I suddenly lost my mum to this dreadful disease, it was very aggressive and she was 85, one minute she was pottering around the house the next she had hypercalcemia and blocked kidneys, her heart couldn't cope. Now my friend has been diagnosed 41 years earlier than my mum. Given I'd never heard of it before late Spring I find that almost unbelievable.
Coming back onto the board after recommending it to her after seeing the under 50's group I came across your post and was touched to hear you enjoying doing simple things and taking simple pleasure out of it. I know it's the kind of message my friend will be glad to see.
I'm so glad you are able to write so positively when you've clearly been through so much. Stay strong and enjoy the small things :0)
Oh and I want to add that the Thalidamide WAS halting the Myeloma cells, it's just unfortunate that my mum's kidneys were badly damaged shortly after diagnosis was made due to the aggressive nature of her particular case.
Hi,
Sorry about your mum. When the Myeloma affects the bones they release calcium and this goes to the brain and causes confusion, it's possible that she is on a drip to get rid of the calcium.
Also the kidneys can be damaged by large proteins caused by the Myeloma. They block the minute tubes in the kidneys and to unblock them they also need medication administered by a drip.
My mum needed a blood transfusion, this is because as Myeloma cells rapidly increase in number they crowd out the production of red blood cells and these carry oxygen so patients become breathless.
As the white blood cells are affected, infections are common and the anti biotics are often administered by a drip.
Best advice is to find out more about Myeloma on the internet. Think about an Advanced Statement of Care so that you and the doctors know what your mums wishes are. Ask her to nominate a family member as someone entitled to know about her condition at every stage.
My only critisism of the hospital staff is that they tended to just 'crack on' with things in the assumption that family (and indeed the patient) was happy to leave everything to them and didn't need informing step by step what was going on. They would tell mum what they were doing and why but never really EXPLAINED the bigger picture but finding stuff out on the net helped because I understood the disease and could track it's progression from what the doctors said.
It took us a long time (relatively) to find out that mum's cancer was very aggressive and advanced, if she had known she may have opted not to have treatment and we had to ask to get this information. It took a bone biopsy to confirm it though.
Best wishes to your mum and your family. Type whatever you want to know in a search engine and read as much as you can. I've read so much I can't think of anything in particular to recommend but it's all out there and easy to find.
Thankyou to everyone who replied. I was lovely to hear from you all. Mum passed away at 02.00hrs yesterday morning. She was unconscious when it happened so it was peaceful. Ultimately it was renal failure that took her as a complication of the Myeloma…whether it's judged to be pnumonia I don't know but it's because her body wasn't flushing out properly so her blood chemistry was constantly screwed causing a LOT of intervention by the hospital.
The staff at the hospital were absolutely dedicated. No expense was spared, no level of care was denied her, her medical condition 100% dictated how they decided to treat her and they battled to the end and even when they knew it was hopeless and indeed that her death was imminent they continued to treat everything they came across because my brother couldn't give up despite me pleading for him to.
This brings about another issue. There is something called an 'Advanced Statement' or 'Advanced Statement of Care', anyone who has a loved one suffering or indeed has a serious illness themselves could do to make one out (you can just write it or get it typed and sign it) and make sure medical staff have a copy of it….even your doctor. No one wants to ask difficult questions and the closer it gets to the end the time seems more right but somehow harder. Mum wanted to be let go if there was no hope but because every time she reached that stage where she could have gone peacefully and avoided extra weeks of ups and downs, needles, stress and fear the medical profession picked her right back up again and kept her going, in part down to a duty of care because they knew they could and at the end because my brother told them they had to.
Ultimately mum was begging my brother to let her go, she'd done an Advanced Statement with me but was too unwell to even sign it and in the end it caused a bit more suffering than need be because the decisions about her care were left to family and my brother and I had very different opinions, mine echoed my mums but just my brother having a different opinion meant she was kept alive at the worst phase when it would have been kinder to let her go.
