Effing cancer is an effing effer, frankly
Discussion
Siko said:
Sorry to hear about your chum passing at 46, but what a fabulous way of remembering him. I had two good friends who died of cancer in 2020 - my old friend Zak who was one of the most inspirational and human people I have ever met, sadly taken by a brain tumour at 46 aswell. The same year another old friend, Ruth, who was a high flying lawyer in the Australian Army, died of breast cancer only in her early 30s. Both were wonderful, otherwise extremely healthy and fit people who deserved far better than they got.
As I posted earlier on, I was diagnosed with tonsil and lymph node cancer a couple of months ago and had my op to remove the tonsils and affected lymph nodes at the start of Jul spending 5 days in my local NHS hospital. It was an uncomfortable but not too painful experience, although eating was extremely difficult/painful and is now pain free but still difficult. I have had a month away from work and am going back next week, I had my surgery results last week which was not all good news. I have nerve damage to my right lip, ankle/right foot (this is likely due to spending so long in hospital) and the right side of my head/neck/face. What this means is I fall over a bit as I keep catching my foot on things, I bite my lip when I chew, slur my speech and have a weird lopsided smile, both of these should fix themselves but sadly my head/neck/face nerve loss is permanent. Because the cancer had spread to the soft tissue, they could not remove it all and had to cut the main nerve to remove what they did get out. So the double whammy of they didn’t get all the cancer and I now have permanent nerve damage (feels like the right side of my head is made of plastic). However the small upside is they confirmed the variant of cancer I have is treatable…..and I have a fairly brutal treatment round planned.
I should meet my oncologist next week for the first time, where I find out what my chances are and exactly how the treatment is going to take place, where and when. The rough plan is hearing and dental assessment (the treatment will affect my hearing/teeth), face mask fitting, then day surgery to install a feeding tube into my stomach. Then at some stage probably in Sep I start 6 weeks daily radiotherapy with weekly chemotherapy. This will blister and burn my neck/throat such that after about 2-3 weeks I won’t be able to use my mouth and will have to use my tube for water, food and pain relief. The side effects will probably last for 3 weeks after the treatment stops too. It is totally overwhelming but I have met no the macmillan forums people who have been through similar experiences.
To be honest it’s terrifying too, we were meant to be on holiday this week (cancelled of course) and managed a day out yesterday to Anglesey, which was lovely. I sat on the beach watching my kids play and thought - is this the last holiday I’ll ever go on?
Hi Siko,As I posted earlier on, I was diagnosed with tonsil and lymph node cancer a couple of months ago and had my op to remove the tonsils and affected lymph nodes at the start of Jul spending 5 days in my local NHS hospital. It was an uncomfortable but not too painful experience, although eating was extremely difficult/painful and is now pain free but still difficult. I have had a month away from work and am going back next week, I had my surgery results last week which was not all good news. I have nerve damage to my right lip, ankle/right foot (this is likely due to spending so long in hospital) and the right side of my head/neck/face. What this means is I fall over a bit as I keep catching my foot on things, I bite my lip when I chew, slur my speech and have a weird lopsided smile, both of these should fix themselves but sadly my head/neck/face nerve loss is permanent. Because the cancer had spread to the soft tissue, they could not remove it all and had to cut the main nerve to remove what they did get out. So the double whammy of they didn’t get all the cancer and I now have permanent nerve damage (feels like the right side of my head is made of plastic). However the small upside is they confirmed the variant of cancer I have is treatable…..and I have a fairly brutal treatment round planned.
I should meet my oncologist next week for the first time, where I find out what my chances are and exactly how the treatment is going to take place, where and when. The rough plan is hearing and dental assessment (the treatment will affect my hearing/teeth), face mask fitting, then day surgery to install a feeding tube into my stomach. Then at some stage probably in Sep I start 6 weeks daily radiotherapy with weekly chemotherapy. This will blister and burn my neck/throat such that after about 2-3 weeks I won’t be able to use my mouth and will have to use my tube for water, food and pain relief. The side effects will probably last for 3 weeks after the treatment stops too. It is totally overwhelming but I have met no the macmillan forums people who have been through similar experiences.
