Hi, mum has just been diagnosed with incurable kidney cancer which has spread to her spine and pelvis. We have been told without any treatment she has about 7 or 8 months but they have offered immunotherapy. Which if works they say she could live up to 2 years. Will anyone from the hospital or macmillan get in touch with my mum about how to cope with this devastating news. Obviously the family are all there to support her but I feel we have just been left to fend for ourselves. If anyone has any experience with this please get in touch. Thanks.
First things first, estimates of life expectancy are a best guess based on old information, it has to be. How many people live 5 years after diagnosis for example is based on treatments available 5 years ago. We are all different, some people react well to a therapy and some not at all, this makes it a lottery of sorts, as there are a number of treatments for most types of cancer, the Doctor will use the one that they hope suits your Mum the best, and it might work well, it might after a time become less effective and they then switch to another option.
My best advice is live each day as best you can, some with a 2 year prognosis last 6 months, some are still here in 3 years, on this point I can speak with bitter experience.
When it comes to support, just ask, life is literally too short (especially now) to stand on ceremony. For us the hospital has Macmillan nurses who can help not only with emotional issues, but everyday things like getting a blue badge, or knowing where to access information. Try Maggies www.maggies.org for information. Our local Hospice has been a tower of strength, and has been known to put a rocket up the GPs surgery when required. Most of all ASK, help is at hand, the consultants have gone out of their way to provide information. At this point I am not going to miss out the hospital nurses, I haven't met one who thinks of it as a job, they genuinely care and will go the extra mile to help both you and your Mum, some will go an awful lot further than that.
Hi Andy, so sorry to hear this. Boys of any age need their Mum! I am sure you are going to be a great support. Well Done for taking the initiative to look. That is the adult thing to do. She is very fortunate to have you. I hope you have good, sensible people to support you. Quite often friends respond awkwardly but there may well be others you are not that close to who will really pleasantly surprise you. I hope you have your Mum with you and in comfort for a very long time yet.
I can understand the isolation you feel.....yes, totally understand it but at least you aren't making your Mum feel worse..you are facing this and looking for help. I wish I could advise more but I am new to this too although I have been ill with other heavy stuff for years. ( Used to that, know all the Consultants but this is a whole new board game.)
Best Wishes to you and Mum. I hope we will 'see' you here again.
xx from one ' fed up person' to another! Are you South Coast like me or further afield?
Sorry. Misread your name. Meant for you Hope!
Sorry Andy! I make so many mistakes these days.
To make a mistake is only human - no AI here
We are all here to help, everyone of us is different, the situations while similar in some respects are still very different with different pressures. I am lucky to have a family that in the main have been very supportive, The Christie is only an hour away, so should things go south very quickly I can throw the misses into the car and beg a bed there - rather than wait 5 hours at the local A&E.
Our sons (late 30s) are upset, the eldest has taken the slow deterioration of his little Mum very hard and now needs help himself, the lesson here being that when a loved one suffers, we all suffer and need to look at a wider circle to help all those who need help dealing with this. Fortunately we called in help for him before permanent damage was done - take time to look after yourself and the other carers in your group.
Just had a call from the Mrs, she is in a ward of similarly stricken ladies, the topic of discussion today being poo - how many, how hard, and avoiding enemas. Cracks me up as she is definitely not one for talking about personal problems, at least it's taken her mind off the chest drain that has to happen again today. They sound like a group of squaddies about to go into battle, keeping each other sane in a very insane situation.
Andy, Thanks for your lovely reply. Sounds like your Wife and the other ladies are doing each other good. Take Care, hope you are remembering to eat ! xx
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