paranoid android Posted August 23, 2021 Share Posted August 23, 2021 17 hours ago, Jimi Shandrix said: The last time I was in here I'd had some encouraging news regarding treatment. Unfortunately this rug was pulled out from under me and all they can do now is give me radiotherapy to slow things down. I start a week's worth of it tomorrow. So, apparently I've got a year to live. Maybe a bit less, maybe a bit more. I'm absolutely devastated for my partner of 16 years and my Dad. From a personal point of view, now that I've got my head around things a bit, positive thinking is really important and I am heartened by experiences like that of @Honest Saints Fan a couple of pages back. Beginning to look into alternative medicines. If anyone has any ideas on that, give me a shout. Jimi - I'm so sorry to hear this. My pal's father-in-law has cancer, and has lived longer than the family had been told to expect. He has an amazing spirit, and the family take turns to take him for a walk in the hills everyday, which is his favourite thing to do. Got everything crossed for you, Jimi - good that you are looking at alternative medicines and staying positive. My very best wishes to you, sir. 1 Quote Link to comment Share on other sites More sharing options...
Popular Post Jimi Shandrix Posted August 23, 2021 Popular Post Share Posted August 23, 2021 25 minutes ago, Elric said: Sorry to hear your news, make everyday count. Friend had liver cancer and was helped by this. Proton Beam Therapy or Photodynamic Therapy. Don't know if you have heard of it but may be worth investigating. Everything is at this time. Best wishes. "Photodynamic Therapy (PDT) kills cancers by starving the cells of oxygen, and uses light to activate a chlorophyll-like drug. The song’s lyric tells the story of a man dying of cancer, wanting and knowing that PDT is his best chance of defeating his killer disease. PDT is a single, one-off treatment cancer treatment where tumours are killed within minutes. It is a treatment that can be repeated without any toxic damage to the body, and few sides effects, compared to radiotherapy and chemotherapy. PDT can also be an alternative to surgery. PDT is available now for skin, head and neck, mouth, oesophageal and some lung cancers on the NHS now. But the potential for PDT to successfully treat other cancers and conditions means that £50m has to be raised to fund the trials. Breast, cervical, prostate, bile duct, brain, throat, bladder and stomach cancers are on the target list. So is PDT for arterial disease and MRSA." Cheers mate. I asked the question about the Proton Beam Therapy but it's not suitable for everybody and it wasn't suitable for me. I'm just back from my first blast of radiotherapy and it was grand. Away out for a wee walk in the sunshine now. Thank you everyone for your kind messages. 24 Quote Link to comment Share on other sites More sharing options...
Jacksgranda Posted August 23, 2021 Share Posted August 23, 2021 18 hours ago, Jimi Shandrix said: The last time I was in here I'd had some encouraging news regarding treatment. Unfortunately this rug was pulled out from under me and all they can do now is give me radiotherapy to slow things down. I start a week's worth of it tomorrow. So, apparently I've got a year to live. Maybe a bit less, maybe a bit more. I'm absolutely devastated for my partner of 16 years and my Dad. From a personal point of view, now that I've got my head around things a bit, positive thinking is really important and I am heartened by experiences like that of @Honest Saints Fan a couple of pages back. Beginning to look into alternative medicines. If anyone has any ideas on that, give me a shout. That's awful news after the progress you were making. So sorry to hear this 1 Quote Link to comment Share on other sites More sharing options...
scottsdad Posted August 23, 2021 Share Posted August 23, 2021 Nothing eloquent I can add. All I can do is wish you the very best @Jimi Shandrix 1 Quote Link to comment Share on other sites More sharing options...
Honest Saints Fan Posted August 23, 2021 Share Posted August 23, 2021 Best wishes @Jimi Shandrix Hoping the radiotherapy helps! Can't help with alternative medication but my "cancer pals" love a bit of turmeric or CBD oil. I've not ventured into that territory yet! As others have said, just enjoy and savour every moment. When I was told I was incurable the one thing I did was take photos. Even when I felt and looked like shite. I have 2 young children and I obviously hope to see them grow up but at least they will have approx 35 million pictures and videos to sort through when they grow up Oh and you don't have to be positive all the time. It's okay to feel shite. It's okay to be angry and it's okay to hate the world and the hand you've been dealt. 6 Quote Link to comment Share on other sites More sharing options...
Adamski Posted August 23, 2021 Share Posted August 23, 2021 Ah, man. I'm so sorry to read this, @Jimi Shandrix . All the best to you and your loved ones. Whatever happens, take care of each other and hope that you all have the chance to make some happy memories. 1 Quote Link to comment Share on other sites More sharing options...