To be honest it’s terrifying too, we were meant to be on holiday this week (cancelled of course) and managed a day out yesterday to Anglesey, which was lovely. I sat on the beach watching my kids play and thought - is this the last holiday I’ll ever go on?
Just read your post, I was diagnosed with base of tongue cancer (squamous cell carcinoma) stage 4,Feb 21. My subsequent treatment was 8 weeks daily radiotherapy with weekly chemo (Cisplatin) which seems similar to your treatment plan.
In all honesty the treatment is as brutal as you are being told but you do get through it but the recovery takes a long time, 1-2 years of which I'm coming upto my first year. Everybody is different in their recovery and no two people are the same, but I would be happy to talk to you privately about my experience . Some good contacts are Chris Curtis of the Swallows Charity (a head and neck cancer survivor) who offers a 24/7 help/advise line. and will also send you a pack of mouthwashes and other potions to help.
I was treated in Notts and they have a excellent after effects team( Emma Hallam) to help with the s
t you could be left with. I know not every NHS Trust has this facility but Notts will help you if needed. I also visit Maggies who have monthly meetings for head and neck survivors. My own story is a happy one so far with the treatment being successful, and being told I have no evidence of disease as of August 21. If you want to talk I'm happy to do so. Phil
Siko said:
Sorry to hear about your chum passing at 46, but what a fabulous way of remembering him. I had two good friends who died of cancer in 2020 - my old friend Zak who was one of the most inspirational and human people I have ever met, sadly taken by a brain tumour at 46 aswell. The same year another old friend, Ruth, who was a high flying lawyer in the Australian Army, died of breast cancer only in her early 30s. Both were wonderful, otherwise extremely healthy and fit people who deserved far better than they got.
As I posted earlier on, I was diagnosed with tonsil and lymph node cancer a couple of months ago and had my op to remove the tonsils and affected lymph nodes at the start of Jul spending 5 days in my local NHS hospital. It was an uncomfortable but not too painful experience, although eating was extremely difficult/painful and is now pain free but still difficult. I have had a month away from work and am going back next week, I had my surgery results last week which was not all good news. I have nerve damage to my right lip, ankle/right foot (this is likely due to spending so long in hospital) and the right side of my head/neck/face. What this means is I fall over a bit as I keep catching my foot on things, I bite my lip when I chew, slur my speech and have a weird lopsided smile, both of these should fix themselves but sadly my head/neck/face nerve loss is permanent. Because the cancer had spread to the soft tissue, they could not remove it all and had to cut the main nerve to remove what they did get out. So the double whammy of they didn’t get all the cancer and I now have permanent nerve damage (feels like the right side of my head is made of plastic). However the small upside is they confirmed the variant of cancer I have is treatable…..and I have a fairly brutal treatment round planned.
I should meet my oncologist next week for the first time, where I find out what my chances are and exactly how the treatment is going to take place, where and when. The rough plan is hearing and dental assessment (the treatment will affect my hearing/teeth), face mask fitting, then day surgery to install a feeding tube into my stomach. Then at some stage probably in Sep I start 6 weeks daily radiotherapy with weekly chemotherapy. This will blister and burn my neck/throat such that after about 2-3 weeks I won’t be able to use my mouth and will have to use my tube for water, food and pain relief. The side effects will probably last for 3 weeks after the treatment stops too. It is totally overwhelming but I have met no the macmillan forums people who have been through similar experiences.
To be honest it’s terrifying too, we were meant to be on holiday this week (cancelled of course) and managed a day out yesterday to Anglesey, which was lovely. I sat on the beach watching my kids play and thought - is this the last holiday I’ll ever go on?