There has been so much negative publicity about the Liverpool Care Pathway relatives are panicked by it unnecessarily and so advanced statements are even more important.
There is an upside and a downside to being very elderly when you get Myeloma, due to her age she missed her best chances of going into remission due to being not suitable for the more powerful treatments but also due to her age things happened so fast she didn't get to the bone damage that causes a lot of pain stage so I have to say she hated being ill and bed ridden etc but she did NOT suffer actual pain toward the end, oddly the bone pain occured earlier as a constant ache but even mild painkillers tackled it for the rest of her illness. This is a huge relief to me and I hope others can take relief from it as well. Love to you all. Linda
Thankyou San, she seems unaware of her surroundings much of the time and sleeps about 90% of the time and can't keep her eyes open even when she is awake. I do wonder how many dying people have heard relatives saying things they would rather not hear because people think the dying person can't hear them. She's knows I am there though she smiles and it lights my day up, funny to think we didn't get along once upon a time.
Thankyou David, she has confounded us by showing every sign of being within days if not hours of death by 'giving up' her swallowing reflex only to tuck into a large dinner plus pudding the next :0) She's always loved her food. I feel like I am saying a very hard goodbye every single day it's a rollercoaster but she is peaceful, I asked her what she was thinking about in all the hours she was sleeping and she said she isn't thinking anything she is just drifting along…I find that rather nice.
Hi Jill, within weeks of being told about mum we were told it was stage III and aggressive. I am not sure exactly how it all works but I was given the impression that some cases are much more aggressive than others and it's not entirely down to how quickly it is spotted. My mum's diagnosis came about in exactly the same way as your mums did, it seems my mum was one of the more unlucky ones in that hers spread like wildfire and did a lot of damage very quickly and it's the damage that makes the difference because the myeloma was responding well to treatment but by the time that started to happen the damage to her kidneys was done. I do feel for you and your mum because the treatment is not nice but worth it if you are one of the ones who has a reasonable quality of life and can hope for a period of remission.
Thankyou for your kind words dickB. I do hope that people become more aware so that the combination of bone pain and fatigue triggers more alarm bells. There isn't anything I can do for my mother other than be there but I do hope for earlier diagnosis in those more able to have a fighting chance because they can physically cope with the aggressive treatments and have a real chance of remission and many more years with their families.
By the way, your dad is going through stages and there is a good chance that over time he will become more peaceful and settled. My mum was very, very ratty in hospital but she has reached a calm stage where she just seems very comfortable. Yesterday she told my brother she thought he was cruel for 'not letting her go', death from cancer is a process with stages and whilst on the one hand I am upset that mum realises she is dying it is also comforting to know that she actually wants to go now. She has gone into herself and whilst not a believer as such, when I feel overwhelmed I imagine my grandmother on her journey to come and get her to guide her to wherever people go next, it helps.
We contacted Macmillan last week because my mum wanted to come home from hospital and be nursed at home. They told us they can only get involved via a referal from either the hospital consultant in charge of patients care OR by the family doctor. You DO have a choice about where you die but sometimes you have to be firm. There is something called an Advanced Statement of Wishes or Advanced Care Plan. On it an individual states what kind of treatment they want, if they can't write it it can be typed up as long as they sign it, take a copy of it to your doctor and another one to your dads consultant. After reading up on it I decided I'm going to do one and so is my husband…everyone should consider having one even when they are not ill.
Your dad is lucky he has your stepmother, my mother has been cajoled into going into a nursing home because the hospital social worker has concerns that my mother wouldn't be cared for at home due to my brother and I having work committments. We are like you, we have jobs, I have a family and live in another town and trying to get information so that you can make plans is nigh on impossible, getting carers in wasn't an issue but it seems just like my father before her my mothers wishes about dying at home will be ignored by the medical profession.
We were told about the nursing home and told mum had agreed to it (she'd said anything to get out of hospital)and we read about the Advanced Statement of Care at the end of the week just as she was being admitted into a private nursing home. I knew about them but didn't realise they applied to everyone and covered palliative care.
