Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

Oh goodness @Nonamelass - the film sounds good, if a bit scary (I'm rather a wimp) although if something is good I will deal with scary. I really enjoyed "Hannibal" for example which was possibly the grossest thing I've ever seen but it was so well acted I sort of looked past the gore. I would suggest "Mindhunters" for anyone who likes a thriller (and @cannaecookrisotto too as I know she likes a true crime adaptation).

How are you doing today? Please don't look at test results (you too @Sbmpp ) as @cannaecookrisotto says you are your own system, stats are not relevant to you.

I know what @ForestFlowerFairy is saying re: not having to be positive and cheerful all the time, and to let those frustrations and difficulties out and she is, as usual, correct. I do aim to be more positive and forward thinking in 2026 but I am not going to lose sight of the need to "vent" and maybe have a good cry at times. In terms of New Year's resolutions I have my to do list. In vague terms it's just to be more active and more positive I think.

I am glad your son came back home for Christmas @ForestFlowerFairy but I'm sorry that it made a very difficult and stressful environment for you all. How was your daughter?

I hope you get that rest you are looking for the next few days - curl up in your lovely chair and relax. I also hope you feel better about waiting for the scans as a result of your investigations. Can you tolerate some high calorie protein shake or similar?

I have been inspired and have create a spreadsheet with various pages such as financial outgoings, details of insurances (log ins, dates, policy numbers etc), pensions and healthcare and I'm filling it in slowly

I will take a look at the MSE website about wills @cantbelieveIamhere that sounds interesting. I think I will go to the local solicitor I went to last time as I want some advice on a defined benefits pension I have and the IFA suggested the solicitor. DH and I have fairly distinct finances, except for joint mortgage and being tenants in common. I think I will break this and leave my half of the house to DS with DH staying for as long as he likes. This seems fairest. I'm not saying that DH will run off with a new woman in my absence (I rather hope he does though - his dad was alone after he was widowed and I would have liked him to find someone new) but I have read some horrible threads on here about children being excluded from their parent's wills if the remaining parent has re-married. I'd like DS to be covered.

It's really cold here - proper frost and ice (we often don't get that in the South East) so I hope everyone is wrapped up warm and, if you are having chemo today @cannaecookrisotto, and anyone else having treatment I hope it goes well.

@Ventress hope you’re ok ! just popped on to say we’ve had that type of set up since we bought our first home the notaire here suggested it, so we have usufruit as its called here, so both of us can live in the house or even rent it out and ‘reap the fruit’ of that rent but the deceased persons share belongs to the children. I do think it’s sensible as you do hear some awful stories don’t you ?
Hope everyone is having a nice or as nice as possible day xxx

@Ventress ps it’s not just remarriage either is it ? there’s also the thing about carehome fees. If that’s needed one day it can eat through even a valuable house within just a few years… so best to protect half for kids I reckon

Very good point about care home fees @Nonamelass

I think the usufruit model of home ownership is more widespread outside of the UK and I agree that it is a more sensible standard model. Hope you are having a good day and taking care of yourself x

@Nonamelass I watched “Speak No Evil”!!! At least the first half and the last few minutes 😵‍💫!! I have no words! Very creepy.

Happy new year everyone. May 2026 be our year of health, peace, relaxation, happiness and positivity 🌟 Take care x

Happy New everyone, best wishes to everyone xx

@Ventress my daughter is good, thanks for asking - honestly whilst she had her moments as a teenager she really has turned into an amazing person. Her resilience and positivity always amazes me and she has a wonderful boyfriend who supports her, which makes it hard for my son, he is convinced we love her more, which we don't, but she is easier to spend time with.
He did drunkenly text new years eve demanding money...not heard from him since!

I have an appointment come through for an ENT consultant on the 4th February, not sure if that is purely a discussion or if there will be scans the same day. I am meeting my Macmillan nurse, dietician, swallowing nurse and Rig nurse on the 12th so I'll ask and confirm what the Feb appointment entails but with any luck the wait won't be as long for final results...fingers crossed.

