My mum was first diagnosed with cervical cancer 12 years ago, she had a radical hysterectomy. 10 years ago she had cancer of the vagina stage 2,she batteled through radio and chemo…4 years ago we found out she had lung cancer..it was a new cancer..we were gutted.mum still bravely marched forward and had her who lung removed…just whwn we thought everything was ok it came bk in her other lung and brain. They told us she woukd only live for 2 weeks if we didnt operate. At first mum refused treatment but then went for surgery and gammer radio…a brave lady i know..now there isnt anything else they can do and shes under pallative care. She has good days and bad..but is slowly sinking…to add to this my dad has been diagnosed with colon cancer.mri yet to be done…its so hard seeing them go through this and i hate seeing them suffer..im finding it all really hard to accept and understand..i just want them to be safe and happy…its all so hard to deal with. I am married and have achild but i cant concentrate on anything else…
My heart goes out to you, my dad has colon cancer and I know how I feel but to have both parents so ill is almost unbearable. I wonder what kind of support you have. Do you have good friends you can talk to and who don’t mind if you, as I find I do, say the same things again and again. I know you posted three weeks ago and things could be different now but if you have time let us know how things are for you and remember to use this site if you need to get anything off your chest x
Hi anu10,
My heart goes out to you - although that doesn’t help you.
Your mum seems to have been very brave and very unlucky, and I can understand why you write ‘im finding it all really hard to accept and understand’. I think it is impossible ‘to understand’ and accepting it, is very difficult, and very hard indeed.
I can’t help - but I think Sapphire might have written something useful.
Thank you for replying… i feal like my head is going to blow..its like life has come to a stand still and all around me is cancer cancer…mum had severe new pain in her back saturday i had to take her to hospital. Chances are some of her cancer has gone near her shoulder blade. They just cant seem to get the pain under control which worries me..i can tell looking at her she slipping away.shes withdrawn. …gets angry quickly..not eating as much…more pain…its just so cruel that familiy have to see this. Its like someone stabbing you and twisting the knife round..dads getting his treatment plan thursday but hes just lost all hope in everything after seeing mum go down…
Sorry i didnt answer i have amazing friends but im finding im pushing them away at the minute and want to be alone. Everything just seems to irritate me and i find myself repeating it again and again…
Just answer when you are ready that’s not a problem. You have so much to cope with I can understand why you would want some time to yourself. I also find myself irritated by things and when I really think about it they are things that don’t really matter. I am sure your friends understand and respect your wish to be on your own but don’t spend too much time alone. I don’t work now but go out most days. I find that Sundays are my worst days because I have too much time to think about what is going to happen next.
I hope your Mum’s pain becomes more manageable and your dad’s treatment plan brings some kind of comfort. I can’t say anymore except don’t push your friends too far away, you will need them, and although I don’t know you I do think of you and your family and wish you the best it can be.
Hi again anu10,
It is just an awful situation, all around.
Your mum is almost inevitably going to get ‘angry’ because of the pain she is in, and your dad is also almost inevitably going to ‘be depressed’ by what is happening - as for you, I hope you don’t you don’t fall apart completely under the strain (I’m sure you will be affected - I just hope, not ‘dreadfully affected’).
Your friends are probably in the difficult situation of not really knowing what to say, or how to offer to support you - being ‘inside these situations’ is not the same as ‘looking from the outside’.
I’m not - I suspect - all that ‘mentally robust’ (I had a bad experience around my mum’s death, and I was notably depressed for a couple of years - a brief description is online, but MC seems to have an ‘anonymity rule’ so I can’t [it seems] point you at the piece). But my experience was far less bad than yours: and what happened to me, definitely ‘left me damaged’.
One last point: do make sure that you and your mum are complaining to ‘the senior people’ (hospital consultants or the GP) about the lack of adequate pain relief which your mum is receiving - don’t just ‘comment to nurses about it’, comment to the more senior people about it.
Any society and healthcare system which cannot provide adequate [requested - there is a history of ‘deep sedation without getting permission from the patient’ in NHS behaviour, which isn’t on !] pain relief to people who are dying, is not humane (again, I could point at something I’ve written online about that, but doing so would seem to break the MC ‘anonymity’ rule).
When you wrote ‘They just cant seem to get the pain under control which worries me’ it took me back to when my mum was dying. She was mainly interested in dying at home (dad had died at home) but there was a spell for a couple of days when I could see that mum had got ‘head pain’ which was bothering her, and that bothered me: but my mum very quickly became ‘peacefully comatose’, which resolved it. But I must admit, during the couple of days when the pain was worrying me I spoke to the GP about pain relief, and it seemed less of a priority to the GP, than to me (although the situation was ‘quite confusing’). Whether a person wants pain relief or not, is down to the person suffering the pain (I asked a couple of times ‘Do you want to go to hospital - they might be able to get rid of the pain ?’ but my mum’s responses {nodding by this stage - although I think for a few days my mum could speak, but was choosing not to speak, and was ‘nodding’ instead} were ‘no’) - but it is not a nice thing, to see people you love in pain.
Mum was in hospital for 17 days..this pain started in her back they did mri etc and saw some cancer on her bsck bone…the same time mum fractured her arm.they put a metal rod in…shes home now but im not convinced pain is totally controlled..it scares me so much that she is going to carry on struggling till end of life.its so unfair…shouldnt be like this.
Hi anu10,
Ask the GP or Consultant about the pain relief thing, assuming your mum would like better pain relief than she is getting. There are complications, around pain relief - in particular, some nurses will not administer the full prescribed dose, if they think it might hasten the patient’s death - and I’ve also seen some nonsense written about ‘pain scoring’. Pain is felt, so the patient ‘scores the pain’ in my opinion.
