Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Ps I've not had a text or a letter, but I'm not going anywhere apart from hospital andvto my new place tomorrow.

Hello lovelies, I thought I'd check in as I haven't posted since my hideous four biopsies two weeks ago. I was diagnosed on Thursday (I did expect it to be honest after radiographer's language) and have had no time to take it in as I had surgery yesterday largely due to Covid meaning that all non-essential surgery has been cancelled and they need to "get people out of the way". Consultant was largely unconcerned as common and curative. As long as nodes are clear (which was the case at ultrasound), I can get away with a course of radiotherapy. I hope this will come to pass! After that I can expect 10 years of hormone therapy. I have had literally no time to get my head round any of it due to timescale, alongside school closure and Covid hell. Anyway, I am fine with it and have lots of support and hope that it's done and dusted fairly quickly. I have to admit to avoiding all the leaflets I've been given, I can't deal with that at the moment, I will in time but currently happy to just listen to info from consultant and nurses. Breast Care nurse was on the phone first thing to make sure I was doing my exercises!

Wishing everybody love and light!

I just finished chemo, I’m still on immunotherapy and I have severe asthma.

Spoke to oncologist yesterday - confirmed I’m high risk
Spoke to GP today - confirmed I’m high risk and flagged as such on NHS systems.

No letter or text yet, though GP did mention she’s seen several cases already where they’ve gone to people who aren’t actually high risk...

Anyway DP and I are both staying indoors other than hospital trips. We’ve been doing that for the last couple of weeks anyway. Still waiting to hear if and when surgery is going to happen...

I haven't had a text/letter either, even tho' I've just finished cycle 2 of 8 for colon cancer. Just pills, no infusions.

I'd worked out a way of avoiding my hospital. 93 confirmed cases in my borough, up from 52 three days ago. It involved an off-site blood test, phone consultation and electronic prescription to local chemist, who delivers. But hit one brick wall after another because primary care on a different IT system from secondary and off-site GP hub couldn't send my bloods to hospital without a hard copy of referral from GP, who by that time was incommunicado, swamped by phone-calls and emails.

It was clear that the best thing to do was to get myself as fit as possible to avoid becoming sick. Even a UTI could land me in hospital which sounds as if it's conovid central. Yes, giving up chemo is meant to affect my 5 yr survival chances, but not by very much at Stage 2.

So I won't be getting my bloods done tomorrow but am having a phone consultation with onc on Thurs. I emailed my Macmillan nurse and she replied that she could see where I was coming from. I'm hoping that my onc will agree and say something reassuring, perhaps a temporary pause?

I'm not blaming those on the front line, but I brought up the question of having to sit for an hour and a half with the general public waiting to get my bloods done three weeks ago. (I was told that I couldn't have priority because the queue was too long!!!) Onc seemed surprised when I asked him what arrangements were being made for chemo patients. Hadn't heard of any.

I don't trust NHS England. They've been moving the goalposts to cover up lack of resources and planning.

Never thought I'd be writing that. So angry that the doctors and nurses I've got to know since surgery 31/10 are being put at risk by not being given the right PPE.

Hope things are better outside London for the rest of you.

This time last year I was crying in pain due to contractions. Today I'm crying due to being sad and scared. Its DD's 1st birthday tomorrow and we will be spending it with mummy having blue dye injected, SN scan and a CT scan to check my lungs for covid. We haven't planned anything or bought her much. I know people will say that she won't know in years to come but what if this is the only chance I get to have a birthday with her? Some limp photos of DD and mummy. I want to be around to spend many more birthdays with her

@citybumpkin sorry your DDs first birthday celebrations won’t be what you wanted. Can you still bake her a cake and have a bit of fun at home after appointments?

@Thymeout that is such a tough decision to make hopefully will be supported it what you want to do.

I’m sorry again for being rubbish at remember people but as soon as I’m on a new page I can’t see who said what. But am reading and am here for anyone that might need to chat.

For those who haven’t got a lettee or text I was told if I haven’t received one by the 29th to contact gp and discuss.
Someone also sent me a link to the government website to fill out if we are a vulnerable person... not sure what it involves as didn’t have my NHS number with me so will do that today.

My anxiety levels are high with not knowing what is going to happen with op but apart from that I am doing ok.

Hope everyone is doing as well as they can in these times.

Hi everyone, for some reason I couldn't get on to the thread! Hope everyone is ok. All is crazy. Can't quite believe it all. Never a good time to have cancer but can't help but feel truly shafted when an oncologist is on ITV saying that Cancer treatment will be a luxury treatment! Sorry just needed to rant.
Take care all xxx

A luxury treatment. WTF!! I didn't see it so no idea what point was being made but what an unfortunate way to describe it.

@Hippiechick162 whattt??? I didn’t see that! What was the discussion leading up to that?
What happened to cancer treatment wont change. My sisters want me to fly home to oz to get surgery. But assume they will eventually be in the same position.