I really like the idea of protecting the kids half of our home from remarriage AND care home fees, I'm not normally one to support measures to stop/circumvent care home fees but I do think there's a huge difference between losing a parent before old age. It isn't just losing the parent from an emotional perspective but also my earning potential and financial ways I could have helped if still around and practical help like childcare etc so I'll be sure to ask the solicitor, luckily a lady at my book club specialises in wills and probate so I'll book in with her.

I’m glad your daughter is having a good life @ForestFlowerFairy. That is what we want for our young people isn’t it? Her boyfrend sounds great and very supportive. Having just the one I have not had to navigate the “you love her more than me” area , for which I’m probably not cut out!

i hope your son settles soon.

Good that the appointment has come through and that you have the MacMillan appointments. They sound as though they will be very helpful for you. Have you managed to get some rest?

I agree with you on the care home fees. My father in law was in a care home for 6 years. The house was sold to pay the bills and it was never begrudged. They took amazing care of him and he was so much calmer and happier in the home than he had been struggling to live independently with frontal temporal dementia.

I am down to half dose steroids now but I’m still very jittery and cannot sleep well. I had a huge row with my parents the other day. It was only politics but I have red lines. DS, kindly, said that grandad just has “lazy thinking” but I found the whole conversation very unpleasant. It is my nephew’s birthday so we are all going out to lunch. I have assured my sister that our argument is over. We need to stick to practical stuff (there is enough of it after all) and avoid politics. It’s just a shame because this is not the person he was. We used to have great debates in all sorts of subjects.

I have made a decent start on my NYR and to do list. My LPAs are ready to be printed and signed and DH and I have made several financial decisions about the house and DS’ university finances.

I hope everyone is doing well. It has been very cold, staying freezing all day which isn’t usual. Take care of yourselves.

On the steroid subject: I have a horrible feeling that I will be on them forever. Just dropping the dose over the past ten days has resulted in my breathing being more laboured. I’m not sure how to deal with daily high dose steroids. If the oncologists do say that steroids is the only option to keep the lymphangitis down should I ask for a some sort of sleeping tablet to counter the effect?

Hi Ventress yes I would. If I have to have more steroids I’ll be asking for them too xx

It’s really hard when parents get older isn’t it ? Sometimes they loose filters and it is difficult to stay patient🙄 . I agree on carehome fees ( though personally I think the ‘care’ part should deductible from their income tax bill ) Our mum is self funding in a lovely kind home and I’m glad and relieved she’s happy .
I do prefer the each person pays for themselves in the couple option though so that the kids do get something if they loose a parent early on as @ForestFlowerFairy says
It might end up all of us in our nineties in a carehome which doesn’t sound so bad either 😅
Have a nice Sunday everyone xx

Thank you @Nonamelass. Yes, you are correct. Filters are going I think. It’s not helped that I am tired and grouchy from lack of/strange sleep.

I had my blood test today. Zoledronic acid, ECG and oncology appointment tomorrow. Seemed very quiet in cancer care (good!)

I have put in my sick note for January. Feels very decadent as, with the exception the two weeks I was an inpatient, I’ve never used my sickness benefits.

I’m glad your mum is happy and settled in a kind home. Everything seems so much easier to deal with when you know your loved ones are looked after well.

I would love to be in a care home with you all in our nineties. How amazing that would be 😊

I have just read the post us bc thread (oddly missed this before now). Although my primary tumours are bc I feel a bit of a fraud as I have stage 4 and my main concern is my lymphangitis. The primary bc seems to be melting away via the paclitaxel (fingers crossed). I won’t join the other thread but I will lurk in future. I do wish everyone well whatever support thread they are on.

Hiya @Ventress is this your first time around with BC? Sorry I haven’t to be able read back too much so don’t know exactly what everyone is dealing with.I was a bit reticent about the other thread too as it’s enough to be dealing with a diagnosis without someone saying this is my third time 😱but have posted a bit especially yesterday and got great advice about where to look for info on mastectomies ( if that is confirmed to be what I’m having) If it is I think my mind is made up on going neatly ( hopefully) flat with no reconstruction. Sod it !! Don’t fancy long ops and sore tummy ( even if I could do with a tummy tuck😅)

Great news that the Ptaxol is melting the bc tumour tbf !!
I can’t believe you’ve got this far with no sick note !! I was off during all chemos and even radiotherapy. I’ll see how it goes this time as everyone is so lovely and fun that I actually like going .
I wonder what music we’d have in in our home? I often think of that 😅… 80s? A disco ball? Big hair?

