Effing cancer is an effing effer, frankly
Discussion
ruggedscotty said:
TameRacingDriver said:
Update on my dad with liver cancer - to recap, it is terminal, and was given a prognosis of around 6 - 18 months depending on the success of the treatment. That was around a month ago.
By all accounts he hasn't been eating, and is getting increasingly tired, which is to be expected.
I saw him just over a week ago, he drove over with my mother to see us just before xmas, and he has aged considerably in a short space of time.
This morning my mother texted me to say that he was not good, unsteady on his feet and they've sold the car as he can no longer drive. I'll be seeing him this weekend.
I'd imagine that, by the sounds of things, he'll be lucky to last 6 weeks never mind 6 months.
From my point of view, I don't want either to suffer so if this is the end, then I hope he passes fairly quickly and with as minimal pain as possible, as he appears to have no quality of life now.
Will keeo you posted.
sorry to hear this, its never a good time. As you say hope that the pain is properly managed and that the relief comes soon. Its no way to live. I know that if I was in a smiliar position myself I would hope that there would be a way open to help nature along. its a horrific time for all concerned. By all accounts he hasn't been eating, and is getting increasingly tired, which is to be expected.
I saw him just over a week ago, he drove over with my mother to see us just before xmas, and he has aged considerably in a short space of time.
This morning my mother texted me to say that he was not good, unsteady on his feet and they've sold the car as he can no longer drive. I'll be seeing him this weekend.
I'd imagine that, by the sounds of things, he'll be lucky to last 6 weeks never mind 6 months.
From my point of view, I don't want either to suffer so if this is the end, then I hope he passes fairly quickly and with as minimal pain as possible, as he appears to have no quality of life now.
Will keeo you posted.
Sorry to hear that TRD.
Have the Palliative Care started to get involved yet? If not, try to get them involved.
Unlike the common misconception, they are not ther just for EOL care but can get involved at a much earlier stage.
We found them good for planning and prescribing meds, without having to bother the hospital or GP.
Plus once you’re in their system at easy to get hold of them for advice… etc.
Have the Palliative Care started to get involved yet? If not, try to get them involved.
Unlike the common misconception, they are not ther just for EOL care but can get involved at a much earlier stage.
We found them good for planning and prescribing meds, without having to bother the hospital or GP.
Plus once you’re in their system at easy to get hold of them for advice… etc.
wobert said:
Sorry to hear that TRD.
Have the Palliative Care started to get involved yet? If not, try to get them involved.
Unlike the common misconception, they are not ther just for EOL care but can get involved at a much earlier stage.
We found them good for planning and prescribing meds, without having to bother the hospital or GP.
Plus once you’re in their system at easy to get hold of them for advice… etc.
Not sure, my parents seem to prefer to keep themselves to themselves, twas always thus. I'll ask the question though as I was thinking the same today.Have the Palliative Care started to get involved yet? If not, try to get them involved.
Unlike the common misconception, they are not ther just for EOL care but can get involved at a much earlier stage.
We found them good for planning and prescribing meds, without having to bother the hospital or GP.
Plus once you’re in their system at easy to get hold of them for advice… etc.
TRD, sorry to hear about your dad.
As you may recall my father also has end stage liver cancer, although he is too far along for any treatment. He seems to go through periods of not really eating - each time we have managed to get him back on some food (alongside the fortisips) and he makes a slight recovery.
I k ow what you mean by your parents keeping themselves to themselves, it was early 2023 when he was diagnosed and my parents have not yet engagement with the palliative care team!
We have an appointment with the nurse on Thursday, the last one was over 6 months ago.
As you may recall my father also has end stage liver cancer, although he is too far along for any treatment. He seems to go through periods of not really eating - each time we have managed to get him back on some food (alongside the fortisips) and he makes a slight recovery.
I k ow what you mean by your parents keeping themselves to themselves, it was early 2023 when he was diagnosed and my parents have not yet engagement with the palliative care team!
We have an appointment with the nurse on Thursday, the last one was over 6 months ago.
