Effing cancer is an effing effer, frankly

[Scrump]

Thanks.

[surveyor]

Prolex-UK said:

loafer123 said:

Scrump said:

I haven’t posted about my father and his cancer for a while.
He was diagnosed with liver cancer early 2023. The medical staff gave him a few months to live and suggested we bring his 80th birthday celebrations forward from September.
He made it to September for his birthday.

Before that we went to Thruxton for the weekend in June to watch the historic racing, he loved it as he used to race single seaters.There was an awful unspoken atmosphere hanging over the weekend as we all fully expected it to be his last weekend away.

One year on and we have just returned from another weekend watching historic racing at Thruxton.
He was given a handful of months to live and is still hanging in there almost 18months later.

Good to hear…keep making those memories.

Plus one

Happy for you all

And another

[surveyor]

Scrump said:

surveyor said:

Eve of my wife's operation. In and out the same day, but we are both pretty nervous,

Good luck to both of you. It will be fine.

First step done. No pain so far but I suspect she’s flying high still. They certainly sent enough pain killers home with her.

Step-son appears to be dealing with it badly and bottling it up. Not ideal.

[Scrump]

surveyor said:

First step done. No pain so far but I suspect she’s flying high still. They certainly sent enough pain killers home with her.

Step-son appears to be dealing with it badly and bottling it up. Not ideal.

Good news that it went well and you are both home.
I hope step-son finds a way to cope with it, does he have any siblings who could help?

[surveyor]

Scrump said:

surveyor said:

First step done. No pain so far but I suspect she’s flying high still. They certainly sent enough pain killers home with her.

Step-son appears to be dealing with it badly and bottling it up. Not ideal.

Good news that it went well and you are both home.
I hope step-son finds a way to cope with it, does he have any siblings who could help?

Today has been a mare.

The wife continues to feel no pain.

The sibling (our 18 year old daughter) had already booked to go to Ibiza, but obviously was a bit upset. I woke up to a message saying please wake up as she was frightened.

I'm not sure, but think this was mostly due to lack of sleep, too much booze and maybe being spiked. She's on a plane now on the way home. 2 days early but she was no longer enjoying it so I just want her home safe...

Step-lad now communicating by text... Better, but does not feel in a place where he can talk. He's a few hours away and there is no chance of getting there.

I had 3 hours sleep, which is normal this week.

I am stresssed!

[Scrump]

Surveyor, that does sound like a bit of a nightmare. Good news on the wife’s lack of pain.

[Mexican cuties]

the sharing of experiences on here helps so much, after masectomy, horrible reaction to 3rd chemo and 15 sessions of radiotherapy, although the physical side, being lopsided, nice ugly scar is getting easier to accept the mental side was and is still awful after the radiotherapy. it seemed it all just stopped. Then suddenly we had time to say what the hell just happened, the amount of people that have said "so youre cancer free right" ffs really, issues now with weight loss, gp thinks possible damage by radiotherapy to my throat, as often feels like food is stuck, although not eating much, making sure i am eating smaller bits. had hubby concerned several times when i couldnt get a small piece of fruit to go down. now have appointment for camera down throat and stomach to see whats going on, so hard not to think feckin hell throat cancer!!. which gp wants to rule out, christ

didnt realise i had to check the completely flat area as well for any lumps, got told that a week ago, and the horrific prosthetic fake boob fitting, christ, it was a sales woman that practically wrestled me into a bra, no empathy, or compassion, when we arrived, she stated "you only have 20 minutes", then while i am standing there with tears running down my face, she said to husband "doesnt she look hot", for christs sake, did feed that experience to the breast cancer nurse, the thing is still in the box under the bed, that was such a degrading experience which isnt uncommon apparentely!, like many others on here, walking back into the cancer ward for oncology updates to be asked "how can i help" for gods sake, when signed off, oncologist said "your post menapausal", and ?????

sorry to rant guys, wish we had some one that could have prepared us for the crappier side, leaving appointments not knowing what just happened, why didnt they explain this, that and the other, the radiotherapy team at the churchill couldnt have been nicer, always talking to you by first name, although it was pretty much one in one out, never made us feel like that, hubs came in before a zapping session so he could see how i got set up, and they did their best to give us the first appointment so it wasnt too disruptive to his day.

i genuinely belive this bit is the worst, one of the nurses said she hears all the time, they can take my hair and my boob, but my god mentally i am struggling, hugs and thoughts to all on here, we had no experience of any of this until september last year, and i feel so bad when i feel so low, yet people are worse off on their journey, and yes family, what family, now under psychologist, and dietician, husband has been so strong, carer, comforter, punch bag, not literally!! and still doing his job, just trying to get some confidence back now, some small car shows, sat behind the car, with the new shape, appreciating other motors, and car chat, lovely, not as bad as i thought, although have had some proper wardrobe meltdowns, getting there, and almost felt like the good old normal days.

sorry for war and peace, but god that just really helped at this moment - thank you all

[Scrump]

Mexican cutie, not a rant and no need apologise even if it was.
Sounds like you have been through a lot, I hope you manage to get your head back into a better place and enjoy time with your husband.
Don’t let other people get you down, they are either ignorant and rude or maybe just don’t know what to say as they haven’t been through it. Either way, let them be who they are and you just get on with living your best life.

