Torch's Counselling Thread (5 Viewers)

[torchomatic]

Well, where to start. Last felt ok at the end of August. In early September started feeling sick, tired and could barely walk any distance without feeling like I'd run a marathon. Went to docs who said I had bronchitis and just had to get on with it.

Fast forward a month or so until the last Wednesday in October when I was called to the cancer unit at Warwick hospital who confirmed I had leukaemia. They presumed I had a common form called CML. Had a bone marrow fluid and bone marrow biopsy (which bloody hurt) and samples were sent off. A week later these came back as inconclusive. A week further down the line and it was confirmed I had a rare strain never seen by my consultant in her career, no known cases ever in Warwickshire/West Midlands and only six in the UK. Bugger. There aren't currently any drugs, etc. Apparently it's a genetic thing. Could have come out 30 years ago or in 30 years time, or maybe never.

Then the good news - there is a clinical trial in London that I may be able to go on, but at the moment it's all up in the air as they are not sure if I have lymphoma as well. If I do then I can't go on the trial. Bugger again. I will have to have chemo for the lymphoma and a bone marrow transplant for my leukaemia. That is the current position. I'm not being treated as such just taking chemo tablets to get my white cells down.

It's a weird time at the moment as I've been off work for around five weeks so I'm living in my own little bubble. I read some of the other thread about cancer and stuff and someone said they couldnt imagine what it would be like..well...it is weird. You do see things differently from the world around you, rain, trees, etc and also the people you encounter. I was in Sainsbury's earlier and there was this baby boomer complaining that something or other in his home delivery had a shorter date than he would like and he told the customer services girl "what are you going to do about it?" You begin to realise just how many things in every day likfe do not actually matter. All those times I worried about this or that...none of it matters.

I've called this my counselling thread because it has been quite good writing this all down to people I don't know. My immediate family know as we talk about it. My stepdad is rubbish at this kind of thing and is in bits. My wife is being strong, but I know how she really feels. My lad just thinks I'm off work as I'm a bit tired.

Finally, I am being really positive as what else can you do? I have to be strong for my family and I want to be strong for myself. I do have my moments but they are usually in the middle of the night when the cat has woken me up and I can't get to sleep.

I'm not being morbid as I expect to live for another 30 odd years yet, so keeping my fingers crossed that I can go on this drugs trial.

I can't go to night matches at the moment due to increased risk of infection, but intend to go on Saturday if it's not too cold. I would imagine when treatment starts (whatever that may be) then I will miss quite a bit of this season. No bad thing.

It's funny how quickly life can change. It's a cliche, I know, but I would say to you all, enjoy every moment as you really don't know what is in store for you.

Simon
(Torch)

 

---

[Corrado]

that is utter shit for you. best of luck - good to see your positive state of mind

 

[clint van damme]

Rotten luck mate. I'll keep you in my thoughts, hope it all works out.

 

[Nick]

Well, where to start. Last felt ok at the end of August. In early September started feeling sick, tired and could barely walk any distance without feeling like I'd run a marathon. Went to docs who said I had bronchitis and just had to get on with it.

Fast forward a month or so until the last Wednesday in October when I was called to the cancer unit at Warwick hospital who confirmed I had leukaemia. They presumed I had a common form called CML. Had a bone marrow fluid and bone marrow biopsy (which bloody hurt) and samples were sent off. A week later these came back as inconclusive. A week further down the line and it was confirmed I had a rare strain never seen by my consultant in her career, no known cases ever in Warwickshire/West Midlands and only six in the UK. Bugger. There aren't currently any drugs, etc. Apparently it's a genetic thing. Could have come out 30 years ago or in 30 years time, or maybe never.

Then the good news - there is a clinical trial in London that I may be able to go on, but at the moment it's all up in the air as they are not sure if I have lymphoma as well. If I do then I can't go on the trial. Bugger again. I will have to have chemo for the lymphoma and a bone marrow transplant for my leukaemia. That is the current position. I'm not being treated as such just taking chemo tablets to get my white cells down.

It's a weird time at the moment as I've been off work for around five weeks so I'm living in my own little bubble. I read some of the other thread about cancer and stuff and someone said they couldnt imagine what it would be like..well...it is weird. You do see things differently from the world around you, rain, trees, etc and also the people you encounter. I was in Sainsbury's earlier and there was this baby boomer complaining that something or other in his home delivery had a shorter date than he would like and he told the customer services girl "what are you going to do about it?" You begin to realise just how many things in every day likfe do not actually matter. All those times I worried about this or that...none of it matters.