It strikes me, that Mark (or someone else writing for MC on this website) should have a view on ‘pain and how well it should be controlled’ in your mum’s situation ?
I’d echo what’s already been said here about talking to your mothers GP or Oncologist about pain management for her, they’re the people who know her case and are able to make the decisions about that.
Also has your mother been referred to a specialist nurse, either from Marie Curie or Macmillan? If not I’d also ask about this when you’re talking to the GP/Oncologist as they can help both your mother plus you and your family as well.
We’ve also got some general information on controlling pain and pain relief and common side effects that I’d recommend reading plus two short videos where Dr Peter Nightingale talks on the subject. I hope they’re a useful resource to check before you have the conversation about this.
Thank you… Yes she has macmillian nurse i have told them and they are in contact with her…she spent 17 days in hospital where the docs tried different pain medications. Thanks for the videos… I just pray now that mums suffering stops and she’s comfortable and happy. ..when i sit down and try and think of happy times with my parents all i can think of is cancer related events.. Dads 2nd week of bowel c treatment..im on that cancer role coaster again…
Hi again anu10,
All I can do, is the rather pointless ‘offering of sympathy’.
You and your loved-ones are in what can only be described as ‘a truly horrible situation’.
The professionals are likely to say ‘try to stay positive’ but while that is probably good advice, I’m loath to give it because personally I’m grumpy and not at all good at ‘staying positive’.
I’m really sorry, that despite all of this expert involvement, you think your mum is still in pain - but beyond asking the senior doctors and experts, I don’t see what else anybody could do, in your situation.
And I would like to thank Mark for his rapid contribution.
My father has been terminally ill for a number of years now. At first it wasnt so bad but gradually he’s declined. He has diabeted and is now in end stage renal failure and only recently been diagnosed with calciphylaxia. This illness is very rare. Youve got more chance of winning lottery than getting this. The only way to treat it is with dialysis, it slows it down but sometimes dialysing jus doesnt work anymore. Basically my dad is now in a hospice. Theyve given him new pain meds (a high dose patch on his arm) today at the hosp he was kicking off because he was lucid, confused and hallucinating. Long story short, this carried on for a few hours and i chose to accompany him in the bariatric ambulance to the hospice. He likes the hospice cos he gets treat better but these new pain high dose pain med has really messed with him. The doctor said they would lower it but it was truly heartbreaking to watch and to know he was confused and lost in himself. I would not wish it on my worst enemy. I’m a single mother of 2 young boys and once theyre in bed, ive jus cried constantly. I’m so alone cos i literally only have family but they deal with this in their own way. I’m so terrified of losing my dad but i jus cant bear to see him suffer anymore. I dont believe in god but i prayed tonight and begged for the suffering to stop and let him be himself again. I think i said please over a hundred times. Life truly is unfair and cruel.
Hi…I’ve haven’t been on line for a long time…unfortunately in October after all my praying etc I lost my mum on 5th October. She was so brave …even the district nurses used to say..she wanted to live till the last day..mum wanted to be home and told me she didn’t want to be in a hospice..so I spent the last year living with my parents.my hubby bless really supported me. The last 2 weeks were not nice to see..they did warn me that having brain mets is hard to handle but all I could think of we mums wishes..the nurses..macmillian..careers were brillant but cancer is one horrible disease. It’s not nice to see your loved one like that But I can say the hospice and docs etc are amazing and so experienced they will make sure your dad comfortable. Some things are scary and I still remember. Spend as mum time as you can with your dad and keep telling him how much you love him..it’s true seeing them.like this at times you pray pls god take them..also to add to this exactly 3 weeks after mum dad passed away in hospital. He wasn’t with mum the 2 weeks before her death and also couldn’t make the funeral. His bowel cancer treatment left a massive open wound on his bottom..he couldn’t sit walk stand..he couldn’t eat..the open wound leaked.smelt. I used to run between the hospital and my mum at home..29th Oct dad got sepsis and passed away too..he wanted to be with my beautiful mum.. Even though they are together pain free and away from this horrible disease me and my sister are all alone… Now just trying to settle bk into life but it’s hard…I will pray for you all xx
I am truly sorry for your losses. My heart goes out to you. Its one of those things you can try to explain to people how it feels but you can’t cos words dont come close. I’ve been an emotional wreck past month and a half since hes been diagnosed. Calciphylaxia makes the veins and arteries calcify and blood can no longer go thru so the skin starts to go necrotic then eventually he’ll pass from sepsis. It spreaded slowly but only recently irs gotten worse. He had it in his stomach and groin area at first but now they think its gone to his bottom. He was blocked for 2wks. Today he seems a lot better jus a bit “drunk” (hes been singing and telling people he loves them) but nowhere near as bad as last night. The doctors admitted the pain patch on his arm was too high a dose so hes back to lower ones. He says hes not going back to the hospice and is going home (hes had to stay overnight due to low blood pressure). I dont want to lose my dad, nobody does do they but i cannot bear tl see him suffer. Its so indignifying and heartbreaking. I was truly heartbroken last night after i went to see him. My sister knew how upset i was so found me a few links to talk to people in same situation, hence why i’m on here. It’s one of those things where you question everything, like for me, my angry side says that you wouldnt put an animal thru suffering so why a human being? But then my other side says everyone deserves a chance at life. I am really sorry for your losses. I hope theyve both found peace and so have you. Thank you for replying, it means a lot.