Cancer Support thread #78 - Newbies welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Balkanscot- I like those. Thanks for the recommendation.

@balkanscot my feelings have changed over time. I've just worn beannies for the last 5 months and didn't feel comfortable in my one wig-for-work. But now, and knowing I'll be back in chemo until next March at least, I just don't want to do the 'cancer-look' anymore. Especially around strangers but even generally - I just get sick of looking sick. So now I have 3 wigs - all different. I don't wear a wig every day but more often. I still wear my woolly beannie out and about but when it gets warmer I have a good cap (made for cancer patients so wraps around the hair line properly). But online and other socials that will increase now I suddenly want to look more .

Slightly crazy to have declined the breast reduction offered but I just can't get my head around having any unnecessary surgery - even though frankly it would definitely be an improvement. Perhaps I'll regret it - we'll see.

I've been thinking about the whole hoping to live but preparing to die thing. I've got a small business start-up in early stages and as an analogy - many small businesses fail and it's wise to keep that in mind. But it doesn't work to keep that at the front of your mind as the end point - you have to commit to succeeding even though in fact you might not, IFYSWIM. This is me working through this as you know I am not naturally particularly positive or optimistic!

Thank you all for such a warm welcome. I really appreciate it and I feel I can be more candid here than irl. I read some of your messages to DH and he was touched by the generosity from a bunch of strangers. It’s not even 48hours since diagnosis and I feel like I’ve lobbed a grenade into the family. My mum is devastated and sisters understandably shocked and upset. I have told them they all need to pull together for the sake of the girls. One is a radiotherapist though so is obviously very comfortable around this area.

Telling my girls this morning was possibly one of the hardest things I have to do. The Macmillan advice was useful - thank you bloodybridget for signposting that. I was very upbeat but honest. They took it very differently. My eldest is sensitive and immediately burst into tears. My youngest at 11 said well it’s common so is treatable. There are worst things you can have! God knows how she could be so sensible given she’s spends all her free time on TikTok. I have said I will let them loose on my long hair before it comes out.

acinonyx2 your comment about hoping to live but preparing to die really resonates and I’ve gone in to full prep mode. I was on the cusp of establishing a new business but will put that aside for a few months. Whatever happens I know I am surrounded by love and support so my immediate family will be ok. I’ve envisioned myself on a train now that I can’t get off. I will be in beautiful scenery sometimes and others in the arse end of somewhere grim! I do recognise that the reality of the disease has not hit me yet.

I am trying not to think of every little niggle or pain I have being evidence of it’s spread.

Can I ask whether anyone has kept a diary of their time? I’m not normally a diary keeper but do enjoy writing and thought in this situation it might be useful.

@balkanscot I also want to keep my diagnosis secret from most people as in a way I feel embarrassed by it. I have felt this way all along, as though I am somehow 'responsible' for letting myself get into this terrible state of health, although the rational part of me knows this isn't true. Cancer messes with everything, I find.

Last week when I was on the day stay ward, I was chatting to a lady before we were booked in. Later on that afternoon, I overheard her saying to one of the nurses, 'I was talking to the lady with cancer and she said....' and it really upset me. Could she not have said, 'the lady in bay 4' or 'the lady over there'. Perhaps I ought to rethink my feelings on a wig after all as the scarf gives the game away.

@JeanLannes telling other people, even those closest to you is so hard. I felt that a bit of a weight had been lifted once I had told everyone important but that then brings on more difficult emotions. It is all so awful. I am not one to keep a diary but what I do know about all of this is that it is very individual. Anything that you find that will help you, or you think might help you, is worth doing or at least trying. One thing that I have found helpful is noting down all my appointments and phone calls with brief notes of whom I spoke to and the outcome. You will have a lot of information and appointments and it all gets very muddled.

@JeanLannes well done for telling the girls - I’m sure it must have been hard, but they will appreciate you being open with them. If you can bear to, it would be worth letting their school know so they are sensitive to how they react. When I was diagnosed my son was 11, and seemed ok, but got into big trouble at school for flushing loo rolls down the toilet (not his normal behaviour!). He couldn’t explain why he’d done it and my heart really ached for him

@Toofaroutallmylife hi - thank you. I reached out to someone I know who works at the school. She said they normally have pastoral cover over the holidays and she is finding out who that is. I have also let the parents of their best friends know. I do feel more in control putting this support network in place.

