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

@meercat23
Yes ! It’s upside down outside the French windows as the DGC used it as a boat the other day !
We bought it in 1975 from Habitat !
Obviously my brain is not back yet .

Hoping every one is doing well .
I am hoping to have a gentle poddle around the garden tomorrow but will have to warn DD or will be pounced on by DGC who live next door and share our garden and don’t understand why they are not allowed to hug me .
Ah well must be nearly bedtime .

For those who are going through the mill or regarding it with horror hang on in there . Small things can still bring joy .

Hey @Piggles39 that makes sense. I've not stopped eating the last 2 days. Best stop that nonsense. How are you getting on? Xx

Just popping into the Patience to say happy Mother's Day to all the mums here.

@Nonotmenori thanks for asking, I’m definitely starting to feel better now chemo is finally over.

And it has worked! I had all my follow up scans and tests last week, and although in October at diagnosis I had 3 large cancerous tumours in my breast and cancer cells in 3 lymph nodes, they can’t now find anything there. So they are rechecking the latest biopsies to make doubly sure they haven’t missed any cancer cells, and the consultants are now arguing over whether I should still have a mastectomy, which has been the standard treatment for inflammatory breast cancer for many years, or whether they can just do a lumpectomy, and then as long as nothing they dig out shows any cancer cells, leave it at that. I’m hoping for lumpectomy not least as then I’d just be a day case which feels less risky with the risk of coronavirus floating around (I have bad asthma)..

Apparently the combination treatment for HER2+ I’m on has only been around for 18 months so there isn’t a whole lot of data on results yet - I had EC then paclitaxel, started herceptin and pertuzemab at the same time as the paclitaxel and will continue on the h+p until the end of the year.

Hi I had my thyroid removed 5 weeks ago due to graves disease. I had my post op last week and I have microscopic papillary thyroid cancer. I now will have another op to remove affected lymph nodes and then RAI. Im so scared 😢

@Nonotmenori

I am hoping to have a date set for surgery this coming week, and to find out if I’ll need chemotherapy or not too, but with the virus anything might happen. Things seem to change hourly. I’ve started on tamoxifen so that at least must be helping. I’m trying to forget about it as much as I can, but have a list of things to sort out before surgery.

Congrats on finding a place to move into solo, having your own space will feel amazing!

Hello @concernedgirly, you are welcome here. It sounds like you have already been through a lot, and this ramps it up even more.
I don't know if there's anyone around with similar cancer and treatment, but if not you will get support from all of us who know the fear only too well.
Do you have a timescale for your further surgery and treatment?

@redspook
Thanks, the doctor couldn't give me a date of when the surgery/treatment will happen because of Coronavirus everything is on hold.

A big hug to everyone! It is so tough thinking of cancer treatments especially at the time. I am billed to start chemotherapy on Friday for breast cancer which mutated from non estrogen in 2017 to estrogen positive whilst remaining HER +++ in 2020.

I'm thinking of what to pack in a bag, the center has already said no visitors allowed which means husband won't be there to support, so needing advice, what do I take along!

Also, how are you all keeping in this period, are your people at home going out at all?

Hi @kimsha, I found this list handy when I was packing for chemo sessions: www.tickingoffbreastcancer.com/chemotherapy/chemo-prep-planning-part-2/

Think what will keep you warm, fed, hydrated and not bored!

Also some headphones or earplugs - for many of my sessions I seemed to be next to a chap who passed the time by doing very loud conference calls and if I hadn’t had noise blocking headphones I might have had to strangle him with my IV tube...

Hope it all goes well for you on Friday.

Hi @Kimsha. Do you know how long your treatment will take? Mine took five hours so I had a lot of time to fill. Also I didn't want to talk to any other patients, although I realise it's a source of support for many people.
I took my tablet with tv series downloaded - generally light, comforting stuff. I watched the whole of the Colin Firth Pride and Prejudice yet again. I had my headphones on most of the time and hoped not to appear rude not to be chatting.. Also a book, chocolate, a fancy nail file and buffer, a cushion.
I had a big bag.