Si, just read the thread, holy fAs I posted earlier on, I was diagnosed with tonsil and lymph node cancer a couple of months ago and had my op to remove the tonsils and affected lymph nodes at the start of Jul spending 5 days in my local NHS hospital. It was an uncomfortable but not too painful experience, although eating was extremely difficult/painful and is now pain free but still difficult. I have had a month away from work and am going back next week, I had my surgery results last week which was not all good news. I have nerve damage to my right lip, ankle/right foot (this is likely due to spending so long in hospital) and the right side of my head/neck/face. What this means is I fall over a bit as I keep catching my foot on things, I bite my lip when I chew, slur my speech and have a weird lopsided smile, both of these should fix themselves but sadly my head/neck/face nerve loss is permanent. Because the cancer had spread to the soft tissue, they could not remove it all and had to cut the main nerve to remove what they did get out. So the double whammy of they didn’t get all the cancer and I now have permanent nerve damage (feels like the right side of my head is made of plastic). However the small upside is they confirmed the variant of cancer I have is treatable…..and I have a fairly brutal treatment round planned.
I should meet my oncologist next week for the first time, where I find out what my chances are and exactly how the treatment is going to take place, where and when. The rough plan is hearing and dental assessment (the treatment will affect my hearing/teeth), face mask fitting, then day surgery to install a feeding tube into my stomach. Then at some stage probably in Sep I start 6 weeks daily radiotherapy with weekly chemotherapy. This will blister and burn my neck/throat such that after about 2-3 weeks I won’t be able to use my mouth and will have to use my tube for water, food and pain relief. The side effects will probably last for 3 weeks after the treatment stops too. It is totally overwhelming but I have met no the macmillan forums people who have been through similar experiences.
To be honest it’s terrifying too, we were meant to be on holiday this week (cancelled of course) and managed a day out yesterday to Anglesey, which was lovely. I sat on the beach watching my kids play and thought - is this the last holiday I’ll ever go on?
k mate, if you need any local help send me a message, best of luck mateM3user said:
Hi Siko,
Just read your post, I was diagnosed with base of tongue cancer (squamous cell carcinoma) stage 4,Feb 21. My subsequent treatment was 8 weeks daily radiotherapy with weekly chemo (Cisplatin) which seems similar to your treatment plan.
In all honesty the treatment is as brutal as you are being told but you do get through it but the recovery takes a long time, 1-2 years of which I'm coming upto my first year. Everybody is different in their recovery and no two people are the same, but I would be happy to talk to you privately about my experience . Some good contacts are Chris Curtis of the Swallows Charity (a head and neck cancer survivor) who offers a 24/7 help/advise line. and will also send you a pack of mouthwashes and other potions to help.
I was treated in Notts and they have a excellent after effects team( Emma Hallam) to help with the st you could be left with. I know not every NHS Trust has this facility but Notts will help you if needed. I also visit Maggies who have monthly meetings for head and neck survivors. My own story is a happy one so far with the treatment being successful, and being told I have no evidence of disease as of August 21.
If you want to talk I'm happy to do so. Phil
Thanks Phil that's good to hear and appreciate your personal experience. I'm seeing the oncologist tomorrow for the first time and just hanging on his words to hear that he can treat me given they didn't get it all....after that I'm joining in every group going if it looks positive! A mate is a surgeon who had cancer and told me the worst part of the whole experience for him was the wait for the surgery results as it is so important to get all the cancer out - which is what didn't happen to me sadly. That said I have met a number of people who had similar/worse and have recovered ok after the brutal treatment. The impression I get is that the treatment is pretty bad but the chance of success is high....I hope I am right. Just read your post, I was diagnosed with base of tongue cancer (squamous cell carcinoma) stage 4,Feb 21. My subsequent treatment was 8 weeks daily radiotherapy with weekly chemo (Cisplatin) which seems similar to your treatment plan.
In all honesty the treatment is as brutal as you are being told but you do get through it but the recovery takes a long time, 1-2 years of which I'm coming upto my first year. Everybody is different in their recovery and no two people are the same, but I would be happy to talk to you privately about my experience . Some good contacts are Chris Curtis of the Swallows Charity (a head and neck cancer survivor) who offers a 24/7 help/advise line. and will also send you a pack of mouthwashes and other potions to help.