@FizzyOrange - good idea. I will set up a spreadsheet! Is there anything I need to know about the scans? I’ve never had any other than a Mri years ago and basic x-ray.

@FizzyOrange I felt exactly the same as you at first. I told my mother but made her promise not to tell all and sundry. I hated the idea that I would be a source of discussion. In fact, after a few weeks I did feel different about it and I gradually let people know.
The cancer scarf. That's a big label and I hated them. Wigs are bloody hot and uncomfortable but soft hats are fine. You can even buy hats with a fake fringe. My favourites were velvet ones www.amazon.co.uk/gp/product/B074G1JN99/ref=ppx_yo_dt_b_asin_image_o04_s00?psc=1&tag=mumsnetforu03-21&ie=UTF8

I did keep a diary but it became a volume of symptoms.
I also kept notes and dates about every single consultation- who with and what was said. Also asked to be copied in to every letter. It soon became a huge file.
The number of hospital visits was phenomenal and it was very useful to be able to look back and say I saw x on y date and she said z

@JeanLannes I do keep a diary - just in a word doc. I don't write every day just as and when. I also have a notebook for medical stuff but its' rather disorganised (I have a lot of notebooks...). I haven't actually taken very good notes at all! Your dd11 sounds just like my dd15.

You might have a CT scan - but not necessarily. The MRI or CT for this will need an IV dye used as well. Many of us have trouble having so many IVs/blood tests and have something fitted to make that easier - a PICC or port. Your dr will likely talk to you about that - but if not and you are concerned you could ask them. I was concerned from the start so had a port fitted day before second chemo.

@JeanLannes I have not had an MRI just CT scans. The dye they inject makes you feel warm and then you feel as though you are wetting yourself, only for a few seconds. The dye always make my heart race which perplexes the radiologists but I think it is my anxiety taking over.

I am so worried about my surgery but had a thought yesterday as I was reading the Macmillan forums. I have been so anxious about walking to theatre, having the anaesthetic and then being in awful pain afterwards with drains and things poking out of me, that I haven't really considered what this operation will do to improve my condition and will rid me of this beast inside. I feel silly saying this - has anyone else felt like this?

@FizzyOrange well you know I am very anxious about surgery too. Not the actual surgery itself as thankfully I will be asleep (wish they could knock me out for a week!). It's the afterwards - I don't really do wounds etc. Just as well we both had just one dd!! Just shows how motivated I was though. (Labour from hell ...) The nurse was explaining about draining possible seromas and my heart was sinking....

Dh is a hard core major surgery vet and just rolls his eyes at me.

Maybe this experience will cure of us of our anxiety (she says hopefully but not really convinced...).

As for keeping in mind that this torture is meant to be saving us - I do struggle with that sometimes. It's because I don't feel until I'm treated. By the tie dh has surgery he was he's been sick a long time and was eager to do anything. But I don't feel ill apart from chemo hangover.

But this too shall pass Fizzy. Quite soonish - it will actually be in the past and we will have recovered.

@JeanLannes I often think of the train analogy too. Only one way off this train - best stay on it!

God what awful typing - I mean I don't feel ill enough to need surgery or chemo.

@Acinonyx2 I am worrying about all of it - before, during and afterwards. I also am worried about my wound and there is a possibility I may need a stoma so I have an appointment with a bowel surgeon this week. I am so anxious about that as I struggle with things hanging out of me. This is the main reason I haven't investigated a PICC or port even though it would be a lot easier. I would definitely be the same as you and wouldn't want any additional surgery. Childbirth was a real ordeal for me...

@Acinonyx2 I have only been ill from treatments not from either of my cancers. I only went for a smear test because I bled during sex when I was mid cycle and since then I have had 7 months of prodding and poking.
I’d never had surgery before except a quick snip under a GA after I had DD2, I didn’t even have any pain relief to give birth to either child. I have been so scared about this surgery and emailed my head of HR to tell him what my wishes are in case I didn’t make it. He was very lovely and assured me that I would be all right.
I’ve posted because I really am surprised at how well I feel just a few days after a 6 hour operation. I can’t tell you not to worry because our brains don’t work that way but your surgeon knows what they are doing, mine did two on Wednesday and he’ll do another 4 or 5 next week. They don’t suggest what is not feasible.