I've called this my counselling thread because it has been quite good writing this all down to people I don't know. My immediate family know as we talk about it. My stepdad is rubbish at this kind of thing and is in bits. My wife is being strong, but I know how she really feels. My lad just thinks I'm off work as I'm a bit tired.

Finally, I am being really positive as what else can you do? I have to be strong for my family and I want to be strong for myself. I do have my moments but they are usually in the middle of the night when the cat has woken me up and I can't get to sleep.

I'm not being morbid as I expect to live for another 30 odd years yet, so keeping my fingers crossed that I can go on this drugs trial.

I can't go to night matches at the moment due to increased risk of infection, but intend to go on Saturday if it's not too cold. I would imagine when treatment starts (whatever that may be) then I will miss quite a bit of this season. No bad thing.

It's funny how quickly life can change. It's a cliche, I know, but I would say to you all, enjoy every moment as you really don't know what is in store for you.

Simon
(Torch)

Don't know how you can even post or look at football scores, I'd probably be sat in a room shivering and having a breakdown.

Stay strong No idea what to say

Looking at some of the threads on here recently, it's quite good to get things off your chest where nobody actually knows you! There have been some really deep threads.

 

[torchomatic]

Don't know how you can even post or look at football scores, I'd probably be sat in a room shivering and having a breakdown.

Stay strong No idea what to say

Looking at some of the threads on here recently, it's quite good to get things off your chest where nobody actually knows you! There have been some really deep threads.

You know, I bet you wouldn't as I thought I would be like that, but you start to think of your wife and your kid. I think it is a million times worse for my wife than me.

Yes, it's been quite cathartic to unburden myself here on SBT.

 

[Coventry87]

Hi mate
I was diagnosed with Lymphoma 3 years back. What you and your family are experiencing is completely normal. I can't offer any advice apart from trust the experts and the medical process, stay positive and enjoy not getting worried about life's trivia.
Keep us up to date and share your progress.
All the best #pusb

 

[Nick]

You know, I bet you wouldn't as I thought I would be like that, but you start to think of your wife and your kid. I think it is a million times worse for my wife than me.

Yes, it's been quite cathartic to unburden myself here on SBT.

I'd certainly be looking at life a lot differently!

I think it is the thought of them that would be the worry! Don't know how you manage it!

 

[torchomatic]

I'd certainly be looking at life a lot differently!

I think it is the thought of them that would be the worry! Don't know how you manage it!

To be honest I've never been much of a worrier and I'm glad of that now. Obviously, I have thought "why me?" and wish it hadn't have happened and that at this very minute I was at work doing mundane every day stuff, but it has happened and I can't change it. As I said in my OP, I have had my moments and had a cry every now and then, but....and it is difficult to describe I have found that I have just got on with it. The biggest issue is waiting round to see if I have lymphoma or not as that will throw a spanner in the works. There are a couple of treatment paths, but if I have that as well as the leukaemia then it will be a very difficult one.

 

[Otis]

Well, where to start. Last felt ok at the end of August. In early September started feeling sick, tired and could barely walk any distance without feeling like I'd run a marathon. Went to docs who said I had bronchitis and just had to get on with it.

Fast forward a month or so until the last Wednesday in October when I was called to the cancer unit at Warwick hospital who confirmed I had leukaemia. They presumed I had a common form called CML. Had a bone marrow fluid and bone marrow biopsy (which bloody hurt) and samples were sent off. A week later these came back as inconclusive. A week further down the line and it was confirmed I had a rare strain never seen by my consultant in her career, no known cases ever in Warwickshire/West Midlands and only six in the UK. Bugger. There aren't currently any drugs, etc. Apparently it's a genetic thing. Could have come out 30 years ago or in 30 years time, or maybe never.

Then the good news - there is a clinical trial in London that I may be able to go on, but at the moment it's all up in the air as they are not sure if I have lymphoma as well. If I do then I can't go on the trial. Bugger again. I will have to have chemo for the lymphoma and a bone marrow transplant for my leukaemia. That is the current position. I'm not being treated as such just taking chemo tablets to get my white cells down.