I was treated in Notts and they have a excellent after effects team( Emma Hallam) to help with the s
t you could be left with. I know not every NHS Trust has this facility but Notts will help you if needed. I also visit Maggies who have monthly meetings for head and neck survivors. My own story is a happy one so far with the treatment being successful, and being told I have no evidence of disease as of August 21. If you want to talk I'm happy to do so. Phil
Madness60 said:
Si, just read the thread, holy fk mate, if you need any local help send me a message, best of luck mate
Cheers Mike, I did put it on FB but I don't think you're active on there? Hopefully see you at some point, I am out and about and back to work now but get very tired so don't tend to go far. On the upside I lost 14kg from the surgery/recovery k mate, if you need any local help send me a message, best of luck mate
I commented a week ago that I didn't think my Dad would last a week. I was wrong. He's still here.
He was allowed to go home on Thu evening, and I flew to England on Fri morning to see him.
Whilst he's not in pain, the brain tumours have severely affected his memory, in that he can't remember names, but he knows faces and can speak some. He can't really put together full sentences and gets quite frustrated that he can't finish a sentence he started.
My stepmom, whom I've never got along with, actually spoke to me at the weekend, and she's doing really well looking after Dad. My eldest brother's there for a week from the U.S and visits him everyday. It's a matter of time now, and I hope he departs without any pain.
He was allowed to go home on Thu evening, and I flew to England on Fri morning to see him.
Whilst he's not in pain, the brain tumours have severely affected his memory, in that he can't remember names, but he knows faces and can speak some. He can't really put together full sentences and gets quite frustrated that he can't finish a sentence he started.
My stepmom, whom I've never got along with, actually spoke to me at the weekend, and she's doing really well looking after Dad. My eldest brother's there for a week from the U.S and visits him everyday. It's a matter of time now, and I hope he departs without any pain.
Looks like I may be joining this club. Went for an eye test on Sunday because my right eye hasn't felt right for a week or so. Scanned & told I had a detached retina. Referred to local hospital & examined on Sunday evening & diagnosis confirmed, or so I thought.
Went to the specialist on Monday morning expecting to have an op to fix it to be told in fact I have tumour behind my eye which is pushing the retina forward.
No idea where this goes . Hopefully will find out in the next week or so .
Scared.
Went to the specialist on Monday morning expecting to have an op to fix it to be told in fact I have tumour behind my eye which is pushing the retina forward.
No idea where this goes . Hopefully will find out in the next week or so .
Scared.
Wombat3 said:
Looks like I may be joining this club. Went for an eye test on Sunday because my right eye hasn't felt right for a week or so. Scanned & told I had a detached retina. Referred to local hospital & examined on Sunday evening & diagnosis confirmed, or so I thought.
Went to the specialist on Monday morning expecting to have an op to fix it to be told in fact I have tumour behind my eye which is pushing the retina forward.
No idea where this goes . Hopefully will find out in the next week or so .
Scared.
Sorry to hear that Wombat, as you can read above I am going through it aswell and it is a really scary, tough time indeed. Not much advice I can give you other than try and stay off the internet - I scared myself fartless googling my condition and getting all sorts of american and middle eastern websites that were less than useless. The two places I go to for information are the Macmillan Forums and Cancer Research UK. I would register at one of those and you will quickly find all sorts of advice, help and support from others going through exactly what you are. Went to the specialist on Monday morning expecting to have an op to fix it to be told in fact I have tumour behind my eye which is pushing the retina forward.
No idea where this goes . Hopefully will find out in the next week or so .
Scared.
Siko said:
Wombat3 said:
Looks like I may be joining this club. Went for an eye test on Sunday because my right eye hasn't felt right for a week or so. Scanned & told I had a detached retina. Referred to local hospital & examined on Sunday evening & diagnosis confirmed, or so I thought.
Went to the specialist on Monday morning expecting to have an op to fix it to be told in fact I have tumour behind my eye which is pushing the retina forward.
No idea where this goes . Hopefully will find out in the next week or so .
Scared.
Sorry to hear that Wombat, as you can read above I am going through it aswell and it is a really scary, tough time indeed. Not much advice I can give you other than try and stay off the internet - I scared myself fartless googling my condition and getting all sorts of american and middle eastern websites that were less than useless. The two places I go to for information are the Macmillan Forums and Cancer Research UK. I would register at one of those and you will quickly find all sorts of advice, help and support from others going through exactly what you are. Went to the specialist on Monday morning expecting to have an op to fix it to be told in fact I have tumour behind my eye which is pushing the retina forward.
