. But I can't seem to stop myself feeling like a failure. I own those insecurities, though, and I'm trying to teach myself that it's ok to not be able to do everything ... that I don't have to be perfect. Not an easy lesson to learn!!

photo by i heart him	via PhotoRee

I feel guilty that I can't help out around the house, do the cleaning and laundry etc for my dad. (Anna and I moved in with my parents, and my younger sister who still lives at home, a while after my mum went into remission. With my mum and me both unable to work, neither of us having much money in savings, and struggling to pay our mortgages, we decided to merge our finances by me buying a share in their house. So, I sold my home and we moved in. We lead fairly separate lives, though it's not a large house (I have one room, as does Anna, with shared bathrooms and kitchen), partly because I'm not able to spend much time with people as it wears me out so quickly, within just minutes at best ... & partly because my body clock is reversed so we're up in the night rather than the day. In the normal run of things, Anna, my mum, and my sister share the household chores... but we eat separately and do our own laundry etc. I'm unable to do any of that work right now, and with my mum now unable too, it's a pretty big burden on Anna especially, on top of caring for me ... and being sick herself. (She has had Post Viral Fatigue Syndrome for a year now, and we're both hoping with everything in us that it will clear up soon and not turn into something more insidious - you all know what I'm talking about!!!) My dad works really hard, often into the evenings, and now of course he has to fit in a hospital visit each day too. The one thing I desperately want to be able to do is breeze through the house, cleaning as I go ... but I can't, and I have to watch my friend and my dad struggle, instead. It's beyond frustrating.

It feels really complicated, dealing with worrying about my mum's health at the same time as so much going on with my own. (My blood pressure issues seem to be getting even worse. The things the doctor promised to do have yet to materialise - though I've managed to get hold of her email address and am hoping the email I've sent will push her into action! The extra stress on top of all the normal stuff seems to be making my pain worse and is sapping my energy. My neuro issues have been getting really bad ... struggling to communicate because I keep forgetting so many words and losing track of what I'm saying half way through sentences.) And of course we're all very aware that this is a long term situation. (Mum has started a new treatment this week, which has just recently started to be used for Myeloma, called Velcade. It's shown some great results for Myeloma, so I'm really happy that she's able to receive this treatment!)

The situation is complicated even more by the fact that until my mum got ill, she was actually helping Anna with some of my care. Not huge things, but little things that build up, like feeding my dogs, taking Kiya to the vets, (Kiya, one of my westies, has a severe chronic skin problem and needs regular vet visits) and doing a bit of my laundry. In essence, I've lost a carer, which while Anna is ill also, isn't the best of situations. We don't know how things will go with my mum's treatment, of course, but we certainly can't count on mum returning to her former amount of mobility - and in any case, the likelihood is that it will be a fairly long road back to recovery.

I felt horribly guilty that my 60 odd yr old mum was caring for me anyway ... and then she got ill and I can't help but worry that her doing those extra jobs could have put extra stress on her body and put her into relapse quicker than might have happened otherwise. And now I feel guilty that I'm also worrying about myself and Anna because mum can't help us anymore. (Not to mention worried that the extra work for Anna will make her sicker too!) I do understand in my 'head' that these are reasonable concerns, but in my heart, I feel guilty, like I'm making it all about me when it should be about my mum. It's just such a horribly complicated and interwoven situation!!!

photo by missrains	via PhotoRee

I just wish things were different. I wish I could be the carer instead of the one who needs to be taken care of. I wish mum's cancer had returned at a time when I am able to do more ... or that I hadn't pushed myself so hard last time. I wish that the NHS had done more for me over the years so I hadn't ended up in this position in the first place!!!! I wish my family understood a little better what I'm going through so that I didn't have to worry that they feel like I'm letting them down. I wish I wasn't a burden on the people I love! .... But these are all things that I can't change. What I can change is my response to the situation, and to my own feelings.

I'm trying really hard to deal with this in a more positive way this time ... in a way which lets my family know that I love them and am supporting them, but without doing any more damage to myself than I can help. I'm working on not beating myself over the head with guilt ... no easy feat, but I do realise that it doesn't help anyone for me to do that, and that it wouldn't really be fair to myself either. So I'm trying instead to take care of myself too ... whether that means talking about how I'm feeling, looking after my own physical health, or simply eating cake with Anna! ;) Guilt really is a waste of effort, and I don't want to waste any more of my time on it! All the same, it's pretty difficult to stop feeling it!!

I'm really glad that I've started to be a bit more open about my health problems and how ME affects me, over the last few years, so my family do at least have a bit more understanding of my illness (my mum especially) This would be a much worse situation had I not got a bit braver!! I also feel very lucky to have got hooked into the ME community over the last year or so, because you guys are all so amazingly supportive!! I'm thankful that I have people around me that I can be honest with. I hope you all realise just what a massive difference you are making to my life! :)

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! :)

Guilt : Trying to Find a Healthy Response

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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.

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!

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!

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.

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.

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.

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! :)

Bad News For Our Family : Multiple Myeloma

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