Tony Ferrino Posted August 23, 2021 Share Posted August 23, 2021 Good luck Jimi. We've all heard stories of folk defying the odds. X 1 Quote Link to comment Share on other sites More sharing options...
Jimi Shandrix Posted August 23, 2021 Share Posted August 23, 2021 Thanks everyone. Feeling strong like bull. Plan on hanging around for a long time yet. 15 Quote Link to comment Share on other sites More sharing options...
Ad Lib Posted August 24, 2021 Share Posted August 24, 2021 On 22/08/2021 at 20:18, Jimi Shandrix said: The last time I was in here I'd had some encouraging news regarding treatment. Unfortunately this rug was pulled out from under me and all they can do now is give me radiotherapy to slow things down. I start a week's worth of it tomorrow. So, apparently I've got a year to live. Maybe a bit less, maybe a bit more. I'm absolutely devastated for my partner of 16 years and my Dad. From a personal point of view, now that I've got my head around things a bit, positive thinking is really important and I am heartened by experiences like that of @Honest Saints Fan a couple of pages back. Beginning to look into alternative medicines. If anyone has any ideas on that, give me a shout. That’s grim, Jimi. These setbacks are always hard. I hope the treatment does some good and that it doesn’t take too much out of you. 1 Quote Link to comment Share on other sites More sharing options...
Ad Lib Posted August 24, 2021 Share Posted August 24, 2021 A few weeks ago dad had a funny turn and woke up saying he couldn’t see. Cue a trip to the Beatson and they put him on some steroids and pause his chemo. Steroids did the world of good getting his symptoms back under control. Actually put him in a better place outwardly than he’d been when he was down here with mum a couple of months back. The kick in the stones though is that they did a follow up scan and his tumour isn’t just resisting the chemo; it’s now spread to the right side of his brain, including the area responsible for vision (explaining his sight and reading issues). They’ve permanently discontinued the chemo and we are now into end of life chat and overtly palliative care. We’ve been lucky in some senses: he’s still physically quite fit and he’s now gone beyond the 18 months they gave him last March, but it’s only going to get harder from here on in. They’ve *finally* started getting community nurse support coming in to help mum with him which seemed to take forever. All just a bit shit really, but nothing we didn’t expect. 0 Quote Link to comment Share on other sites More sharing options...
Jimi Shandrix Posted August 24, 2021 Share Posted August 24, 2021 31 minutes ago, Ad Lib said: A few weeks ago dad had a funny turn and woke up saying he couldn’t see. Cue a trip to the Beatson and they put him on some steroids and pause his chemo. Steroids did the world of good getting his symptoms back under control. Actually put him in a better place outwardly than he’d been when he was down here with mum a couple of months back. The kick in the stones though is that they did a follow up scan and his tumour isn’t just resisting the chemo; it’s now spread to the right side of his brain, including the area responsible for vision (explaining his sight and reading issues). They’ve permanently discontinued the chemo and we are now into end of life chat and overtly palliative care. We’ve been lucky in some senses: he’s still physically quite fit and he’s now gone beyond the 18 months they gave him last March, but it’s only going to get harder from here on in. They’ve *finally* started getting community nurse support coming in to help mum with him which seemed to take forever. All just a bit shit really, but nothing we didn’t expect. I'm so sorry you and your family are going through this. I'm glad you've finally got the community nurses coming in to give your mum a hand. They do an incredible job. Up until two months ago, I was a support worker in the community mainly on nights and saw first hand what they do. They are seriously undervalued and the system is stretched to breaking point. There really is nothing anyone can say in this situation to make anything better but just try to focus on the good times. Best wishes. 3 Quote Link to comment Share on other sites More sharing options...
Jimi Shandrix Posted August 31, 2021 Share Posted August 31, 2021 Had a week of radiotherapy last week. About 15 mins a day. The first 3 days were a breeze. I was wondering what all the fuss was about. I found out in the last 2 sessions. It was like I had a bad case of sunburn front and back of my neck. The pain was pretty awful and is continuing now. Hopefully after this week, it will calm down a little and I'll be a bit less tired. I get a scan in a few weeks to see if the b*****d tumour has shrunk any. Staying positive and keeping on keeping on. Thanks to all the fine PnB'ers who have sent me DM's. It is greatly appreciated. 14 Quote Link to comment Share on other sites More sharing options...