How is everyone @cannaecookrisotto @Sbmpp and everyone else sending best warm wishes from snowy France xxx

Thanks again @Nonamelass. My potted history is that this is my first time with BC. I had breathing issues through August for which I was sent for lots of tests. One of which was a lymph node biopsy on a group of nodes on my clavicle. Not swollen, just in a strange location. This biopsy showed breast cancer. They changed tack from looking at my breathing issues to the primary tumour. It was now start of September and my breathing was awful and scary. I could barely move. (I thought I was going to be on a ventilator). I had the us and mammograms, breast surgeon and bcn referral. This all went rather over my head as I wasn’t well. I was admitted immediately and had the first week of paclitaxel straight away. I stayed on oxygen and had the second week of chemo as an inpatient. Once I didn’t need the oxygen (moved to oromorph) I was discharged and did the rest of the weekly paclitaxel as an out patient. I’ve now moved to ribocyclib and Letrozole.

I think the way I was admitted has meant I’ve not really focused on the primary bc. It’s grade 2 ER positive. It’s been melted (to use @cannaecookrisotto’s word) by the taxol. The specialist say I don’t need surgery. Reading between the lines it’s a waste as I already have secondary cancer in my lungs and bones.

The bones was a huge shock recently. I’m definitely still dealing with that bombshell. To mitigate the bone cancer developing I have started monthly Zoledronic acid infusions (one of these today).

I would feel a fraud on the other thread because all of these women are dealing with things which I seem to have bypassed. I am very glad you are getting good advice from these wonderful women. They seem like a really knowledgeable bunch.

Ah, the 80’s music and the clothes! Let’s just go full on and reign back if necessary 😂

I really don’t blame you for want to look at double mastectomy. I would in your position. My sister had bc a year before me (ER positive, Lobular stage 2 but a very large tumour and (thankfully) treatable). She had a full mastectomy first, plus lymph nodes removed, then 3x3 weekly lots of chemo, radio and now on ribocyclib with hormone treatment. She seemed to go through so much more stress and invasion than me. She didn’t bother with reconstructive surgery. I still think she believes, somewhere in the back of her mind, that the bc will appear in her other breast and she will end up with the double mastectomy. I obviously hope this isn’t the case.

on the other thread, where you are getting excellent advice, I don’t think telling them this is your third time will be an issue. The best advice will come from full knowledge. Your healthcare support sounds very good too.

I hope everyone is doing okay and no ill effects over the new year.

I actually went out last night! Only until 8pm and only to my theatre group but it felt so good 😊

Gosh Ventress that’s such a recent diagnosis 💕and you sound like you are dealing so well with it. It must have been very scary not being able to breath to the point were you thought you’d be on a ventilator. It might have been less ´invasivé then a mastectomy but it certainly sounds very traumatic.
Don’t you think the not operating isn’t perhaps because it’s a waste but more it would put your body through physical stress while you are contending with chemo or other medications which are keeping the cancer as a whole at bay anyway ?
I’ve met lots of people during my various chemos and another one has just popped into my mind. She ‘popped in’ to have what she was having ( took maybe an hour tops) before starting to prepare for having her kids come for xmas. She’d had BC for 25 years since her youngest was 7 😉 She made me feel so reassured !!! As I said in a pp Îve met or heard of a few people over the years that live with it like a chronic illness, and have a friend who you’d never guess.She hardly talks about it.
My first was lobular grade 2 like your sister ( it’s the one that is recurring or is another bc in that breast ,but my feeling is recurrence) so without wanting to frighten her yes I did have another one in other breast though it was ductal that time. Does she have yearly mammos/ ultrasounds? thats how my second and third have been picked up
Sending you best wishes and hope you’re enjoying your time off
Hope everyone is having a nice day xxx

Well I’m back. 😫

You were all lovely last time, in this place that no one wants to be.