No idea where this goes . Hopefully will find out in the next week or so .
Scared.
I'm not that ill with it & fingers x'd it goes -ve by the end if the week because on Saturday I'm supposed to be walking my daughter down the aisle....
Just found out today my dad has it in his lung, and possibly in his brain. He's old, 82, and was v ill with Covid 18 months ago. Waiting for test results and information on likelihood of operations. Don't know what else to say but not expecting there to be any good news. Mum putting on a brave face but I know she's upset because she's cancelled all holidays. Don't want to tell the kids or friends etc at the moment, but feel like I need to get it out, tell someone, even if it is an anonymous forum. I feel hollow, not able to help, and useless.
Flibble said:
My mum has just been diagnosed. Went in with back pain, they assumed slipped disc or the like. Bowel cancer, spread to liver and spine. No idea on prognosis yet but I'm gutted tbh. Starting radiotherapy tomorrow which is quick sharp so that's something I guess.
Sorry to hear this Fibble Sorry mate. Best place to get advice (don't google it) is to join the MacMillan forums or Cancer research UK. The support is fantastic and whilst this is awful news, your mum is being seen very quickly.
I am going through this now and shortly starting chemo/radiotherapy myself - the service by the NHS has been excellent and surprisingly slick, the people are amazing and the equipment all shiny and new. I chose to go through the NHS rather than private with my medical cover and have been really impressed tbh. I don't know how serious your mum's diagnosis is (the oncologists are the best people to speak to) but clearly they are moving heaven and earth to get her treated quickly. Thinking of you and your family and wishing you the best.
I am going through this now and shortly starting chemo/radiotherapy myself - the service by the NHS has been excellent and surprisingly slick, the people are amazing and the equipment all shiny and new. I chose to go through the NHS rather than private with my medical cover and have been really impressed tbh. I don't know how serious your mum's diagnosis is (the oncologists are the best people to speak to) but clearly they are moving heaven and earth to get her treated quickly. Thinking of you and your family and wishing you the best.
It’s now around 4 weeks since my mam passed with cancer, 5 weeks since I lost my dog who was my best mate and today I attended the funeral of a friend and colleague who took his own life. I feel strangely numb to all of it. I am just in a apathetic daze with nothing really giving me joy. I know and accept that I am doing the wife’s head in and if I continue I will ruin our relationship for good.
I think I might be broken but don’t know who I can talk to about it. I have arranged some counselling through work but that doesn’t start until the back end of the month.
Life is just st at the minute, I feel I just want to be on my own for a few days without having to speak to anyone but having a 2 year old daughter and a wife who works most full time makes this impossible.
I think I might be broken but don’t know who I can talk to about it. I have arranged some counselling through work but that doesn’t start until the back end of the month.
Life is just s
t at the minute, I feel I just want to be on my own for a few days without having to speak to anyone but having a 2 year old daughter and a wife who works most full time makes this impossible. ED209 - hang in there buddy. I'm really sorry to hear about all you have had to go through, not the easiest at all. I know you said you're speaking to someone at the end of the month, but maybe your work or private medical (if you have) have a health call line. At the worst, there are some charities you can just call to have an ear to listen to - the good samaritans I see at train stations (but no direct experience)?
I came on here today trying to go through the thread and had to stop halfway ... whilst it's really sad, I am amazed at the level of support from what are (to any outsider) total strangers yet feel a strange connection due to shared interests, etc.
I'm a massive lurker on the thread, prefering to read and learn rather than participate but felt like writing tonight. I apologise in advance for the ramble but like many others before me, I'm stuck on where to turn to and what exactly to write.
It started with my maternal grandfather - who died of cancer over 15 years ago last month. I was a lot younger and shielded from it but saw the steady decline, the agonizing pain, the last few days and it tore me and my mum. Next was my maternal grandmother, who had throat cancer a couple of years ago - suffered, lost her happy attitude but got through it only for CV19 to take her away - what a wasted fight!