It's a weird time at the moment as I've been off work for around five weeks so I'm living in my own little bubble. I read some of the other thread about cancer and stuff and someone said they couldnt imagine what it would be like..well...it is weird. You do see things differently from the world around you, rain, trees, etc and also the people you encounter. I was in Sainsbury's earlier and there was this baby boomer complaining that something or other in his home delivery had a shorter date than he would like and he told the customer services girl "what are you going to do about it?" You begin to realise just how many things in every day likfe do not actually matter. All those times I worried about this or that...none of it matters.

I've called this my counselling thread because it has been quite good writing this all down to people I don't know. My immediate family know as we talk about it. My stepdad is rubbish at this kind of thing and is in bits. My wife is being strong, but I know how she really feels. My lad just thinks I'm off work as I'm a bit tired.

Finally, I am being really positive as what else can you do? I have to be strong for my family and I want to be strong for myself. I do have my moments but they are usually in the middle of the night when the cat has woken me up and I can't get to sleep.

I'm not being morbid as I expect to live for another 30 odd years yet, so keeping my fingers crossed that I can go on this drugs trial.

I can't go to night matches at the moment due to increased risk of infection, but intend to go on Saturday if it's not too cold. I would imagine when treatment starts (whatever that may be) then I will miss quite a bit of this season. No bad thing.

It's funny how quickly life can change. It's a cliche, I know, but I would say to you all, enjoy every moment as you really don't know what is in store for you.

Simon
(Torch)

Thanks for sharing, Torch. Much appreciated and you are right, writing things down does help. Telling people stuff does help.

I'm sure it can work as a release valve and I believe that sharing can help lessen burden of weight on a person's mind.

How old is your lad? Think you have said before, but I have forgotten. Have you envisaged a time and place when you are going to tell him?

Each and every person is of course different and you know your son best of all. Just picking up the scenario on my next door neighbour. He died two years ago of cancer.

He decided not to tell his lad at all, at any point. The lad was 12 at the time. The dad died within a year and the son never, ever knew anything of the illness and sadly it destroyed him when his dad died.

He was such a calm, level-headed and quiet lad and suddenly after his dad died he went wild. His mum said he could never ever forgive his dad for not telling him and that he would have treated him differently and behaved more considerately if he had known.

Guess he remembered every time he was told off and was cheeky and didn't do as he was told. It is so true that people can treat each other entirely differently when they are ill of course.

There is also the positive side that perhaps your lad can be strong for you through knowing and you can develop a stronger bond through it all as a result.

With the right treatment you can beat this for sure and perhaps you come out the other side stronger and with a closer bond to your family.

Not trying to preach at all and like I say, you know you son better than anyone. I'm sure you've mulled it over in your mind whether to tell him or not and at what stage.

Nothing better in the world though if you can be rid of the disease quickly and with your son totally oblivious to it all. How fantastic would that be!!

Keep on chatting, keep on sharing and keep on fighting.

I am now willing the City to thump MK on Saturday on your behalf!

 

[Philosoraptor]

Good luck Simon, I had a major heart attack with complications just over six weeks ago. Recovery is being a bitch but getting stronger each week. I wish you the best.

 

[Otis]

Good luck Simon, I had a major heart attack with complications just over six weeks ago. Recovery is being a bitch but getting stronger each week. I wish you the best.

Hope you are back to full throttle real soon, Philosoraptor. Good luck with your recovery.

 

[skyblueinBaku]

I spent quite a bit of time this year driving my next door neighbour to hospital for her chemo sessions, Torch. She has been declared as free from cancer now, and said that a big help was staying positive. Don't let it get you down, mate. Keep swinging.

 

[Johnnythespider]

Bloody hell torch that is some OP. You seem to be taking a positive outlook to your illness, which I'm sure will stand you in good stead as your treatment progresses. I hope you soon have a clear path to good health, as I imagine the waiting for results of tests and what treatment is required is a real concern.
Stay strong and best wishes for your future health.

 

[Deleted member 5849]

Never quite know how to respond to threads like this as, tbh, anything I put down sounds a bit... vacuous. Best wishes doesn't really convey it, saying how it helps me because as you said, it makes you realise what actually matters sounds a bit... self-centred.

So hopefully 'all the best' doesn't sound overly simple. Your stepdad may be rubbish at that kind of thing, but he's there, that's the main thing.

 

[skybluedan]

I came on the thread as I thought torch had turned into a agony aunt, was just gonna tell him me problems
Well fuckin hell, so sorry for you bud, the main thing is torch mate is the positive people will recover more , I really do believe in positive vibes stay strong and upbeat mate

 

[rob9872]

Good look torchy. Top place and top people in the Aylesford Unit so you're in good hands. Fingers crossed for you, particularly with a young un.