Just got home from wythenshawe hospital (been there since 8.30!). Because they have brought my surgery forwards to tomorrow,
I have had all of my pre-op appointments today, so have had magnetic seed/clip inserted, mammogram (to check it's in the right place) pre-op appointment, radioactive tracer dye injection in boob (blue boob!), ecg, blood tests (fainted!), back to pre-op ward, then for boob photos! My DH made me take lunch with me this morning, and I laughed at him - so glad I followed his advice! Got to be at hospital for 7.30 tomorrow morning- should be one of the first operations, so hopefully home tomorrow afternoon/evening.

oh @Zorgothslugofdoom

That’s where I had my mastectomy last Tuesday .
They are a fab team .
Are you under RH ?
I was so well looked after .
Good luck . I will be thinking of you .

@Piggles39 That is such a good site! I never even thought of an 'emergency bag' even though I did land in hospital for neutropenia in 2017.
Thank you such a handy list, I will be taking a big bag like you @redspook I don't know how long it would be but I'm having Carboplatin, Docetaxel, Perjeta and Herceptin.

Thanks ladies

My Intro.

Kimsha - London based, Nigerian born.

First diagnosed (30yo) - Feb 2017 (HER2+ felt a lump right breast in Oct 2016 was dismissed by GP, went through A&E in January to get it checked) - had FEC-T, Perjeta & Trastuzumab before Lumpectomy and Radiotherapy in 2018

Met DH (again, we were Uni classmates) in Aug 2018, married May 2019

Second diagnosis (33yo) - Feb 2020 (HER2+, Estrogen+, Lymph node involvement. Felt a lump in September, believed it was scar tissue, couldn't get it checked in Oct due to pregnancy, radiologist won't scan me, asked consultant for other scans, they didnt budge, lost pregnancy in November, travelled in December, saw two eruptions on my right breast, called Radio immediately I got back, turns out to be 3 different tumours under 2cm each ) - having Carboplatin, Docetaxel, Perjeta, Herceptin and Tamoxifen. Planned Single Masectomy.

Pheww. I'm hopeful, excited to live every single day. I feel so much love overall than I've felt in my life before these happenings so these are good days despite the struggles.

Welcome to @Kimsha and @concernedgirly. Sorry you find yourselves here, the club no-one wants to join, but it's a good place to get support and advice. @LemonsNVod, I hope you get your date for surgery soon.
@Zorgothslugofdoom wishing you a smooth ride tomorrow.
@Crabb it's good that you're happy with the decision not to do chemo. But like many other cancer patients you're having to cope with a rapidly changing picture and it must be unsettling!
@peaceanddove that is excellent news, really happy for you!
@Nonotmenori congratulations on getting your own place to live. How are you feeling now, a few days after chemo?
@Trumpton how are you, hope you are starting to recover from the surgery?
@Piggles39 wonderful to hear good news from you too!

My small piece of news is that I got a text message from the NHS coronavirus lot this afternoon telling me I'd been identified as someone at risk of severe illness if I got it, and I should stay indoors at home for 12 weeks. They said I could open a window! I was gobsmacked (and horrified) as I don't come into any of the categories for this measure. DP is very anxious about the virus anyway so I didn't feel I could just say I wasn't going to comply - I called my GP practice and spoke to a receptionist, which wasn't much use, then I rang our NDN friend who is a GP, and he said probably I just got the message because there are recent records of my chemotherapy. So he agreed with me that it's OK to go out for walks. But DP and I have agreed that we won't go into shops, so now we're completely dependent on the kindness of neighbours, until a unless we can get supermarket deliveries. I really hate feeling so useless!

I got the text message too @Bloodybridget. It has worried me ( the lid on the box of fears is jumping up and down) but I'm not panicking.
I am seven months post treatment, and feel well. I appreciate that it's so much more concerning for those of us in the midst of it.

