Hi,

Gosh reading your post I feel and have felt exactly as you do right now. I am so sorry to hear of your Father's diagnosis and I know how devastating it is. I believe there is always hope. In February We were told my Mum had incureable, inoperable lung cancer. Thankfully they have put her on a targeted cancer drug, not to cure the cancer (they stressed this) but to hopefully stall it from spreading further and possibly shrink the tumours. This is only a temporary solution as the drug does not work for everyone and when/if they see on a CT Scan the cancer is continuing to spread she will be taken off it, also the cancer ends up becoming resistent to the drug. Up to the point she was diagnosed the only symptoms she had were a few sharp pains in her back, we never guessed it were lung cancer as a few years previously 1 biopsy came back clear and because her right lung showed changes that remained stable for 2 years they stopped all ct scans and said it was fine.

I'm like you, I refuse to give up on my Mum. I have read everything I can read about lung cancer, other treatments, this, that and the other we could try to the point I couldn't sleep and was having panic attacks. I believe my Mum can turn this around, not be cured but stay stable and have a life but I sometimes think this is my wishful thinking because basically I can't and won't accept I am going to lose her anytime yet. When we love someone like we do what is the other option? No thanks. I know how you feel with wanting to have some control over their care. I have looked up every blood results that she receives on her mycare account, desperately trying to see if ther bloods are normal and questioning the team when I see that her sodium levels were not nirmal and she is anemic. They are 'monitoring these levels' is the reply. I get worried sick about them going down lower and try to think of ways to increase them by food and nutritiants but the problem is at the moment she is not eating, her appetite has gone. 

All I can say is your not alone here. This is a site NO ONE wishes to be on and I wish with all my heart I could go through what she has so she could be free of this awful cancer. If I could cure her with my love she would live but I can't and thats the problem, we - me and you can't cure our parents of cancer. Its out of our control to some degree. We have to listen to the oncology team but it doesnt mean that we can't do our own research and put questions to them if we think they could try something or we want an opinion or advice. They are our responsibity and our role is to do everything we can to make them comfortable and content if we can. We may not be able to remove the cancer and make them 'healthy' again but we can strive to find ways to make them healthier than they are at present, find little ways to encourage them to feel better and give them more time with us as painfree as possible. Its a huge burden on the people who love them most because we can't just sit back and do nothing. Sometimes the stress of it all overwhelms me. Sometimes I wake in the night and I can not believe my Mum has incureable cancer. All I try to do is get through each day, not look too far ahead because none of us know what the future will bring and in our situations planning too far ahead can be problematic. Keep being the wonderful support you are to your Father. Give them continued support, love and care and behind the scenes keep reaching out to others for help and advice to make sure your father is as comfortable as possible and never give up on finding ways to make him feel better along with the oncology team. I will never give up but I accept I simply can't cure my Mum but I am determind to do everything to give her the best life I can. Sometimes the oncology team don;t always think of the options that we do. We are caring for our parents and we see things they don't so please do not be afraid to ask questions, put your ideas across and see what they say.

I'm here as are others if you ever need support or a chat. Take care and remember you are already doing an amazing job loving your father as much as you do.

Jane

evening

my mum has just been diagonied with the same as your dad, up until 5 weeks ago she was working in the NHS, she lost lots of weight at the start of November, and was told it was type dibetias, she became more and more unwell in the last few months and eventully went into hosiptal 3 and 1/2 weeks ago

she had jaundus and had to have a stent, and thank god is now eating and drinking, she has had a biopsy but no restults as of yet, one doctor told us there is nothing they can do and she is looking at around 3 months,

they have not been that instreated in my mum as they just want to get her out and then let king collage deal with her, mum is 74 but never been unwell.

its devestanting watching her sink lower and lower.sorry for the spelling mistakes im just writing and in a world of my own at the moment

Hi. 

I feel you but please don't put a time frame on this. 

My mother in law was diagnosed with stage 4 inoperable pancreatic cancer with NO treatment 13 months ago and is still with us. she was told 3 to 6 months. yes she is now bed bound and we have a live in carer as it's tough but the past year we have somehow managed to make special memories. despite the odds she walked her daughter ( my wife) up the aisle October last year, went to theatre in London to see phantom  of the opera and had Xmas with us, all of these we didn't think she would make. 

live everyday making memories but please don't put immense pressure on yourself, we did and we broke and hit rock bottom at one point but had family members to pick us both back up. yes it's hard but be strong. xx

Hi there,

I'm in a similar position with my mother, she has metastic ovaian cancer and she is also unable to walk after her last downward turn in early April 22 (a lung infection).  She has very little appetite but is still hanging on in there and was given 6 months in June 2021.

No-one knows how long, and there have been two occasions since Feb 22 when I thought she was nearing the end.

One question I have Michus is that you mention a live in carer - is this something you have organised yourselves and what do they do to assist your mother in law, are they there 24/7?  My mother is in a care home right now and I would be interested in alternatives which could mean she can return to the home she loves.

xx

Hi Fezza

So sorry to hear you are going through something similar, it really is awful.

my mother in Laws wish was to be at home and not a care home, the live in carer lives with us 24/7, you need to ensure you have a spare room in the house for them, my mum in law ended up in sobel house and from there wanted to come home, they put a system in place, the house had to be assesssed etc a hospital bed brought in before she could come home.

Has you mum got a palative team assigned to her? If so its worth asking as if its your mums wishes to be at home I cant see how you cant make it happen with a bit of hard work, just be mindful that its tough having your loved ones at home, your life is turned upside down but its worth it.

Hope this helps.

ps my mother in law has now caught covid :( xx

Thanks Michus.  She was at home for a while but we found it difficult to cope as I'm an only child and my aunt who also tried to help is not in great health.  We didn't receive much advice or support from her pallative care team - the hospice - who told me they couldn't do anything as she was not bad enough, and their advice to my stress was to go out with a girlfriend for a bottle of wine!  Really not helpful.  We were never offered any kind of assessment - who is it that would do this?  The GP and district nurses only offered the team to change her but she remained bedridden and couldn't be left alone - we paid for a night sitter part of the time but my mother was not keen.  I feel pretty let down by the whole system, and it would be great to know if there is another option.

Yes, my mother had covid and pneumonia in Feb 22 she did recover though, it's only this recent chest infection which as made her so week that she can't walk, she's also very confused so the GP suspects the cancer could have spread to the brain...

Sending you strength xx

Hi Fezza, sorry for the late reply, have had a tired day as  too have the dreaded covid atm!

I feel you when you say you have felt let down, us too, we pushed and pushed.

Unfortuantely for mother in law but fortunate for us she ended in sobell house, got told 2 to 3 days to 2 weeks to live but that was back in october so they said for her to go home and be at peace so it was them who got the ball rolling with care.

has your mum been told she has long to live? sorry for the hard question but in our circumtances this was the case so had continuous care at home which is now in process of going over to social live in care.

Keep hassling your Mums palative care team and keep calling doctors and say its her wish to be at home.

Sending positive vibes xx