Effing cancer is an effing effer, frankly

[Mikey G]

marked1 said:

Yes its Diffuse large B cell lymphoma or DLBCL. I did a lot of my chemo on a stem cell ward. The restrictions are quite strict as you will have no immunity during the treatment. You will be isolated to a single room by yourself. My understand is that they will nuke your body with Chemo to kill of most blood cells? they will then use your own cells or that of a donor to replenish. I think the normal stay in hospital for Stem cells treatment is 1 to 3 months. Most patients just watch netflix all day from what i saw. Is Stem cell treatment a definite or will they review how you respond after salvage chemo?

From what I understand its salvage chemo then another PET scan and go from there. I'll find out next week, hopefully they'll have the results of my 2nd biopsy by then. They have cut a large part of the lymph node out so hopefully there is less to get rid of now

[marked1]

Mikey G said:

From what I understand its salvage chemo then another PET scan and go from there. I'll find out next week, hopefully they'll have the results of my 2nd biopsy by then. They have cut a large part of the lymph node out so hopefully there is less to get rid of now

Well good luck to what ever happens buddy, for both of us and everyone else. If you do go down the stem cell route, it does look like it gives a very good response. I know CAR-T is also an option.

Just to add, Hospital stays are not awful, once you have a few days out the way you do get used to the regime. Its also reassuring to know everything is there if things do go slightly wrong.

Edited by marked1 on Wednesday 22 February 18:21

[robwilk]

robwilk said:

skeggysteve said:

Sorry but I'm going to do this the easy/lazy way!

@robwilk - sorry to hear about your diagnosis and hope all goes as well as can be expected.
Question for you if you don't mind. I know we are all different but I'm so short of energy, I can sleep at the drop of a hat and can't stand/walk around for more than a few minutes without needing to sit down. It's taking all the energy I have to type this. Is that how you felt?

Sorry if I've missed anyone. Camera thingy tomorrow at 1.30 then 2nd March for the results. Need to sleep now.

To be honest no I never felt any different , they gave me a lung function test which consisted of walking around two chairs 20metres apart for 10 minutes while they monitored o2 in blood and pulse etc, then they did capacity etc, volume and recovery rate etc but I never heard the results etc.
After the first week after Chemo I was hit and had to go to bed for the afternoon but It passed after a couple of days. next round of chemo is next week so will see if that's the same.
Good luck with the biopsy dont worry about it they will make sure your comfortable, they gave me fentanyl.
All the best Rob

[GT3Manthey]

Polly Grigora said:

Mrs Polly Grigora did post here to thank you both for your kind thoughts, there was a possibility that she would gain a little more strength from communicating with strangers that cared

I deleted Mrs PG's posts due to there not being any response to hers within a few hours, I was only protecting Mrs PG from what may have upset her due to nobody replying quickly and did explain that perhaps another forum would be better for her as this part of the forum Isn't very busy

Anyway, my much loved lady died three weeks ago and now I cry like a child

Something that mattered much to my wife was that you both cared for her a stranger

So sorry to hear this Polly I truly am .

My heart goes out to you

[22]

Oh PG, I'm so sorry.

I remember reading Mrs PG's posts, apologies if they warranted a response. Many of us will have read her thoughts. Sometimes nothing needs to be said, other times it's hard to know what to say or words aren't enough, and other times someone else on here says it better than I ever could. I doff my cap to the posters who always find the words.

This thread can be tough and it can be powerful. I wish it didn't need to exist, I'm glad it does.

RIP Mrs PG.

[CharlesdeGaulle]

Polly Grigora said:

Anyway, my much loved lady died three weeks ago and now I cry like a child

We all know that posts like this are inevitable in a thread like this, but nothing reduces the pain when it happens. I'm sorry to hear of your awful loss, and my condolences.

Crying is good, and if you want to post here it may be cathartic. Sometimes just writing down how you feel and sharing it with strangers can help. It doesn't have to be rational or coherent, but get it out there if it feels right. Whilst we all know it's easier said than done, try and focus on the happy times rather than the end which will be so fresh in your mind. Bon courage.