I found reading about the final stages of cancer on the internet useful, I know what I'm looking for and my mum is probably within days of passing away. If you have some idea of WHEN you can move heaven and earth for a short period of time but realistically it's hard even for medical professional to guage exactly when but you mustn't beat yourself up (I'm sitting here doing the same) you cannot be with them 24/7 you have to sleep and they are asleep a lot of the time as well.
Update on my mum. She spent 6 weeks in hospital and then inexplicably they discharged her to a private hospital on Thursday afternoon despite her wanting to go home, it is now the early hours of Monday morning and it is clear that my mum is dying, she is confused and barely communicating and stopped eating today, she sleeps most of the time and is peaceful and comfortable, she smiles when she realises my brother and I are there but most of the time she is disengaged and preparing for her journey….we are still left to figure out things for ourselves, only last week in a desperate bid for more information my brother was told by a haemotologist that they were 'pleased' with her. They don't seem to treat patients as a whole, different departments seem responsible for their own 'bit', the haemotologist was pleased because they could look up her bloods on a computer and see an improvement in the myeloma but the computer screen doesn't show her kidney malfunction and her body filling up with fluid causing havoc with her pulminory system. This is such an individual disease. I heard that up to 25% of myeloma patients die within a few months of diagnosis, I feel sure they must be people like my mum who are either very elderly or have pre existing conditions or both. The myeloma responded very, very well to thalidamide and I think that offers a lot of hope for other people, unfortunately my mums cancer was too advanced and too aggressive before it was discovered and the damage to her kidneys means she cannot go on. I just wish there had been a way of recognising there was something wrong other than old age, being tired and having aching bones is not unusual in someone who is 85 and has suffered from joint pain for 30 years. A major clue was shingles last year…if only we had known it WAS a clue. I wish everyone well with their individual battles and journeys, hoping they are able to fight harder and their journeys are MUCH longer. I hope more information about this disease becomes available to the wider public so that people can be more on their guard as early symptoms present themselves.
I never did get round to emailing anyone, what a whirlwind this has been for our family. My mother has been in hospital for 4 weeks now and from being diagnosed with 'just' myeloma about 6 weeks ago, she now has a heart murmur, arterial fibrilation, renal problems, pnuemonea, a UTI, mild psychosis, slurred speech she can no longer walk and is doubley incontinant. She had a routine blood test and the hospital rang us and told us to get her into hospital immediately. Five days later after having to ask for information in writing we were given the news that her kidneys were blocked and she had a very aggressive stage III myeloma. The hospital has been great with regards to her treatment, definately not written her off but the communication isn't great. The good news is that she is fed up but otherwise remarkably comfortable, she even had a big smile for me after we'd been called in because she developed breathing difficulties and they moved heaven and earth to stabilised her…so no complaints about how mum is being treated, just wish they'd been straight with my brother and I so we could prepare better for what is happening.
I will send an email and I'm writing a note to the District Nurse because I keep missing her, she'll pick that up today. Obviously I need answers to some questions but I'm not giving up on the health professionals just yet, I do think that sometimes these decisions are made in the very best of intentions for the good of the individual patient. It's just that we've gone from all the reassurances that it's probably nothing serious, to all the reassurances about what can be done to prolong life, to an end of life care pathway without any proper explainations along the way and this needs to be addressed.
Glad I gave you a giggle Dai, I'm such a muppet at times, spelling is not my forte.
I've worked in adult mental health for about 15 years now and EMI (elderly) for a few years before that. I deal with a lot of emotion but sometimes it's hard for me to be emotional and one of the reasons I'm not more ready to pick up the telephone and talk to people is because I don't want to cry to strangers. My mum was booked for Chemo last week and didn't get it. I visited her today after going to clear out my youngest daughters room at University and she told me that on Wednesday she has an appointment to visit a Hospice. I just feel someone should be explaining things a bit better.