@MrsPnut Thanks Yes I know it's irrational but I can't quite get proper control over it. Or rather - I'm sure it might look as if I have - but it's not true.

My sister (who lives overseas) shocked me last week by commenting that having cancer doesn't seem to have affected me at all [shock Y'all must wonder if she's talking about the same person!

Hi Fizzy I was also prepared for a stoma because of unknown bowel involvement. In fact after 26 years of crohns I was convinced I would have a stoma,( I am amazed that I have ovarian cancer and not bowel). However when they got in there they found they were able to remove some disease on the surface of my rectum without making a hole in the bowel.
So no stoma, when I woke up I thought they hadn't done the op.
I know we're all different and my experience may not be yours. Surgeon's always lay out the worse possible outcome because they have to but there are lots of positive outcomes from the op.
I have had a large ugly vertical scar from previous abdominal surgerys for years.To do the the hysterectomy they reopened this and made a much neater job of closing me back up so I now have a nice neat scar!.
Recovery was a lot quicker than I thought it would be, listen to the surgeon's and your body and get lots of rest and allow yourself time to recover. Just keep in mind your so near the end of this stage of treatment and as others have said this will pass xx

@FizzyOrange dh had a stoma for 6 months. He managed really well with it and we were both surprised at how manageable it was. The difference between us - how he handles surgery compared to me - really does show how this is pretty much all in our minds and potentially within our control.

I often think this about the pain generally. Sometimes there is real nasty pain. But mostly - the pain of things is alarming, unpleasant, annoying - rather than or relentless (even low pain gets to you when it just goes on and on...). I suspect surgery pain is like this (apart from ongoing nerve damage etc for some). Temporary and and relatively low-grade. It's the of it all that we are really struggling with.

So today I am going to try and work on some writing (non-fiction). I'm struggling to really understand it - even though . Duh. I agreed to do this when I was high on steroids - like some of my online shopping

Like a few others here I am feeling the need to get back into my life - but finding it's not quite that simple.

Hi everyone- so I have my CT scan, bloods and first meeting at the oncologist tomorrow morning. I believe the MDT is on Thursday. Is there anything specific or you recommend I should ask? I’ve been told I should have my coil removed and stop HRT and I will get my second vaccine on Friday. They are all being incredibly nice and gentle and I’m trying to decide if that’s how they normally are or are preparing me for the worst?!

Hi
I hope you don't mind me joining- looking for somewhere for support.
My mother in law who I am very close to has been diagnosed this week with stage 4 Oesophageal Cancer- she has a 7cm tumour near her cardiac sphincter and cancer cells have been found in her stomach lining.
She has been declined surgery, so palliative care is her only option. Told she has 12 months left 😢
We are seeking a second opinion but I just don't have a good feeling about it all.
Just wanted to share my story and seeks some support/advice- hope that's okay x

Fizzy and Acinonyx I was not in any pain after my surgery, I was dosed up with epidural and then liquid paracetamol. Also in a strange way the drains etc did not bother me, especially the catheter, which meant I didnt have to try and get to the loo three times a night as I normally do. There are positives ! Im 3 weeks post op and feeling pretty good. Took the dog out for half an hour yesterday, furthest I d walked but felt I could have gone further. Ive been lucky with my huge scar it is healing fine. In fact I scared myself silly pre op with all the information cleaned from various cancer forums, and actually none of that has come to pass so far ! Good luck

@JeanLannes bear in mind that until your scan is done they don't know any more than they have told you - so there is no hidden 'worst' and generally speaking drs are pretty upfront about that - it doesn't 'lurk'.

I'm curious that you are getting your second vaccine. I emailed my surgery and they said no - so did your hospital dr suggest this even though you had the first elsewhere?

@Acinonyx2 - hi my consultant asked that this was done before I started chemo and the Macmillan nurse that was at the meeting last week said she would phone my surgery to arrange it. Friday will be 4 weeks since my first so they would be able to arrange it. Maybe it’s worth having your nurse call them and insisting?

Also I did have my first - AZ - at our local racecourse which I had booked myself.