Scrump said:
TRD, sorry to hear about your dad.
As you may recall my father also has end stage liver cancer, although he is too far along for any treatment. He seems to go through periods of not really eating - each time we have managed to get him back on some food (alongside the fortisips) and he makes a slight recovery.
I k ow what you mean by your parents keeping themselves to themselves, it was early 2023 when he was diagnosed and my parents have not yet engagement with the palliative care team!
We have an appointment with the nurse on Thursday, the last one was over 6 months ago.
Yeah I get the impression he has good and bad days, but overall it does seem like the trend is downwards.As you may recall my father also has end stage liver cancer, although he is too far along for any treatment. He seems to go through periods of not really eating - each time we have managed to get him back on some food (alongside the fortisips) and he makes a slight recovery.
I k ow what you mean by your parents keeping themselves to themselves, it was early 2023 when he was diagnosed and my parents have not yet engagement with the palliative care team!
We have an appointment with the nurse on Thursday, the last one was over 6 months ago.
I know they're trying to shield me from it, they were like this with my grandparents, and truth be told, they're quite introverted anyway. I doubt I ever get the full picture, but all I can do is be here when they need me.
Haven't posted in a bit, and curious how everyone is holding up?
My second immunotherapy infusion put me in Peterborough hospital and then Adenbrooks for Christmas and New Year. Treatment induced colitis is the most common side effect but it was a looooong 13 days inside and being around some very unwell people pushed my mental health a fair bit.
3 weeks of high dose steroids has stripped a lot of muscle off me, down 18kgs in 3 weeks and where i was 2 stairs at a time l, I'm having to pause half way.
Also running on 3hrs sleep a night, again steroids apparently but I'm getting loads of lego built
Next scan in 3 weeks, I really hope we see a change as it'll make the Christmas lock-in worth it. Told the more severe the reaction the better odds of a positive result so keep all things crossed.
Keep going best you can, definitely a marathon not a sprint
My second immunotherapy infusion put me in Peterborough hospital and then Adenbrooks for Christmas and New Year. Treatment induced colitis is the most common side effect but it was a looooong 13 days inside and being around some very unwell people pushed my mental health a fair bit.
3 weeks of high dose steroids has stripped a lot of muscle off me, down 18kgs in 3 weeks and where i was 2 stairs at a time l, I'm having to pause half way.
Also running on 3hrs sleep a night, again steroids apparently but I'm getting loads of lego built
Next scan in 3 weeks, I really hope we see a change as it'll make the Christmas lock-in worth it. Told the more severe the reaction the better odds of a positive result so keep all things crossed.
Keep going best you can, definitely a marathon not a sprint
Bernie_78 said:
Keep going best you can, definitely a marathon not a sprint
That is a great way to approach this. I am sure I am not the only one joining you in fingers crossed.
With regard to my father he had blood tests this week, first since April last year. Amazingly the results were the same as last time. Him being stable was the absolute best we could have hoped for, so he is now planning on where to go in February to escape the cold.
I had my 6 month checkup last week and all good so far, thats 6 months since my stem cell transplant so 7-8 months cancer free. I'm free of all medication and life is returning to normal as i'm back in work and planning a few trips and things I missed out on during my treatment.
I know another member on here was going through a similar treatment plan for Non Hodgkins Lymphoma as me but not seen any updates from him, hope he got through his treatment ok because the final Chemo and transplant was horrendous for me.
I know another member on here was going through a similar treatment plan for Non Hodgkins Lymphoma as me but not seen any updates from him, hope he got through his treatment ok because the final Chemo and transplant was horrendous for me.
Mikey G said:
I had my 6 month checkup last week and all good so far, thats 6 months since my stem cell transplant so 7-8 months cancer free. I'm free of all medication and life is returning to normal as i'm back in work and planning a few trips and things I missed out on during my treatment.
I know another member on here was going through a similar treatment plan for Non Hodgkins Lymphoma as me but not seen any updates from him, hope he got through his treatment ok because the final Chemo and transplant was horrendous for me.