 

[skybluetony176]

Terrible news Torch. Hope you make a quick and full recovery. All the best.

 

[Sky Blue Harry H]

Hi Torchy - sorry for your news, and I know everybody's case is personal to them. If it helps a little. 11 years ago last May, I found out I was going to become a dad for the first (and only time). At almost exactly the same time my one and only brother discovered he had leaukemia (the typr you can treat, but not cure - won't bore you, as I expect you've quickly become an expert). I travelled up to Newcastle where he was sending himself to sleep by knocking back pints of white wine (so he could try and get some sleep). Once he'd got his head around it, he faced up to it and he's still aok 11 years later (at work and just seen the first of his 2 sons married - next one is next year).

Enjoy life, despite the City, and keep a positive attitude. Good luck my fellow Sky Blue

 

[Gazolba]

Sorry to hear of your health problems. I have some myself, though not as serious as yours. I would say do as much research on your problems as you can. Knowledge is power. And never trust any doctor 100%, they are often wrong. It's a very specialized field and not every doctor knows everything or agrees with every other doctor. You will be the person who ultimately decides what treatment to undergo. Best of luck.

 

[chiefdave]

We're all behind you torch. Fight till the game is won.

 

[Covstu]

Shit news pal, I hope it all works out. I am glad you have taken a positive approach as many people can be defeated by illness before it really starts. I wouldn't let the fucker get to you and fight it all the way, there is nothing you can do about it but just that.

 

[wingy]

Forgive me torch for going into the technical /treatment aspect but I think you said in the other thread that it was genetic, so is gene therapy an option.
Are there any Lancet papers out there on that sphere of treatment?

 

[Otis]

Certainly worth looking at anything and everything, Wingy, and as many have said, positivity can take you a long way, as hard as that can be to drum up in such a horrible situation.

I'm sure we are all crossing our fingers and hoping no lymphoma is detected so Torch can get the trial he seeks.

Keep on fighting.

 

[ccfctommy]

Jeez sorry to hear about this Torchy! Lets hope you get on this drugs trial!

 

[duffer]

Torchy (Simon) mate, for once I am completely without words. Almost.

I guess you know that despite the fact that everyone here hates your guts because you secretly love SISU, we're also your mates, right.

As a mate, all I can say is this - if there's anything trivial you need taking care of, car sorting, tickets collecting, house fixing, lifts to anywhere, whatever, for Christ's sake ask. I'll help, or someone else here will. You just need to focus on the serious stuff which is taking it easy whilst simultaneously hammering the crap out of this thing (which you will).

You've got a lifetime of psychological resilience and inner fortitude to draw on - finally, you can see the benefit of supporting CCFC! Now you can put it to some proper use mate.

Stay strong, and know that there are people here to help.

 

[Ashdown]

Well Simple Simon ?!, I love my cat too and my wife and my kids and life in general I guess. I'm no expert but this type of health issue has become quite common these days [ Why ?, will we ever get any answers on that ? } and I know a fair few sufferers and long term survivors who have lived medication driven but relatively normal lives, it's a lot more positive these days.
I Wish you all the best, they say 1 in 2 of us will join you with some form of the illness at some time in our lives so you'll never walk alone as such.
Do your best, no pressure................... 'You are one of our own ' !!
PUSB

 

[Nick]

Torchy (Simon) mate, for once I am completely without words. Almost.

I guess you know that despite the fact that everyone here hates your guts because you secretly love SISU, we're also your mates, right.

As a mate, all I can say is this - if there's anything trivial you need taking care of, car sorting, tickets collecting, house fixing, lifts to anywhere, whatever, for Christ's sake ask. I'll help, or someone else here will. You just need to focus on the serious stuff which is taking it easy whilst simultaneously hammering the crap out of this thing (which you will).

You've got a lifetime of psychological resilience and inner fortitude to draw on - finally, you can see the benefit of supporting CCFC! Now you can put it to some proper use mate.

Stay strong, and know that there are people here to help.

Bang on!!

 

[oucho]

To lighten the mood a bit Si, most Cov fans were feeling good at the start of August, then started increasingly dodgy as the weeks and months passed since then!