[loafer123]

22 said:

Oh PG, I'm so sorry.

I remember reading Mrs PG's posts, apologies if they warranted a response. Many of us will have read her thoughts. Sometimes nothing needs to be said, other times it's hard to know what to say or words aren't enough, and other times someone else on here says it better than I ever could. I doff my cap to the posters who always find the words.

This thread can be tough and it can be powerful. I wish it didn't need to exist, I'm glad it does.

RIP Mrs PG.

Well said, 22, and my sincerely condolences, PG.

Actively remember the happy times, and the bad ones will eventually fade.

[EVOTECH3BELL]

After being ill since November, on Monday (my birthday) we got told my father has what they are classing as stage 4 pancreatic cancer. He's 63.
Secondary nodules pressing on the stomach and kidneys, multiple trips and A&E and months for an official diagnosis.
Feel like I've been grieving for him when he is still here.

Treatment doesn't look like it will have any positive outcome, discussions and decisions still to be made.

[GT3Manthey]

EVOTECH3BELL said:

After being ill since November, on Monday (my birthday) we got told my father has what they are classing as stage 4 pancreatic cancer. He's 63.
Secondary nodules pressing on the stomach and kidneys, multiple trips and A&E and months for an official diagnosis.
Feel like I've been grieving for him when he is still here.

Treatment doesn't look like it will have any positive outcome, discussions and decisions still to be made.

Jeez sorry to hear this mate .

Easy to say but try and be strong even if it’s just for him.

[EVOTECH3BELL]

GT3Manthey said:

EVOTECH3BELL said:

After being ill since November, on Monday (my birthday) we got told my father has what they are classing as stage 4 pancreatic cancer. He's 63.
Secondary nodules pressing on the stomach and kidneys, multiple trips and A&E and months for an official diagnosis.
Feel like I've been grieving for him when he is still here.

Treatment doesn't look like it will have any positive outcome, discussions and decisions still to be made.

Jeez sorry to hear this mate .

Easy to say but try and be strong even if it’s just for him.

Yeah he is fortunate to have a small but strong family circle and friends have been checking on him from all over. Difficult for him but comforting non the less.

Main struggle is the knowing wel not be able to do the things we had planned. Goodwood in the summer, tours on the motorbikes into Europe and the like.

Cancer is an effing effer indeed.
Definitely a reminder to make the most of the time you have.

I'm taking some time off work to look after my own health and have a GP appointment next week to dicuss support options for everyone involved.

[Hodgie]

billflin said:

FactoryBacked said:

billflin said:

Sorry to hear of all the PHers facing this horrid thing.

I am still struggling to process my diagnosis/treatment (stage 1 testicular cancer diagnosed last April, followed by surgery and one round of chemotherapy; all clear since). My rational head knows that I have been very fortunate and the prognosis is overwhelmingly good, but my oncologist recognised at my last check that I was still overly stressed/anxious and noted that that was not unusual at this stage (which in itself was helpful).

Has anyone been offered or taken up any form of counselling/therapy after or during their treatment? If so I would be very interested to know what the options were and whether it was effective.

I totally get this and have been considering the same thing over the last few weeks

I am now two years on from being in the thick of 3 months of surgery and chemo for testicular cancer. Now on 3 monthly monitoring but the anxiety seems to be getting worse as each follow up approaches. Every ache and pain is amplified and my imagination runs away to a dark place.

Probably a combination of a relatively unfulfilling job leading me to questioning my purpose and 'legacy', itchy feet to see more of the world, having a loving partner, and an awesome two year old toddler who was the product of 5 years of IVF that I'd be really pissed off at missing out on seeing him grow up.

Your post has encouraged me to ask the question during my call next week. Thank you.

As usual, all power to those living with this thing and a big thumbs up to those who have beaten it.