Congratulations, Mikey.I know another member on here was going through a similar treatment plan for Non Hodgkins Lymphoma as me but not seen any updates from him, hope he got through his treatment ok because the final Chemo and transplant was horrendous for me.
Nice to see good news on here.
Mikey G said:
I had my 6 month checkup last week and all good so far, thats 6 months since my stem cell transplant so 7-8 months cancer free. I'm free of all medication and life is returning to normal as i'm back in work and planning a few trips and things I missed out on during my treatment.
I know another member on here was going through a similar treatment plan for Non Hodgkins Lymphoma as me but not seen any updates from him, hope he got through his treatment ok because the final Chemo and transplant was horrendous for me.
My nephew was asked if he would be willing to donate stem cells or bone marrow or something and his reply was to ask when and where?I know another member on here was going through a similar treatment plan for Non Hodgkins Lymphoma as me but not seen any updates from him, hope he got through his treatment ok because the final Chemo and transplant was horrendous for me.
24hrs before donating he was given some drugs to boost the levels of whatever it was they wanted to harvest which made his legs feel like they were filled with extra fizzy lemonade
Whatever it was they gave him resulted in the levels of what they needed being more than double the level required which was good news.
A few months later he received via the donation people a food hamper full of various goodies from the recipient.
He said receiving the hamper was a very nice gesture but he'd donated 'cos someone was in the s
t and needed help, the important bit was that the recipient had recovered. TL;DR?
Sign up for donation, the odds on you needing to donate are shorter then you think.
Tango13 said:
Mikey G said:
I had my 6 month checkup last week and all good so far, thats 6 months since my stem cell transplant so 7-8 months cancer free. I'm free of all medication and life is returning to normal as i'm back in work and planning a few trips and things I missed out on during my treatment.
I know another member on here was going through a similar treatment plan for Non Hodgkins Lymphoma as me but not seen any updates from him, hope he got through his treatment ok because the final Chemo and transplant was horrendous for me.
My nephew was asked if he would be willing to donate stem cells or bone marrow or something and his reply was to ask when and where?I know another member on here was going through a similar treatment plan for Non Hodgkins Lymphoma as me but not seen any updates from him, hope he got through his treatment ok because the final Chemo and transplant was horrendous for me.
24hrs before donating he was given some drugs to boost the levels of whatever it was they wanted to harvest which made his legs feel like they were filled with extra fizzy lemonade
Whatever it was they gave him resulted in the levels of what they needed being more than double the level required which was good news.
A few months later he received via the donation people a food hamper full of various goodies from the recipient.
He said receiving the hamper was a very nice gesture but he'd donated 'cos someone was in the s
t and needed help, the important bit was that the recipient had recovered. TL;DR?
Sign up for donation, the odds on you needing to donate are shorter then you think.
Credit to your Nephew for going through the harvesting.
Can relate to tge treatment being the biggest challenge.
A week after release, its really hit home how ill I was. My body has been consuming itself as couldn't absorb the vitamins etc it needed. Skin is loose like a pensioner, I could barely climb stairs and need a pause half way. All in I'm down 19kgs in 5 weeks.
It's such a surreal experience and an extreme example I'm told.
Sadly oncology team are already saying I can't have anymore immunotherapy as risk is just to high. Where this leaves me is a bit in limbo. My next scan is 4 weeks away where we'll hopefully see its worked. If not we're onto clinical trials.
Got a tough few days coming till my head settles back down
A week after release, its really hit home how ill I was. My body has been consuming itself as couldn't absorb the vitamins etc it needed. Skin is loose like a pensioner, I could barely climb stairs and need a pause half way. All in I'm down 19kgs in 5 weeks.
It's such a surreal experience and an extreme example I'm told.
Sadly oncology team are already saying I can't have anymore immunotherapy as risk is just to high. Where this leaves me is a bit in limbo. My next scan is 4 weeks away where we'll hopefully see its worked. If not we're onto clinical trials.