[Mexican cuties]

thank you scrump

[motco]

MC do please carefully inspect the 'flat' area, along the scar line, and in the armpit. A family member of mine had a recurrence in both the scar line (after a number or years) and the axilla (fairly soon after the first event) and both were quickly dealt with because of her vigilance. Best wishes.

[surveyor]

M/C. So early in our journey your experiences make for thoughtful reading, and probably not one that I will show my wife at the moment. She had a lumpectomy on Friday and we get further results towards the end of the month.

Cancer is cruel, and I am having to adjust my own attitude and approach, as someone who very much prefers to avoid emotion. I hope your loved one's are supporting you as best they can and that you have up days to accompany the down days.

I wish you the very best..

[Mexican cuties]

thank you all, especially the scar advice, had no idea this area had to be checked, only the remaining boob, look good feel better workshops were really good and helpful, helped when i cold capped for the 3 chemos i managed, breast care nurses didnt even mention this was an option, just told me to cut my long hair off as it would be less distressing when it fell out!!!, cold capping did save the hair although thinned slightly.

take a list of questions to every appointment, and if you can check as much as you can, i was nearly put on 2 years of oral chemo as the oncologist looked at the overal area size of the cancer, not the mass, i had small mass which i was told i would never have felt, thank god for the routine mammogram that picked it up, but the dcis surrounding the small mass meant the overall area was larger and the risk of cancer getting bigger and spreading, was instant masectomy. was told masectomy only needed, no further treatment, then after lymph nodes taken out, 3 out of 4 positive, then chemo entered the discussion, then radiotherapy, so we went from believing by christmas 2023 all will be done and we would be back to a normal, and still on this journey now 7 months later. still sinking in

only the radiotherapist oncologist picked up that the mass wouldnt need oral chemotherapy, ive come off of a lot of the breast forums, so scary to see how many women/men recently diagnosed are reaching out to random people as they arent getting all the information from the first point of being told.

obviously this was so new to us, never had any experience of any cancer thank god, so all the leaflets etc, just couldnt prepare us, big learning curve, if i can offer any insight, if it helps, feel free to contact direct, we just went into every appointment with no pre- conceptions towards the end, made it much less emotional than previous appointments, and we have learnt its ok to have a bad day, then take the good days, and we acknowledge together that there will be rows, tears, breakdowns, space to time out, but then we breathe, talk and hug, and try to be more tolerant. i was told there is no manual for this crap, this is your journey, never a truer word, but grateful to still be here , and again thank you for the support, you deffo find out who has your back, and we dont have a massive support network, so this forum helps so much, cancer is a total bstrd, cant believe after years of watching stand up to cancer, when odds were 1 in 3 will be effected, to see it go to 1 in 2, the reality of being 1 of those stats was hard to take in. maybe see some of you sitting in a field behind your pride and joy car soon x

[motco]

I see you're in Bucks MC, where are you being treated? Stoke Mandeville? Wycombe?

[Fer]

MC, thank you for sharing. It's good to talk/share/rant here, you're among friends, strange ones, but friends all the same

I learned that people do say the crassest things, and many a time I have wanted to shake someone by the throat and ask them if they ever think before opening their mouth?

(Sorry, me ranting now).

Your husband sounds a saint for the way he's supporting you. I wish I'd been that useful for my wife.

[Mexican cuties]

thank you all, there is no manual for this bugger, baby steps, days at a time i have heard, and now finally get it, treatment varies between wycombe, stoke and radio therapy at the churchill, which has now finished. One thing we have learnt is not to take things too personally, easier said than done, and its are illness to deal with how we can. there is fantastic support out there mcmillan etc, but we tried to do it on our own, now getting help to get through the fall out and the mental side.

wish you all well with what ever journey you are on, and what stage, been told a lot of times "you have got this", but its ok to have days when you genuinely havent, xx

[surveyor]

Venting today.

Post op results for my wife are good. They got it all, and the lymph nose biopsy was clear.

My wife is really scared of the Chemo and reluctant to do it.

Her consultant is on holiday and the stand-in was a joke. Unclear and confusing is a charitable way of putting it. The treatment plans appears to have changed to 2 different types of chemo and gone from 4 months to over a year. That is a long time to feel st and I'm not clear as to why it has happened. The doctor was unable to explain clearly, and although the nurse who took the time to go back over it with us (mainly to calm me down as I was beginning to get frustrated with the lack of a clear response, along with to be fair my wife jumping onto anything which might suggest chemo is unnecessary

The nurse apologised for the consultation...

