This topic contains 2 replies, has 3 voices, and was last updated by 
kh0305 1 year, 6 months ago.
It’s 3am cannot sleep and need to try and make sense of my situation. My mum is 82 and has Multiple sclerosis (MS) She was DX with Myeloma 12/2022. Cannot have any treatment or tablet based chemo due to a leg ulcer that has finally started to heal. she has an appointment with the specialist consultant 24th this month to discuss a treatment plan.
she has a list of other medical issues that may influence that plan including issues with having General sedation. I’m Autistic / Asperger’s Diagnosed 4 years ago aged 56 I’m a full-time carer to both parents dad is 92 and recovering from prostrate cancer (4 years clear)
both parents are old school as were their own parents along the lines of if not broken don’t fix it and both as stubborn as mules. In mum’s case I have three cards to put on the table and two wild card’s
CARD 1 mum has a cyst on an ovary which is benign and gives no problems, the consultant she see’s has booked her twice for keyhole surgery to remove the ovary. first time surgery cancelled due to open wound on ulcerated leg. this is now rebooked for 24th of next month. Pre op booked for later this morning. mum nor the family cannot understand why they want to remove or do this surgery if mum has a history of problems with a GA.
CARD 2 Mum has three broken teeth and only 5 or 6 left in total which the maxillo-facial team want to remove within three weeks. we again due to the ulcer issue and her Myeloma DX have been waiting month’s to get a date to have the removal surgery under local sedation. short term pain for a longer term gain mum cannot wait for this issue to be resolved.
CARD 3 Mum has a Myeloma DX non-curable but as it was put to her “we cannot cure but can control the symptoms and give you a few years” two or three maximum so in mums mind it’s terminal (sorry if this upsets anyone but this is her mind-set) keep on battling it like she has with the MS
Dad called me at 6pm last night and asked me to rebook the pre-op as mum was unable to attend due to pain and other issues she really doesn’t want to card 1 surgery cannot see the point of it. OK lets throw in a wild card.
WILD CARD 1 Dad is 92 unstable on his feet prone to falls colour-blind losing his hearing and has a visual impairment he no longer is safe to drive. so I have the job of taxis-driver to hospital appointment for them both along with shopping and general duties around the home (I have no issue with this and i live 20 miles away both brothers live within three miles of home but work full-time) I’m medically retired so stepped up to the plate willingly, Dad on Friday last week had a fast-trak appointment at hospital after a yearly check up at the doctors found blood in his urine. ultrasound and camera checks found he has bladder cancer and requires an operation within weeks to remove two growths while they are still small. He does absolutely everything for mum that I cannot do or do not feel comfortable doing. personal care and toileting issues
WILD CARD 2 10 day ago mum woke up complaining of a stiff neck. Shrugged it off as “oh. I must have slept funny” the issue has steadily got worse and has spread to both shoulders, Back and pelvic region’s the pain will not ease with over the counter painkillers or deep heat / volterol creams or heat pad’s
I have been placed in a no-win situation. Do not know where to turn. Who to talk to without upsetting the apple cart and being asked to sort out the situation regarding card one when the hospital consultant is adamant that this will be a long term gain to mum who is convinced she has no long-term future.
Any help guidance or advice appreciated sorry for the long and rambling post but I’m cold exhausted tired and sick with worry. do not know which way to turn for the best
Dear Nightowl,
What a lot going on. I really sympathise with you. When I was diagnosed with myeloma my father had dementia & complex health problems and had gone off his feet, and my mother, his carer, had cognitive problems & Parkinson’s symptoms, a different type of dementia. I had a very stressful juggling life similar to yours.
As the myeloma patient I didn’t have the other medical challenges that your mother has, but I know that myeloma treatment has REALLY helped me. The diagnosing haematologist told me she expected me to live for 3-4 years, but 5 years later I’m still in “remission” and living a life well worth living. (It’s now easier for me to have real hope to live another 5 years plus. )
It’s common for patients at diagnosis to fear that “incurable” means “terminal”, I certainly did (not helped by inaccurate info from GP).
Your mother should have a named Specialist Myeloma Nurse. I think that it would be helpful if you contact her/him to discuss all the issues that you have raised above. If you aren’t aware of who the Myeloma Nurse is, ask the Haematology team .
For yourself there are some resources that can help you to offload some of your anxiety to navigate this minefield that you find yourself in. Myeloma UK have a Peer Support scheme, if you have a Maggie’s Centre locally they can provide professional counselling, and I think Macmillan are also doing this.
In the meantime do try to look after yourself.
I found it helpful to take sleeping tablets rather than waking at night worrying about the family predicaments when a great deal was totally beyond my control, as your situation is beyond yours.
Hi Nightowl,
So sorry to read of the tough time you are having. It is very hard being a carer and the emotions do take a huge toll along with the physical exhaustion of having to keep so many balls in the air at any one time.
I hope that the consult on 24th goes well and can at least give you some idea of treatment options for your mum going forward. My dad was diagnosed with MM in Jan 2013 and it came as a huge shock as he’d always been fit and healthy and suddenly he looked like a skeleton. Like you, there were many sleepless nights trying to figure out what to do and thinking about various outcomes and situations and whilst I didn’t have the breadth of issues you are having to deal with, there were other things going on that just added to the mix plus travelling 10+ hours every week to visit my dad in hospital and support my mum and hold down a day job. I look back and wonder how I managed it! But we do just somehow seem to carry on but you must remember to find some time to take care of yourself as well, which is hard.
I second mulberry’s suggestion to talk to someone either through counselling or someone in a similar situation through the peer buddy scheme. I think it would have been really helpful for me to have someone to talk to when we went through all of this as you do feel rather alone and are doing your best to stay strong for your parents.
Dad responded well to his treatment and although there were some side effects, it was definitely worth it. I asked everything I could of dad’s medical team and took notebooks to all of the appointments to gather as much information as I could. I found, for me, that this was helpful as I had notes of everything discussed to refer back to and could jot down questions or concerns as they came to me so I did forget to bring them up in the consults. We had a lot of support from his team, particularly the two nurses, and I hope that you have a similar experience with your mum’s team and don’t be afraid to contact them.
Wishing you and your family all the best x
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