Got a tough few days coming till my head settles back down
Bernie_78 said:
Can relate to tge treatment being the biggest challenge.
I have been following your posts and your attitude to this is inspirational.This sentiment really rings true with me too - I was never actually feeling "ill", the treatment (and the mental impact of the diagnosis) were the real challenge; and I had very moderate side effects and a single low dose of chemotherapy, so not even on the same scale as you.
Good luck with it all.
DETTRB26 said:
billflin said:
Hi DETTRB26
I'm sorry to hear this. There are a few of us on here that have had testicular cancer, which you may have seen from earlier in the thread. I was very fortunate in that mine was caught early and I elected to have a single round of chemotherapy post surgery, so I can empathise with your situation but can't offer much advice I'm afraid. I hope that your chemo continues to go reasonably OK, and I am sure that you are aware that the long term prognosis for TC is overwhelmingly good.
You mention the mental strength, and I agree. I have taken advantage of some post-treatment counselling which I have found helpful, but ultimately it is a hugely stressful experience and I have been told that TC in particular hits people quite hard, perhaps because it tends to affect younger men who may not have faced ill-health before.
Don't hesitate to post anything here that you feel like - I have found this thread to be very helpful, and I doubt that anything you are feeling or thinking hasn't been felt or thought by others before you.
You have my very best wishes.
Thanks, I did read your experiences and noted that you had some support which is an option to me via my critical illness cover as well as the usual charities etc. Right now I have very supportive wife and family and am keeping pretty upbeat. I have some concerns about aches in my other ball, everything still 'works' so to speak which has 100% helped with the loss of part of me, but I think its the longer term prognosis that's hanging over me. Cannot control that now so just focussing on recovering after each chemo session, the initial week was tough with brain fog, tinnitus, slightly blurry eyesight and very painful stomach cramps, but after about 6 days all was much better. No hair loss or sickness so far so am mentally ready for the next one and feel lucky / guilty in some ways that it hasn't hit me as bad as some other folks.I'm sorry to hear this. There are a few of us on here that have had testicular cancer, which you may have seen from earlier in the thread. I was very fortunate in that mine was caught early and I elected to have a single round of chemotherapy post surgery, so I can empathise with your situation but can't offer much advice I'm afraid. I hope that your chemo continues to go reasonably OK, and I am sure that you are aware that the long term prognosis for TC is overwhelmingly good.
You mention the mental strength, and I agree. I have taken advantage of some post-treatment counselling which I have found helpful, but ultimately it is a hugely stressful experience and I have been told that TC in particular hits people quite hard, perhaps because it tends to affect younger men who may not have faced ill-health before.
Don't hesitate to post anything here that you feel like - I have found this thread to be very helpful, and I doubt that anything you are feeling or thinking hasn't been felt or thought by others before you.
You have my very best wishes.
Mikey G said:
I had my 6 month checkup last week and all good so far, thats 6 months since my stem cell transplant so 7-8 months cancer free. I'm free of all medication and life is returning to normal as i'm back in work and planning a few trips and things I missed out on during my treatment.
.
Excellent news; long may it continue. I'm now 3+ years on from auto SCT and it all seems a distant memory. It really is a place that up until a year or so ago I never thought I'd achieve. Any odd ache or pain, bit too warm in bed etc was this a sign I had relapsed?.
I did not even do Ritux follow up so have been med free for the whole time. Agreed with the consultant back in November that aside from self-monitoring we'll just do an annual blood test.
I do hope you have a similar experience and enjoy many more years of remission.
TameRacingDriver said:
Speaking of treatment, my dad with terminal liver cancer has decided to stop the treatment as it was causing more problems than it solved - basically it wasn't working. So unfortunately I guess this will be the beginning of the end.
Sorry to hear that 
My dad gets his results on monday from various tests but sounds 99% certain that he has prostate cancer, just hope it hasn't spread anywhere else of course as prostate looks to be reasonably treatable.Gassing Station | Health Matters | Top of Page | What's New | My Stuff