Most recently I watched my grandfather's youngest brother (who is like another gf/father figure) go through stomach and liver cancer. It took 2.5 years but got him in the end earlier this year ... same story and experience of watching him waste away as my grandfather and I was in the room for his final breaths ... I see it every night in my dreams
Now ... my father in law has been diagnosed with the dreaded C. It started as prostate (which would have been treatable) but because it went unnoticed, it quickly spread to his bones and it was only because he stopped eating and felt his legs hurt and took xrays that we caught it. Got the call that it was not curable, and chemo is only available to halt progress but (without so many words spoken) they think max 5 years - I think its 1-2 years. The kicker is we just had a newborn son end June. He found out a week before but didn't tell wife and I as they didn't want to ruin what should have been a happy time. Told me a few days later as wife was really struggling post-birth with the new one ( a whole different traumatic experience) and we finally told her a week later and it completely broke her. Our newborn has had some difficulties so we've been 100% focussed on him (have had to) with no time to even think or process the FIL's state.
My wife is being super strong and I think has for now pushed this to the back of her mind but at some point we/her are going to have to deal with it. I don't even know where to start reading/thinking/helping this but just wanted to get it all down ...
I need to be strong for her as she's had a tough start in life with her family, they still rely on her for a lot and she feels helpless like everything has gone wrong ... when she should be enjoying and spending time with our son ...
I guess I just don't know what to do or even where to start but finally putting this all down somewhere has helped...
I really efffing hate cancer ... its an effing effer frankly...
I came on here today trying to go through the thread and had to stop halfway ... whilst it's really sad, I am amazed at the level of support from what are (to any outsider) total strangers yet feel a strange connection due to shared interests, etc.
I'm a massive lurker on the thread, prefering to read and learn rather than participate but felt like writing tonight. I apologise in advance for the ramble but like many others before me, I'm stuck on where to turn to and what exactly to write.
It started with my maternal grandfather - who died of cancer over 15 years ago last month. I was a lot younger and shielded from it but saw the steady decline, the agonizing pain, the last few days and it tore me and my mum. Next was my maternal grandmother, who had throat cancer a couple of years ago - suffered, lost her happy attitude but got through it only for CV19 to take her away - what a wasted fight!
Most recently I watched my grandfather's youngest brother (who is like another gf/father figure) go through stomach and liver cancer. It took 2.5 years but got him in the end earlier this year ... same story and experience of watching him waste away as my grandfather and I was in the room for his final breaths ... I see it every night in my dreams
Now ... my father in law has been diagnosed with the dreaded C. It started as prostate (which would have been treatable) but because it went unnoticed, it quickly spread to his bones and it was only because he stopped eating and felt his legs hurt and took xrays that we caught it. Got the call that it was not curable, and chemo is only available to halt progress but (without so many words spoken) they think max 5 years - I think its 1-2 years. The kicker is we just had a newborn son end June. He found out a week before but didn't tell wife and I as they didn't want to ruin what should have been a happy time. Told me a few days later as wife was really struggling post-birth with the new one ( a whole different traumatic experience) and we finally told her a week later and it completely broke her. Our newborn has had some difficulties so we've been 100% focussed on him (have had to) with no time to even think or process the FIL's state.
My wife is being super strong and I think has for now pushed this to the back of her mind but at some point we/her are going to have to deal with it. I don't even know where to start reading/thinking/helping this but just wanted to get it all down ...
I need to be strong for her as she's had a tough start in life with her family, they still rely on her for a lot and she feels helpless like everything has gone wrong ... when she should be enjoying and spending time with our son ...
I guess I just don't know what to do or even where to start but finally putting this all down somewhere has helped...
I really efffing hate cancer ... its an effing effer frankly...
Aunt went into docs as she wasn't feeling right.
They found stage 2 cancer and decided to do a biopsy so they could tailor her treatment, biopsy came back that it wasn't stage 2, its actually stage 4 and its metastasis to several other locations, the best they can do is prolong life and suggest that she has a maximum of 5 years left.
She is in her 60s and only just retired...
Cancer can go and do one.
They found stage 2 cancer and decided to do a biopsy so they could tailor her treatment, biopsy came back that it wasn't stage 2, its actually stage 4 and its metastasis to several other locations, the best they can do is prolong life and suggest that she has a maximum of 5 years left.
She is in her 60s and only just retired...
Cancer can go and do one.
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