Thank you for replying, your posts when I was diagnosed were incredibly helpful at getting me through the treatment. I am sorry to hear that (like me) despite being all clear you can't shake the anxiety. I think about this bloody thing every single day.

My oncologist explained to me that a testicular cancer diagnosis hits people particularly hard, because it is random, has few symptoms and generally occurs in younger men (who consider themselves to be invincible). As such it is often a complete shock (as it was for me), hence being more troublesome to overcome mentally. It also all happens very fast - I went from first diagnosis to surgery in less than a week. Finally, the area of the body which is affected is a material factor to the mental impact. I'm not sure how true all of that is (I expect that all cancer diagnoses are a shock), but some of it rings true with me.

My overarching feeling - and what I want to "fix" - is that I still do not feel myself, I feel I have been knocked way off course. I look at photos from only a year ago and immediately think that that was me "before cancer". I struggle to look forward to anything and I am not good company at home, being pessimistic and irritable. That is not "me". That is compounded by considerable pressure at work (I bitterly regret not having critical illness cover, as that would have allowed me some financial breathing space). I also do not feel that I really have anyone to talk to, because no-one I know has gone through this. My wife has taken the overwhelming burden of my diagnosis by holding everything together and I cannot burden her more. Hence me looking for a third party (although I appreciate - as noted by another poster - that it may not work for everyone).

I also struggle to see myself in the long term future, because I have this feeling that I will not have one.

Whilst I am OK (at the moment) in the run-up to the check-ups, I have a tremendous fear that those close to me will become ill. Again, there is no rational basis for this, but perhaps because I feel that I have been hit at random I now fear the same will happen to others.

Hi Both,

I was having counselling before my diagnosis (as billflin stage one, surgery, adjuvant chemo and all clear to date).

I had meningitis in my early 20's and have struggled with anxiety and OCD ever since. Its a different scenario but to be honest the counselling was a life saver for me. I have continued with it and I believe it has helped a lot with the anxiety around the diagnosis. That said, I still have a lot of anxiety before the check ups, I don't think it would be natural not to.

The thing that is really affecting me is, like yourselves, every ache and pain I immediately fear is it being cancer. For example, at present I have a pain in my hip/groin on the opposite side to the surgery that I'm worrying about. I had an MRI in late December which was clear so logic says its unrelated, plus I've been going to the gym every weekday so its probably related to that. When I was first diagnosed I had really bad lower back ache and was convinced I was going to be told it was at an advanced stage however the CT Scan showed it had not spread.

I do have to remind myself fairly often that the odds are on my side but if it does come back the treatment wont be nice but I'll get through it.

My advice would be to try the counselling, I did find it took a while to have an effect but one day I realsied that there had been more good than bad days.

My thoughts are with everyone that have posted facing this and that have lost loved ones

[Hodgie]

Siko said:

Bit of good news - 9 months to the day after being told I had cancer, following surgery and 6 weeks radio/chemotherapy and 4 months recovery, I have been told it has gone. Very chuffed as you can imagine.

To add to the previous poster I will probably have counselling as I feel it has affected me deeply, I get free counselling through my medical insurance and also my employer so will choose one of them but also heard good things about the MacMillan counselling.

Thoughts with anyone fighting this horrible disease.

Great news Siko, really pleased for you!

[Siko]

Just catching up with the thread I visited my best mate and his wife yesterday, she had recently been given 2 yrs to live from her breast cancer. To see an otherwise extremely healthy runner and loving mum in her mid-40s reduced to someone who couldn’t even get off the sofa and barely spoke, is heart breaking. She’s a fighter but is having an incredibly tough time - can’t even move her arm and is in constant pain from the tumours in her lymph nodes pressing on the nerves. It looks like the docs are trying to deal with that through radiotherapy whilst the main cancer elsewhere is dealt with through chemo tablets as they now can’t give her the drip for some reason. Her main joy was going for a daily walk around the lake near their house and she can’t even do that.