Future looks confusing.

[popeyewhite]

If the oncologist says chemo then go with the chemo. Make sure all the cancer cells are gone. Some chemo drugs are worse than others for nausea, not all will make your hair fall out.

[Mexican cuties]

also look into the various look good feel better workshops, invaluable with chemo and cancer tips, didnt know cold capping was a thing but it saved a lot of my hair.

just off to the hospital for results of the biopsy they took from the lump in my oesophogus last thursday, and results of the ct scan sunday just gone, to say i am completely worn out, worried, anxious, you name it, wish the breast cancer oncologist had taken us more seriously when each time i saw him, i told of weight loss, lack of appetite, only when i had issues swalling gp got gastroscopy organized where they have found a 2cm tumour. cant stress enough listen to your body, and reach out when you need to, and push push at these appointments, good luck to your wife, easier said than done when people say dont worry, really struggled waiting this week for this appointment.

hugs to you all x

[Adrian E]

I haven't posted an update in quite a while - long story, short = bowel cancer 2020, spread to liver and left lung - 6 ops in total. Last lung op November last year. 9 months of chemo total. Liver been fine for over 2 years now, bowel fine since original surgery. Scans every 4 months, and in March this year there was a 3mm 'nodule' where they'd snipped a quarter of my left lung out......

Fast forward to now, and I'm getting divorced (not my choice at the start, but come round to the idea now after all the st's been thrown at me!), having to move out of home, being denied access to our son (who is very close to me) and generally having a pretty rubbish time of it.......

After my March scans I was convinced, because they took 3 months to tell me to carry on to the next scans, that it was going to be bad news in July. Turns out my bloods are OK and CT indicates no changes. Does turn out I should've had a colonoscopy in July, which they've only just realised. May not be enough to allow me to stay in the family home, but being based 3.5 hours from the hospital isn't ideal when you've taken the prep the night before and need accompanying to and from hospital!! Can't afford to rent near where we live now, after still paying the bills on the family home.

I'm grateful to still be here, but my god does someone REALLY have it in for me up there. Not sure what I've done to deserve all that's been thrown at me this year, in particular. Having some very low days, but people around me have been amazing. they have families of their own, so it still feels very lonely at times, when you're used to having noise about all the time.

Got to wait till November now for next routine scans, which will take me up to the period between lung op 1 and 2 in terms of repeat cancer. Hopefully they did get it all, but only time will tell.

I'm struggling, to be honest. The lawyers REALLY know how to charge!

[indigostr]

So sorry for you adrian.
My wife been through the ringer with this and would no doubt of given up if it wasn’t for me. With a broken back there’s no chance she could have attended any hosptial appointments without me , she would have been in a hospice since January. I ask her not to keep thanking me , surely it’s what we sign up for when we get together or marry. Good luck and shame on your wife.

I’m getting less and less help from wifes family as the weeks and months go by , her son hasn’t visited for nearly 2 months again now. I have to stop myself from getting angry in front of her after he does his weekly 10-15 minutes call to say how busy he is etc etc , nothing hasn’t stopped him holidaying or visiting friends 100’s miles from his home the last couple of months. Or there’s the occasional text to say ‘hope you’re feeling better this week mum.”. What a tt.
Our friends who watched him grow up as she put him on a privileged path in life think he’s a ct and of them 50% will have no problem telling him that when the inevitable day comes and we celebrate her life. No one can believe he’s become this person.

Tuesday will be the first round on oral chemo where she has managed to complete the 3 week cycle. Her body just hasn’t coped with higher dosages of morphine or chemo that they have tried and it takes 4-6 weeks for her bloods to return to normal. It really has been a learning curve and continues to be. We are now onto our 3rd oncology dr but there is no magic cure for my wife. I am the full time carer , i haven’t worked for over a month now. I have found jobs around the house that i’ve put off for months/years that i finally have time for and she always has company between sleeping after the constant medication too ups. I am answering doctors questions on her health and how we should go forward. Finding more and more that the doctors are also learning as we go along as every patient is different. The hospice nurses that visit are very helpful and pointed me in right direction for a day centre , wife’s physio and putting in place an LPA for when she isn’t of sound mind or unable to communicate. I wrongly assumed i would be able to speak for her but apparently not and advised that everyone should have one in place ‘just in case’.
Another 2 friends have been diagnosed with secondary in the last month , is this because we are living longer that it’s so prevalent now? ,when i was growing up I can only remember two of my close friends having a parent with and dying of cancer.
It really is a bh , as a carer watching a loved ones slow demise is awful to witness and upsetting . My wife is a totally different person to who she was just 6 months ago, i really do wish we could trade places because she is fighting so much pain … all with so much resilience.

Going around and around in my head are the doctors words in 2021. “The tumour in the breast was so small ,20mm ,we havent staged it , take letrozole for 5 years and you’ll be fine”. How fking wrong could they have been.