Waiting to see what is happening now.
I was declared free of bowel cancer and all treatment a few months ago, not long after surgery, but it’s decided it doesn’t want to go quite that simply, or it’s post op complications.

Have another appointment on Saturday and am back to terrified again.
I’m sure someone will want to shove something up my bum yet again, and I’m not ready for that 😫. I was hoping I’d have a full year before someone wanted to interfere with me that way again.

Bugger

Hello all again. 👋

@ventress - glad to hear melting is happening. I am in awe of your sensible preparations, my head is in a spin. Definitely need to do new wills now that we are thinking the same as you that i want my sons to benefit from at least half a house and not all be spent in care home fees.
Glad to hear that you have had some good news re melting via taxel.
I have a scan coming up and results are going to be at end of January so a long wait to see if its working so far.
Also re the steroids that you mentioned, yes I would be asking about doses, and how to manage it all if its longer term, I am sure they can help manage it all.
I am wondering how @cannaecookrisotto is.

I am also very weepy and fed up and constantly asking chat gpt when I might feel better on this wretched chemo.

Hello @OhNoItsAdeno oh bugger. Let’s hope it’s nothing new but just a nice little bit of post op complications that can be sorted out. It’s the gift that keeps on giving.

Waving to all the other inmates. Keep on trudging through the chemo. Mine finished last March and I am so proud for getting through it. I’m now on tablet chemo in ribocyclib form, or “chemu”, as one of you lovely lot termed it.

Hello lovely peoples!

Happy belated New Year to you all ❤️

I went ahead with the EC last Weds and was promptly bitch slapped by it. Spent the past week living in the land of sleep and fog. Just starting to feel human again today. My mum practically had to adopt my children otherwise they’d be surviving on cat biscuits and be even more feral than they already are.

Dreading the next one so much but now only have 2 more to go.

Hair is clinging on for dear life but anymore comes out, the clippers are getting involved.

So many updates from everyone, I hope you’re all okay. I’m going to go and have a good read now and catch up!

Well I had a call back from the breast care nurse on 24 Dec. She explained they didnt know the new locum - but the other consultants did. And she sorted an appointment to speak to new surgeon which I was due to have tomorrow before my op on 13 Jan. So I was relatively chilled.

But I had a call this afternoon telling me they've cancelled my surgery again as they dont have theatre space for her list (or something). And rescheduled it for 5th February. Another 3 1/2 weeks away. And no guarantee of it going ahead even then if someone else is higher priority.

I am so fed up.

@OhNoItsAdeno
Hello nice to meet you 😊 but so very sorry you’re back. Hopefully it’ll be ‘just’´ post op complications , fingers tightly crossed for you but I totally get bugger !!! I feel that way myself ( 3rd run in with BC here) grrr Bugger
@cannaecookrisotto Phew you made it through to the other side ! Half way through now. Next one is the second to last yay 😀 then the last one is easy!!
@KimonoQueen Oh that’s awful poor you!! It’s horrible waiting like that only for it to be put off. No wonder you’re fed up

@cannaecookrisotto well done, am glad to see you back, one third of the way completed.
Glad you survived your week of hell we missed you.

I had a rest from it all over Christmas. So getting back on the healthy wagon now!
Slight cold and very tired.

I had my appointment at oncology yesterday. Different hospital. Crazy busy.

Nice dr, female again
She hadn't 100% decided yet what area to treat. Need CT scan first. I was told it will probably be the worst case so a large area as they can't ever do it again. It will also be made close to my skin so more likely burning etc. So probably 15 sessions.
It won't start for a few weeks due to the CT scan and planning needed.

She talked me through the tamoxifen side effects. Joy!

Don’t worry too much about tamoxifen. I took it twice (5 years each time) and it was honestly fine . My down to earth ( and comical ) aunt took it for ten years too and totally convinced me it was nowt to worry about and it really wasn’t. Hope you get your rads asap.