I got the text message as well, was expecting one having only just finished my 4th round of chemo.
Can open a window... really generous of them.
And stay at least 3 steps away from people indoors told my husband I would be following government advice and he can be on toddler duty

Was supposed to have a pre op appointment on Thursday which they have now cancelled to keep as many people if of the hospital as they can. And it has thrown me straight back into the mindset of the beginning and all the anxiety of no clear plan and not having any idea what’s happening.

Ugh! Just found a pea size lump to the right of my armpit just above my reconstruction. My boob was sore so I was having a prod.

Can't get to see a gp, so will have to try the breast clinic I used to attend in a few days. Going to get DH to feel in case I'm imagining it first. Really don't want to go near a hospital.

Well I have just finished a telephone conversation with the chemo centre where I have my Herceptin treatments. They have agreed with me that in the current situation it makes sense to cancel the last two treatments due next week and then in April. I don't want to be going into a hospital environment unless I really have to. They think that 16/18 treatments will give me the protection I need.

Really scary times and especially for those still having active treatment or waiting for results and answers. That is bad enough in normal times.

Thanks to everyone on this thread who has helped to keep me sane over the past year. I am not going to list names in case I missed anyone out but you have all helped more than you will know.

Ah @meercat23
I wish you well .
I have Herceptin booked for Thursday but will still be in quarantine so we are thinking about that .
More worrying is the fact that I need the drain removed this week and the skin saving implant needs topping up next week and the breast nurse thinks they might not have access to ultrasound so don’t know if they can do it .
I do feel very adrift .
Also if I don’t get Herceptin this week ( 5 min job ) then it would be next week with a 2 hour stay in case of allergic reaction .
At the moment I wish I had just gone for mastectomy and no skin saving implant . Also it means two more ops and I am SO tired of being cut open !

Trumpton When you made your decisions we were not facing all of this craziness. I hope they are able to sort something out for you. Take care.

Bloodybridget,redspook and Sqiffy01.
DD got a text message as she is my carer and then I got a letter from my GPs about my high risk. What amuses me is that 3 steps is assumed to be 2 metres - not with my shuffling gait due to my sciatica and crippling lower back pain. Can only imagine that might apply to a 7' person with long legs
Good luck to everybody.

Went for my Herceptin this morning. I'm very glad I opted for the Lloyds clinic to have my treatment instead of hospital, they rang me yesterday to reassure me and said they are having only one patient in at a time and I could opt to see only the nurse, the receptionist would exit the room before I went in. I went in with a mask the nurse was fully masked and gowned. It's a risk because she's treating other people and it's very close contact but I felt the maximum precautions were taken.
Bit perturbed I haven't had a text. I have other serious health conditions, I don't know whether Herceptin alone counts? I thought it did as a biological cancer therapy.
It's not a list you want to be on but it could give access to help down the line should we need it.
DH is opening and disinfecting the mail........

Hi @Bloodybridget How are you doing? I'm actually ok you know! Hospital called yesterday and they're changing my chemo from weekly to fortnightly due to risk. Not a massive issue in the grand scheme of things.

I am signing the tenancy tomorrow. My wonderful brothers have come, taken 80% of what I own. My wonderful cousin sorted me a new bed, a sofa, cabinets and a few other things (I've no idea what any of it looks like) the boys rented a van and will upload everything tomorrow to get me in. My BF is coming over tomorrow morning to load the remaining stuff. I could cry I'm so happy. Thursday is chemo session number 2 I know I'm not going to get away easy from this one. At least I won't be stuck in a very overcrowded flat with 7 people and queuing for the bathroom anymore. (I'm a lodger in a family's flat that was 2 people now their whole family's from abroad moved in and it's Just chaos and horrible for me after 4 years it's time to go) for everything crap that's happened the last few years, my family make everything just so much better. ❤️️