We sat down and talked for hours, having been given the all clear myself last week and with her own condition steadily worsening she was nothing but happy for me. I don’t know how I’d have felt if the roles were reversed. I have no idea how she managed to be so positive about everything around here in the midst of so much pain and the constant cycle of bad news. Thoughts with everyone dealing with this horrible disease, truly, fck cancer.

[Wombat3]

Hodgie said:

Siko said:

Bit of good news - 9 months to the day after being told I had cancer, following surgery and 6 weeks radio/chemotherapy and 4 months recovery, I have been told it has gone. Very chuffed as you can imagine.

To add to the previous poster I will probably have counselling as I feel it has affected me deeply, I get free counselling through my medical insurance and also my employer so will choose one of them but also heard good things about the MacMillan counselling.

Thoughts with anyone fighting this horrible disease.

Great news Siko, really pleased for you!

Great news indeed.

I was told yesterday that the Melanoma in the back of my eye is a bit smaller than it was 4 months on from Proton Beam radiotherapy. Hopefully that means they zapped it all but these things take a long time to die & the question / issue now is what happens as it does. It might go quietly, it might not.

They've spotted something on my Liver via MRI but they say it's not cancerous because it didn't light up with the dye injected during the scan (had that done twice). Nonetheless it's getting biopsied next week which will be fun.

Due another injection in my eye mid March (have to have them every 3 months) to try & mitigate the possibility of neo vascular glaucoma (which would be game over for my eye). Those are not nice either, but overall, when I read some of the stories here I think I got off very lightly with this.

I've never really had any pain from it and it doesn't get endless rounds of debilitating treatment either. In fact there is no further treatment possible as far as the main tumour is concerned but, as above it looks like they may have been able to nuke it.

Of course people die from it ( if it spreads , usually goes to the Liver) but it's a minority as far as I can tell. That part is a bit of a cloud in my head but otherwise its business as usual more or less, Maybe I'm just deep in denial, not quite sure really. It's going to be hanging around for a long while yet as it shrinks, so just have to hope the biopsy and then the regular checks & MRIs stay clear.

This is very rare, and basically just very unlucky but it would be better to have found it earlier. It was found in August 22 after a regular eye test and OCT scan. My previous test was in 2019 so my advice to anyone is get your eyes checked regularly and pay the extra 10 quid or whatever it costs for the OCT scan.

My best wishes to everyone dealing with some form of this either themselves or with loved ones. As above I don't really have much to deal with physically so I am very aware of the mental challenge. In my case its just a bit of a dark cloud but I think it's not to be underestimated.

Someone was asking where they could get support.....aside from the Cancer Centre I'm under I can see its available from Macmillan and also there is an organisation setup that's specific to what I have. There's probably others around for other variants if you go looking. The value of reading and sharing in places like this is not to be underestimated either. Thanks to all that do.

[Adrian E]

Worth noting that tumours need to be metabolically active to show up on a PET scan. My lung one wasn’t for the first 2 years after original diagnosis, as it was so small. Once it got to 1cm it showed up (PET #3). Was very slow growing and the chemo I had for the spread to my liver meant it kept getting shrunk anyway. It’d always been there since original cancer diagnosis in 2020 but just wasn’t doing much. The lung was my last op and was only 7mm when removed and I was out next day

Ref liver - IF it turns out to be metastasis from somewhere else it is much more survivable these days. In the ‘good old days’ 5-10 years ago spread to the liver was indeed game over, and many websites providing advice are seriously out of date (one I read said something horrific like ‘palliative care only’ at which point I stopped reading! I’ve had 3 liver resections down at Royal Surrey (Guildford) and the team there are amazing. Mine was spread from the bowel and the little buggers were close to the blood supply which made them difficult to access. The liver is an amazing organ.

Hopefully yours is absolutely fine, but putting this out there for you/anyone else that might think they’re screwed based on what they find online and being told there is spread there.

