Good luck and look forward to some positive news. Take care.
You are clearly more sensible than I was. I didn’t phone the hotline and struggled over the weekend until my regular chemo slot, ended up in hospital for 4 days. Radio and Chemo together is not something I would wish on anyone. Fingers crossed the new meds are more effective.
My cancer journey started with being unable to go the toilet and ending up in A & E in May 2022. Had an op to remove a 15cm cyst which they couldn’t do as it would have involved removing my bowel, bladder and prostate. I wasn’t prepared to have it all removed. When they opened me up the cyst was attached to all 3 organs, so they drained it down and leaving a 9 inch scar. Then they followed it up with chemoradiation. This burnt my rectal passage and was on laxatives and morphine for several months. Then was giving all clear July 2023. October 2023 spread to liver and now to lung as well. Now diagnoses metastatic cancer, which I have been told is incurable. They call it palliative care.
I am hopeful and believe with positivity and trying to live well that living more than the 2 years they have given me is possible. Some with metastatic cancer go on for longer.
I have my first appointment on the 13th of February with my Haematologist after being diagnosed with leukaemia late last year. It’s the waiting that I find difficult.
Seems there’s a few here that are facing similar challenges.
I can’t speak for the whole forum, but I would be happy to be included… Flights are affordable. May I please be informed about the date of this eventual meeting?
Thanks, and a spiritual hug.
M.
Are you getting corticosteroids? (reduces feeling ill etc)
Yes,
So three days of steroids and antisickness meds. Then no meds until next round which is now almost two weeks. I have managed to do physical work without any big issues for last few days.
Hopefully things will ease up now. I was told first few days would be bad. They could have been worse and when I was vomitting I thought here we go again. But the Omeprazole which the 24 hour helpline was in my medicine cabinet so it eased things up within an hour.
Good luck @Pete_the_painter. Have you been given a prognosis or are things very unknown?
The thing I have found is the situation constantly changes and it has seemed that at one point I was cured, then was told that cancer had come back and likely to be incurable. Then liver specialist suggested it could be cured in liver. Then it turns up in the lung. Until very recently I thought I was having liver surgery. Within a week of seing consultant I am now on 18 week chemo programme.
The great thing here is to talk about it. Yes, I am scared! But I am determined to live as long as possible.
Good luck Pete.
You would be welcomed with open arms Max. I don’t know what kind of group Naim HQ can accommodate. Richard would have to work something out. I think if invited alot on here would want to go.
Let’s see what he can do.
I think as a group the Naim forum becomes stronger for talking about health. I feel it has has brought us closer. And now we want to meet up!
No just at the diagnosis stage, I originally ignored it which has put everything back a month (yes I know). I have some symptoms but unsure of what treatment or outcome.
Hi Dan. Having survived Pancreatic Cancer (had a Full Whipple and 7 months of chemo) then had my Prostate removed because it was stage 4 and then finally Bowel Cancer with two tumours removed and part of my Bowel removed followed by chemo I know what you are going through. It is not easy but being surrounded by good friends and family and staying positive like you are doing will get you through this. Also Ginger! Making tea with Ginger root or drinking Ginger Ale helps with the nausea I found.
Looking forward to hearing about your visit to Naim HQ and how you might just get back on the conveyor belt and begin thinking about possible upgrades as a result of your time spent in Salisbury. Take care, Steve
Since I have been talking about cancer on this forum so many of you have been talking about it and your stories. I find it helps me come to terms with the illness by talking about it on here, where I feel among friends with shared interests and passions!
One of the things I have been doing is getting my Naim/Linn system as good as possible. I am also starting to make the rest of my house look more presentable and getting rid of clutter and buying suitable storage to make my ground floor look clearer.
Steve, you are a legend to still be alive going through all of that. How long has all this been going on?
That’s true, we’ve been putting off doing our wills for years least that’s now sorted.
It makes you rethink a lot of things and also makes you realise how much family and friends mean to you.
You’ll enjoy your factory tour and I hope you get as good of bunch of guys as I did to share it with.
I have sorted out my will which was quite complicated with 4 kids, 2 with special needs with autism.
I am basically getting everything in order as much as possible to make the best of things.
We have 2 kids each (from different marriages) and 11 grandkids. Lucky they all like each other and they agreed to leave it the hands of our eldest son.
Hi Dan.
I had my Pancreatic Cancer in 2003. Prostate Cancer in 2008 and my Bowel Cancer in 2022. I retired from work in July 27th (Wednesday) the following Tuesday I was under the knife. Brilliant start to my Retirement! I was a teacher for 45 years and thought I had earnt a well deserved rest but as they say…the best laid plans of mice and men are filed away somewhere… I started working part time as a DT Technician at a local school as a way of a distraction whilst I was in the latter stages of my chemo when I had got used to its effects and I knew what I was capable of doing. I got my all clear at the end of October last year but will have four more follow ups to keep an eye on me. Getting the all clear was the most amazing feeling because it meant I could plan to do things with my life. Everything had been on hold up until then. I got the all clear on a Tuesday and on the Friday I went to Florida to see my daughter and Grandson. I could not get Travel Insurance until I got my all clear and could not afford to risk travelling to the States without it.
Thanks for sharing your story here. That is a complete inspiration for me. The fact that you have lived with cancer for so long is incredible.
You see, this is the thing, I am 50 years old and feel I only half way through. When told I have 2 years I am determined to do whatever it takes to live longer.
So what’s your secret to survival apart from ginger tea, and friends and family?
Dan! I did everything that you are currently doing by decluttering my house of things that I had kept just in case one day I might need them. Things that I really did not need. I sorted out my Will and gave my daughter all my Passwords and Logins and various bank details etc. It needed to be done but I had been putting it off for far too long.
Not sure that there is a secret to share but I do genuinely believe that despite my setbacks that I have been incredibly lucky. I have got some great friends and family who have kept me going. Never give up. Ever.
Steve
Steve, that is the best advice ever. Never give up, no matter what the odds are.
Maybe luck will come my way. I bloody well hope so
What I will say is having cancer has made me stronger mentally and emotionally, more open and more compassionate and understanding. So maybe in a strange way it’s offered an insight.
I am single but I am putting me and my kids first. Providing for their future and living as long as possible to see them grow up is one of the many things that keeps me going.
I am also meeting up with friends and talking to them more. Although having said the chemo is going to make it more difficult to socialise with my immunity!
Thanks again Steve. You have made me inspired and made my day.