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Not sure where to go from here..... Mum has recently been diagnosed with terminal lung cancer so no treatment will be given. The consultant has given her 6-12 months. She has had liquid drained from her lung which seems to lessened her cough. Mum is reasonably active and is just managing to look after herself with a carer going in 3 times a day. Should we be contacting yourselves yet or is it too early? And is there Dementia MacMillan Nurses in all areas? as I feel we will need to have someone like yourself to help us cope with the complications of dementia. At the moment I only talk of the cancer until mum mentions it, is this the right thing to do? She hasn't said anything about it for a few weeks but I'm sure she does remember she has it by what else she says.
Both me and my brother live away from mum so we are distance carers for her which is a added issue.
What sort of support can a MacMillan Nurse give?
Any concerns around your cancer Macmillan Centres are very good for information and if you are lucky enough to have a Maggies Centre nearby they are excellent.HI LorraineB "Thanks" I just got to stay positive take one stage at a time its not easy but I’m getting there
There comes a time when the person you knew has been eaten away by dementia and you wonder why you’re going through the motions of getting their cancers cut out. I care for two. One has cancer and dementia, the other Parkinson’s, Alzheimer’s and arthritis. It’s tough looking after both and I manage because of my kid’s support. I didn’t want this for them though. It seems because we made the decision I am now also expected to ensure the chemist has delivered the injections to the clinic (which are used to keep on top of prostrate cancer.) It’s hard enough getting the PWD to the clinic in the first place. I no longer see the point of the treatments.
We've had this question come in via email:
"As my husband suffered not only dementia - moderate to high - but also severe delirium when in hospital procedures - is any examination that requires some intervention, anaesthetic etc worth it? I am beginning to think not, as I personally fall apart with just sundowning - very hard to keep the chin up!"
This is a just one paragraph from My Consultants letter to my GP
We have reviewed this at Urology MDT meeting and it is not suitable for partial nephrectomy or ablation so his options either lie with CT surveillance or complete nephrectomy. He is completely asymptomatic from this and independent.
I am aware that if he has a general anaesthetic this could worsen his dementia and give him cognitive impairment for up to 18 months.
Taking all factors into consideration he would rather keep an eye on things for now. We have agreed to repeat the CT scan in six months’ time and he has requested I see him with his family in the clinic with the result so we can have a further chat about weather it is safe to continue surveillance or weather nephrectomy is required.
I decided to go for six months surveillance fingers crossed hopefully it was the right one
Another question that came through:
"What advice would you give for explaining information given to us in my mother’s oncology appointments to her afterwards? The doctor usually speaks mostly to me which doesn’t advocate my mum’s independence in any way, she struggles to understand and always asks me loads of questions afterwards. I find it hard to explain it to her in a way that she will best understand or that won’t upset her too much. It’s hard to know what is best to say (or not to say) and I just want to keep her happy."
Another question we've had:
"My father is 86 and has mild dementia and was recently diagnosed with cancer. We are worried about the effects of different treatments on his dementia. If we opt for surgery, what are the potential effects of anaesthetic on his dementia? And are these likely to be temporary or permanent? And can chemo have an impact on a person’s dementia? We don’t want to try and cure one if this might make dad’s dementia worse."
Dad is having no treatment for his oesophageal cancer just palliative stents so that he can eat. He has no recollection of having cancer or that he has had stents.
We followed the advice of dad's oncologist who did not recommend chemo for dad due to his age 89 frail state of health and his dementia. She said that chemo would make dad ill and probably spoil any remaining time he had. I am so glad that we did as dad has had 13 months since diagnosis and is still symptom free and very happy. A good choice in dad's case.
Dad has been referred to the hospice and we have had a visit from a Macmillan nurse who was very helpful and even arranged for dad's doctor to visit and fill out a DNAR form for him.
Here we have another question that came through:
"How do I explain my mum’s side effects of chemotherapy to her? Sometimes she remembers she’s having cancer treatment and accepts the side effects she’s having, other times she forgets she even has cancer and becomes bemused and upset by her side effects (tiredness, vomiting, hair loss). I don’t know whether to keep reminding her and upsetting her more or say it’s something else instead?"
"How can I best keep my Dad relaxed and calm throughout cancer treatment? He can become agitated and distressed throughout the long waits before and the chemo itself. I hate seeing him worried and want to do my best to make him as comfortable as I can."
We've had another question come in ahead of today's Q&A:
"My mum was recently diagnosed with cancer, I’m worried that if we mention her dementia diagnosis in her cancer appointments it might affect her cancer treatment options. How should I mention her dementia and will this have any impact on her options?"
Another question that has come through:
"My husband has Alzheimer’s and bowel cancer. Getting him to the frequent hospital appointments for his cancer and treatment is a challenge to say the least! Especially when he forgets we are going / why we are going. Do you have any advice on how to make this easier for us both?"
Any concerns around your cancer Macmillan Centres are very good for information and if you are lucky enough to have a Maggies Centre nearby they are excellent.
HI LorraineB I have been in contact with Macmillan cancer care and get regular email updates but whilst I’m holding off the Surgery at moment not much they can help with maybe a different in September after my next CT scan I also have the Masonic Charitable Foundation primed and ready if needed so I’m on top of the game hopefully I wont need either