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dickb 11 years, 3 months ago.
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.
Hi Linda,
Sorry to hear about your Mum but glad she is peaceful and comfortable which is what we would all want when the time comes. She also has you there to support her which means you are doing everything she would want.
You are right about difficulty is diagnosing MM in older patients, my Mum was 'fortunate' in that her GP spotted something strange in her blood results (raised ESR levels) and so referred her quite early in the process of the disease. However, since then she seems to have been on a constant treatment rollercoaster which has been difficult for someone of her age.
All the best to you and your Mum,
Jillx
Hi Linda
Sorry to read about your Mum.
It Looks like Mum is getting good treatment now and its a shame that you didn't know till later.
Give your Mum a hug and stay strong.
Love Tom Onwards and Upwards xxx
Hello Linda, so sorry to hear your news, i am sending you, your Mum and the family love, Mum will know that you are there as she will hear you, hearing i have been told is the sensory ability that is retained even when we think that the person is drifting in and out of sleep. It is sad to think that Myeloma is being missed so much in older people when the signs are glaringly obvious really to those that know this illness, i so hope in the future that with more awareness people will be diagnosed earlier, take care at this difficult time San xx
I wish your Mum a peaceful end Linda, 85 is a good age. I am sure her God is walking with her now.
Kindest regards – vasbyte
David
[i]Never complain about getting old, it is a privilege denied many people[/i].
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 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.
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.
Hi Linda
Just to let you know I am thinking about you and your Mum.
Lots of love.
Mavis xxxxx
hi my mumis 75 and nely diagnosed she was in hospital for 6 wk before she told us has a family i think she was scared about it all the word cancer itsel is scary she was on chemo tablets and thelidomide and dex alsomorphine paches for the pain the lst visit they told her bloods was too low to carry on with the chemo tablets i think i know wat that means in laymans terms not gud she has a appointmet in 3 wks for someknid off transfusion not sure wat it is its not blood is all i know she at the mo is in a lot pain in her lower back and is starting to get confusedon her dex days shes good think it gives her a bit off a high but other days shes so fed up it hurts to see her like this shes very thin too and spends most off her days in bad but cant sleep at night wats that all about think its too much thinking about the cancer and family x
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
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.
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 Linda, just wanted to say that you are a real trooper, you have been great support to your Mum, particularly wanting to carry out her wishes through clear difficulties, she is at peace now thankfully, such a hard time for the family and we all react differently at these times of immense stress, but at the end of it all we just want to do what is best for our loved ones, great to hear the the hospital were so supportive too, love to you and take care of yourself now San x
Really sorry to hear about your mother, it sounds like she did not suffer too much and if I remember rightly, she had resigned herself. Thank you for the info concerning the Advanced Statement of Care, please don't let your disagrement with your brother sour your relationship with him, your mother has gone and she can't come back. You come over as very strong and I hope you are coping. But for now, you have a lot to do, all the best for the future.
Richard
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