 

[ajsccfc]

Fucking hell, cancer and leukaemia and all their pals are the shits. Kick their ass, sea bass

 

[Malaka]

Hi Torch
I'm really sad to hear your news and you are right, what usually winds us up is total bollocks in the scheme of things. Had cancer in my family recently and it is difficult for everyone, pussy footing around etc.
I remember your posts from the old CET forum, always succinct and rational. You still seem to be. What is essential is you try to stay positive and maintain your sense of humour. You have been dealt a shit hand, but you have to play it. I wish you all the best in your fight. Good luck mate!

 

[fernandopartridge]

Like I said elsewhere, sorry to hear this Torchy but then I don't want to sound ridiculously melancholy, there is enough of that on here already. Stay positive and sincere good luck wishes from me.

PS - Wasps lost heavily at the weekend

 

[rondog1973]

Seldom agree with you on this forum, but all the best. Hope you give its arse a resounding kicking.

 

[covcity4life]

sorry to hear this news torch, its really put things in perspective for me. here i am today angry all morning as a family member annoyed me on whatsapp and then i read your post,talk about stressing over things that do not matter!

stay strong torch, if you are religious pray,if not dont worry as i will for you!

you will get through this and you wont waste your life away now as you see the bigger picture. it will all work out. ever need to talk post in here or PM, it might be good to talk.

 

[AVWskyblue]

Well, where to start. Last felt ok at the end of August. In early September started feeling sick, tired and could barely walk any distance without feeling like I'd run a marathon. Went to docs who said I had bronchitis and just had to get on with it.

Fast forward a month or so until the last Wednesday in October when I was called to the cancer unit at Warwick hospital who confirmed I had leukaemia. They presumed I had a common form called CML. Had a bone marrow fluid and bone marrow biopsy (which bloody hurt) and samples were sent off. A week later these came back as inconclusive. A week further down the line and it was confirmed I had a rare strain never seen by my consultant in her career, no known cases ever in Warwickshire/West Midlands and only six in the UK. Bugger. There aren't currently any drugs, etc. Apparently it's a genetic thing. Could have come out 30 years ago or in 30 years time, or maybe never.

Then the good news - there is a clinical trial in London that I may be able to go on, but at the moment it's all up in the air as they are not sure if I have lymphoma as well. If I do then I can't go on the trial. Bugger again. I will have to have chemo for the lymphoma and a bone marrow transplant for my leukaemia. That is the current position. I'm not being treated as such just taking chemo tablets to get my white cells down.

It's a weird time at the moment as I've been off work for around five weeks so I'm living in my own little bubble. I read some of the other thread about cancer and stuff and someone said they couldnt imagine what it would be like..well...it is weird. You do see things differently from the world around you, rain, trees, etc and also the people you encounter. I was in Sainsbury's earlier and there was this baby boomer complaining that something or other in his home delivery had a shorter date than he would like and he told the customer services girl "what are you going to do about it?" You begin to realise just how many things in every day likfe do not actually matter. All those times I worried about this or that...none of it matters.

I've called this my counselling thread because it has been quite good writing this all down to people I don't know. My immediate family know as we talk about it. My stepdad is rubbish at this kind of thing and is in bits. My wife is being strong, but I know how she really feels. My lad just thinks I'm off work as I'm a bit tired.

Finally, I am being really positive as what else can you do? I have to be strong for my family and I want to be strong for myself. I do have my moments but they are usually in the middle of the night when the cat has woken me up and I can't get to sleep.

I'm not being morbid as I expect to live for another 30 odd years yet, so keeping my fingers crossed that I can go on this drugs trial.

I can't go to night matches at the moment due to increased risk of infection, but intend to go on Saturday if it's not too cold. I would imagine when treatment starts (whatever that may be) then I will miss quite a bit of this season. No bad thing.

It's funny how quickly life can change. It's a cliche, I know, but I would say to you all, enjoy every moment as you really don't know what is in store for you.

Simon
(Torch)

I haven't been on here more than 18 months Torch, though we have replied to each other's posts on my old account (sbadey). Anyway I just wanted to say I'll be praying for you during this testing time you are experiencing and just to say I greatly admire the strength with which you are dealing with it all. Get well soon my sky blue friend

Sent from my 5010X using Tapatalk

 

[Sick Boy]

I have only just seen this and can't imagine what you're going through. My thoughts are with you, your friends and family. Keep your head up and you'll get through it pal. At least you have us lot on here to help you feel better about yourself.