[Wombat3]

Adrian E said:

Worth noting that tumours need to be metabolically active to show up on a PET scan. My lung one wasn’t for the first 2 years after original diagnosis, as it was so small. Once it got to 1cm it showed up (PET #3). Was very slow growing and the chemo I had for the spread to my liver meant it kept getting shrunk anyway. It’d always been there since original cancer diagnosis in 2020 but just wasn’t doing much. The lung was my last op and was only 7mm when removed and I was out next day

Ref liver - IF it turns out to be metastasis from somewhere else it is much more survivable these days. In the ‘good old days’ 5-10 years ago spread to the liver was indeed game over, and many websites providing advice are seriously out of date (one I read said something horrific like ‘palliative care only’ at which point I stopped reading! I’ve had 3 liver resections down at Royal Surrey (Guildford) and the team there are amazing. Mine was spread from the bowel and the little buggers were close to the blood supply which made them difficult to access. The liver is an amazing organ.

Hopefully yours is absolutely fine, but putting this out there for you/anyone else that might think they’re screwed based on what they find online and being told there is spread there.

Thanks for that, great information. I'm also under the RS at Guildford.

[Siko]

Thanks Adrian - very useful info indeed. So much internet info ref cancer is just wrong, I’ve lost count of how many ‘experts’ I met gave me totally wrong information based on crap they read in the net, none of whom had cancer themselves.

In fact, those insta-experts are my new favourite pet hate topping fat people who park big SUVs in disabled bays

[Adrian E]

Wombat3 said:

Thanks for that, great information. I'm also under the RS at Guildford.

Spooky! Prof Karanjia and his team are awesome. He’s, I think, coming up to retirement but has some seriously good staff training under him. I’ve had roughly 1/4, then a 1/10th, then last time was just over 1/2 my liver removed. It regrows and keeps working. My liver function tests can look a bit screwy but it does the job and I’m still here each time there’s been a smaller number of tumours to deal with, but the location of the 1st and 3rd set was ‘problematic’ if the chemo wasn’t effective. Thankfully it was. The last time was 2 tumours - one on the periphery but the other required removal of the whole left lobe of the liver to get to it. That felt VERY odd over the few months following the June op while it was regrowing! Bun fight with my other organs to make space meant eating/digesting was a bit of a challenge, but all good now

Just the 2 feet of scars to show for it all (and the biggest has been opened 3 times now!)

Am looking forward to a summer holiday where I can tell little kids I was attacked by a tiger/lion/shark when/if they ask, as they tend to do!

I had my original bowel op in Brighton and the lung was done at Guys.

It’s a relief to get past my 4 month scans for the first time in 3 years of treatment, and know I’ve got at least 4 more months without thinking about chemo or picc lines. Fingers and toes crossed it’s a long term fix…..

[Nemophilist]

Polly Grigora said:

My love, I am broken and nobody but I can fix me, you were so strong, the cancer kept attacking you and you kept fighting, im posting here because i have nobody to talk to
i cant be upsetting your sisters or our daughter about how i feel now
you asked me to cuddle you and you held me tight to you before you couldnt communicate with me anymore
love you wanted to die at home

I’m so sorry for your loss.
Have you got support in place for you?
The coming weeks/months will be tough and grief affects people in ways that you might not expect.
Some help to navigate these times will be invaluable.

[Nemophilist]

Polly Grigora said:

I appreciate your concern, no I have no support but will work my way through this, it sometimes helps in being able to communicate with strangers and thats what im doing here, i need to find more strength now, earlier today I fried a little food for myself, cooking for one instead of the both of us delayed the job, had been cooking for the both of us for many months
have a niece far away from me that suggested the same as thee, seeking help isnt possible, strength i need to be stronger

How old are you daughters?
Keep talking, to strangers, to your daughters, to your niece.
Reminisce with them. It helps even if it might feel sore at the time.

There is a model of grief by someone called Lois Tonkin which shoes that how you expect grief to get smaller in time isn’t really the case, and that the grief stays the same but that you and other happy thoughts grow around it.