scottsdad Posted August 31, 2021 Share Posted August 31, 2021 1 minute ago, Jimi Shandrix said: Had a week of radiotherapy last week. About 15 mins a day. The first 3 days were a breeze. I was wondering what all the fuss was about. I found out in the last 2 sessions. It was like I had a bad case of sunburn front and back of my neck. The pain was pretty awful and is continuing now. Hopefully after this week, it will calm down a little and I'll be a bit less tired. I get a scan in a few weeks to see if the b*****d tumour has shrunk any. Staying positive and keeping on keeping on. Thanks to all the fine PnB'ers who have sent me DM's. It is greatly appreciated. Hope it is doing the business Jimi. 2 Quote Link to comment Share on other sites More sharing options...
Jacksgranda Posted September 9, 2021 Share Posted September 9, 2021 Got my implant today and blood taken for PSA levels. Will have to ring my cancer nurse in December, as she told me I'd be on these implants for 2 or 3 years, and the 2 years will be up in December. 2 Quote Link to comment Share on other sites More sharing options...
welshbairn Posted September 9, 2021 Share Posted September 9, 2021 56 minutes ago, Jacksgranda said: Got my implant today and blood taken for PSA levels. Will have to ring my cancer nurse in December, as she told me I'd be on these implants for 2 or 3 years, and the 2 years will be up in December. Good luck with the PSA score. Mine has been hovering around 0.4 for the last 6 months having started at a huge 145. I'm on 6 monthly testosterone blocking jags for life I think, just too manly for my own good. 0 Quote Link to comment Share on other sites More sharing options...
Jacksgranda Posted September 9, 2021 Share Posted September 9, 2021 Just now, welshbairn said: Good luck with the PSA score. Mine has been hovering around 0.4 for the last 6 months having started at a huge 145. I'm on 6 monthly testosterone blocking jags for life I think, just too manly for my own good. I have never been informed what my PSA score is since I started my treatment in March last year. I'm not even sure if my GP gets the results, I'm assuming the cancer nurse/consultant gets them though. I'm working on the basis that if I'm not being contacted, all is well! 0 Quote Link to comment Share on other sites More sharing options...
welshbairn Posted September 9, 2021 Share Posted September 9, 2021 2 minutes ago, Jacksgranda said: I have never been informed what my PSA score is since I started my treatment in March last year. I'm not even sure if my GP gets the results, I'm assuming the cancer nurse/consultant gets them though. I'm working on the basis that if I'm not being contacted, all is well! Yup, no news is definitely good news! 1 Quote Link to comment Share on other sites More sharing options...
Popular Post Jimi Shandrix Posted October 7, 2021 Popular Post Share Posted October 7, 2021 Got my radiotherapy results back this week. They are as good as I could have hoped for in that there has been no deterioration. No miracle cure either unfortunately but I'm determined to last longer than the year I've been given. My meds have been tweaked this week and along with the cannabis oil (which may or may not be a placebo) I'm feeling pretty good. Broughty Athletic this weekend. Got to hang around long enough to see them in the Highland League. It's all about priorities. 29 Quote Link to comment Share on other sites More sharing options...
Honest Saints Fan Posted October 7, 2021 Share Posted October 7, 2021 2 hours ago, Jimi Shandrix said: Got my radiotherapy results back this week. They are as good as I could have hoped for in that there has been no deterioration. No miracle cure either unfortunately but I'm determined to last longer than the year I've been given. My meds have been tweaked this week and along with the cannabis oil (which may or may not be a placebo) I'm feeling pretty good. Broughty Athletic this weekend. Got to hang around long enough to see them in the Highland League. It's all about priorities. Glad the radiotherapy seems to be working for you! Saturday is my 3 year cancerversary 5 Quote Link to comment Share on other sites More sharing options...
engelbert_humperdink Posted October 7, 2021 Share Posted October 7, 2021 4 hours ago, Jimi Shandrix said: Got my radiotherapy results back this week. They are as good as I could have hoped for in that there has been no deterioration. No miracle cure either unfortunately but I'm determined to last longer than the year I've been given. My meds have been tweaked this week and along with the cannabis oil (which may or may not be a placebo) I'm feeling pretty good. Broughty Athletic this weekend. Got to hang around long enough to see them in the Highland League. It's all about priorities. Keep the positive mindset, may be mumbo jumbo but I honestly belive it makes a difference. Cbd oil should help with any pain thoigh on a subtle level. Keep on kicking on Jimi 1 Quote Link to comment Share on other sites More sharing options...
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