Thanks Squiffy. There was something on the news last night about a trust in Essex being overwhelmed with conovid cases and having to delay both surgery and treatment for cancer patients. Risk too high that they'd pick virus up in hospital. One woman has already died who only went into hospital for a gall bladder op.

The NHS was meant to be requisitioning private hospitals to help maintain a normal service for cancer etc. Most of them have pretty poor ICU anyway, so not suitable for the virus.

But nothing further in the news. 2 private Sloane hospitals near me. If we're all in this together, surely all private non-essential surgery should be postponed. NHS routinely takes on BUPA cancer cases. Time for it to be a two-way street.

@Hippiechick162 WTAF?! Luxury treatment?!

Here I'm having a CT scan of my lungs to check whether I have covid prior to surgery on Friday. Its all too surreal.

@ Skap
I am very interested to know how your DH disinfected your mail?

He was saying that operations would still be going ahead but treatment beyond that would be pushed back as it would be seen as a luxury that is prolonging life rather than saving it! It is all very surreal as you say @citybumpkin! It is a very unfortunate way to describe it, I'm hoping that what was meant to be said was that if it is not detrimental then we will hold off on active treatment until such a time as it wouldn't be dangerous to the cancer patient, not that it's a luxury! I was just so annoyed when I watched it!

@Hippiechick162 In my case I can only have surgery, rads and chemo. Chemo is needed as its aggressive. There aren't any further medical treatment/meds I can have. All this feels like natural, or rather, enforced selection.

digerd I was being slightly tongue in cheek but he has been opening all mail, disposing of envelopes and washing hands before looking at contents. He also wiped down everything that came in shopping delivery.

Interested to know how some of you manage to chat to your GP? I can't even get through on phone?

Phone call from oncology unit to say they have booked me in for Herceptin injection on Monday 6th April when I will have been out of quarantine for 3 days . It means I will have to stay for 2 hours in case of allergic reaction .
Still waiting to hear about drain and dressing . But am still draining 60ml a day and need to be down to 30ml . But.... the bottle will be full before then and it has a security cap on .
Had another toddle round garden this morning .
Still in quite a lot of pain and don’t know if this is normal . I know she had to cut into muscle and said it would be more sore than just a straight mastectomy.
I will wait for bnc to ring or ring her on Friday if I haven’t heard .

@Thymeout I read a bbc article that all private non essential surgery was to be cancelled as well.

@Skap my gp called me yesterday just to check in and ask if they can add my details to a website called coordinate my care something all all hospitals can access so if I end up in any hospital they know my history.

I’m hoping that this new ‘hospital’ that will hold 4000 patients will help get the normal hospitals under control and will help. I’m crossing everything.

Seriously considering flying to Australia but to risk of me getting it on the way is so high.
Can’t decide which is higher me catching travelling to somewhere I might get the surgery and sitting and waiting here and not getting operated on.

Hi @Trumpton I'm still in pain here and mine was on the 27th February! Mainly under my arm and around my shoulder but it's hard to get hold of anyone to check and the post surgery physio has been cancelled etc. Try to rest and not do too much. RH was great but all this has thrown it all out of the window, I'm not even sure about stitch removal.
@Squiffy01 I'm sure you'll get the surgery because that is essential.
Take care everyone xx

The paracetamol and ibuprofen are just not holding the pain down . I have just had a quiet sob into my pillow and will try to nap .

Dr sent co-codamol . We are vair lucky here with our Drs .
Just taken two . Sod the bowels .
Oh hippie ! And you are still stitched , that’s a month ( just in case you didn’t know )
I am so over this shit !

Spoke to consultant, my surgery is now on hold for at least eight weeks as the risk of catching CV while in hospital (this is Guys in London) deemed higher than the risk of not operating just yet (due to my asthma not just the being immunosuppressed from chemo/herceptin etc). I still have to go in every three weeks for herceptin and pertuzemab, though.

He also said that the NHS have taken over London Bridge hospital (which is a private one ) to use for their non-cv patients needing urgent ops and care.

On our way home from hospital . Pain ramped up until I was not coping so rang ooh drs. Drain has stopped working and pressure building but, of course, nothing fitted in Manchester is the same as here .
Oramorph given and back in the morning when the breast surgeon here can take over .
Dr was very happy to admit me but I feel better at home and if it does get bad again I can go straight back in .
Hey ho . He said I could take co-codamol as well and that should hold it all down .
Poor DH is shattered . I am pleasantly fuzzy .

Joining you guys as 8 days post surgery for a sudden diagnosis of a brain tumour. Don't know anything more just yet as they did surgery and sent me home to avoid any covid as quickly as possible.

Trumpton. I hope they can sort it out very quickly for you today. I guess the difference between places is just one of the difficulties in two nite treatment.

Hello @iwillnevereatspaghetti, and welcome.
How are you feeling after the surgery? Do you have timescale for finding out what happens next? As most of us here would confirm, the waiting and uncertainty before you get a treatment plan is the very worst time.
Do you have anyone at home with you?