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

Skap and bridget
DD cancelled the hospital appt wth Oncologist next Wednesday due to Corona. Last time I saw her was ages ago. It is a follow up after the Rads that ended 28th June 19.

After being rummaged around in my poor traumatised bladder, to take a biopsy of the other CIS cancer which needed immune therapy etc, the lovely urologist was somewhat perplexed when he said that they looked everywhere in my bladder for it but couldn't find it.
The results letter arrived soon after which said no evidence of any cancer in the bladder. However, it is known to be a recurring one and must check for regrowth in 6 months time.
Think they went a bit too much digging around for the CIS as my bladder is now more overactive than ever and does not know whether it should be coming or going And It was doing so well after the rads side effects disappeared - after 6 months.
The oncologist said that is was likely to have shrunk after the rads, but no info regarding that from urology letter.
Good luck to all of you.

Just sending a wave and good wishes to everyone who's in pain, anxious, or struggling in any way (that's probably 95% of us!).
DP and I are very happy to be out of London for a few days (in beautiful Dartmouth). Her DS and his partner both have flu.

I drew a picture this morning (art is my go to when I'm stressed). It's for all you amazing people that are fighting on xxx

I love that, @Hippiechick162!

I had a phone call from hospital this morning and was worried they were cancelling operation but it was to check I was still ok to attend .
Feeling a bit wobbly now but have had a glass of ( Medicinal ) wine , it will be fiiine .!

Will be thinking if you Trumpton

4 days @Trumpton and it'll all be over! I'll be thinking of you x

@Trumpton so glad it was just confirming! Thinking of you.

Appointment for Monday has been cancelled with them trying to keep non essential people out of the hospital.
Got a phone call yesterday instead telling me they are handing me over to the surgical team so no more check for now!!!!!!
Hopefully will hear from the next week and everything goes ahead before they start cancelling surgeries.

Haven’t been very active on here this last week but welcome to all the new people.

Is everyone still going about their normal life? I have been but my family in Australia are outraged and telling me how stupid I am being and I need to stay in side and not risk the CV. And now I don’t know if I’m being too laid back about it all.

@Hippiechick162 love that!

@citybumpkin You're treatment is similar to mine. My tumour started as 5cm with spread to ducts throughout the breast and lymph nodes in the armpit. I'm currently on cycle 4 of carboplatin and paclitaxel (carbo 3 weekly and weekly paclitaxel). Cycles 5-7 will be FEC. I'm on a clinical research trial and I have the trial drug during cycles 1-4. Once chemo is over I'll have a mastectomy followed by radiotherapy. The goodness is, even for my large tumour and spread, that I'm responding well to treatment. The oncologist had to play hunt the tumour on Wednesday and couldn't detect anything abnormal in my armpit (by touch). I've had a PICC line installed through which my chemo is delivered. Weekly chemo is hard on the veins so it's worth thinking about.

@Hippiechick162 love that picture.

@Trumpton I'll be thinking of you.

Small update from me. Since being diagnosed I've been keen to try to keep some sort of normality and continued to work, going in 2-3 days a week. As of Thursday just gone I'm not allowed in work and have to WFH due to the risk of COVID 19. My boss has already wished my DP good luck as he knows I'm going to go stir crazy and will be a nightmare to live with. They're going to review it at the beginning of June once my chemo has finished.

I also started psychotherapy this week and found it useful. For anyone else struggling mentally it's definitely worth considering, even you only attend the first session to work out if it's going to be any use for you.

Goodness should read good news

Sorry I’ve not been around, I’ve been trying to put everything to the back of my mind, and have been distracting myself with all the Covid-19 news. I’m still waiting on biopsy results. I think I’m going to go insane soon. The lump is starting to be uncomfortable again too, which doesn’t help with trying to forget about it!

@barberousbarbara - thanks for the tip on psychotherapy. I am thinking about it, after having a weeping fit yesterday. My DH had two separate diagnoses of cancer last year, and I’m overwhelmed with worry. My hospital has also closed completely because it is full of virus patients. There was an announcement yesterday. Cancer surgery, not sure about other treatment, is the only thing that is continuing.

Daisy - have you had a personal letter from King's? A friend sent me an internal document yesterday saying that they were closing outpatients and no elective surgery except for cancer and life-threatening conditions. Alternative arrangements re consultations by phone.

Nothing about cancer outpatients, chemotherapy etc. I'm v much hoping that I'll be able to have bloods off-site at a community GP centre, a phone-call from my oncologist and an electronic prescription of pills to my nearby pharmacy. Every cloud...

I'd definitely take up the psycho-therapy option. I've been on a v low dose prozac/seroxat anti-d for a long time to stop physical symptoms of anxiety and it's been a godsend through my 2 surgeries and the aftermath. Just steadies me and gives me a bit of detachment.

@daisypond My cancer nurse recommended it after a second week of me being in tears during my clinic appointment. The psychotherapist is based within the cancer centre I'm being treated. It's worth asking what support is available. I can get counselling through work but this is cancer specific.

It's also helped working out with my nurses my concerns that they can do something about. My anxiety has reduced since I stopped cold capping and shaved my head, and yesterday was the first time my obs were normal the first time they were taken after having a PICC line installed. I have a real cannula fear following my previously juicy veins starting to collapse.

So final packing today , flight off tomorrow . I have to pack for two weeks . The first week in hospital then I am going to friends for a week as the surgeon wants me to remain near hospital for a further week . ( I live off shore )
That has made planning interesting as DH is flying over for one day to visit but the rest of the time in hospital I will have to be self sufficient with no visitors .
Money
Watch
lip salve
Ear plugs
Eye mask
Water bottle
Passport
Tickets
Day bag
Pants
Control pants( post op )
Socks
Bra
Towel
3 trousers
3 tops
Dressing gown
Pyjamas
Hats
Bedsocks
Mastectomy cushion
Kindle
iPad
2 phones ( one local one UK )
Power pack
Chargers
Headphones
Meds
Sewing kit / manicure
Soap
Make up
Pen note book
Breakfast bars
Choc
Marmite
Ricecakes

Golly it looks a lot but I have put it in packing cubes in a soft bag and it looks ok .
Leaving rings etc at home for DH to bring over when he visits .

I danced out with our dancing group last night . Wore a snazzy red soft hat trimmed with pearls that looked great with our red jackets . I did ask our leader if she would prefer me to wear the wig but she was happy for me to be myself .
Surrounded by love

Trumpton. Very best wishes for the next two weeks. You sound very well prepared. Lovely that you have friends near enough to the hospital. Having to stay in an hotel would have been horrible. Adding some virtual to your list. The hospital probably wouldn't approve of the real stuff!

Hi @Trumpton have you remembered your post surgery bra as well?
You'll be given a locker when you arrive and dh couldn't come with you from the door of the unit...my dh literally had to give me my bags and go. Keep a book or something available for that part because it's waiting around on a chair with nothing else. I was second down so not too long but still 3.5hours of sitting around. She's lovely and all the staff on the ward were great. Good luck xx

Real book is a good idea.
DH is not even travelling from island with me as I knew that it would be goodbye at door .
I think I am first on the list , let’s hope so .
Yes I have post surgery bras .

Good luck @Trumpton, hope everything goes very well.

I have a mental picture if you wearing a cool hat, with the big bag over your shoulder, marching through the door tomorrow with a determined expression and your head held high.
Go @Trumpton.

trumpton best of luck for tomorrow. You might want to consider a multiplug extension lead if you have one. There only ever seems to be one plug free in hospital. It's useful having an extension lead so you can use your phone, etc when it's charging (as charging cables are always very short!), and being able to charge multiple devices at once is really useful. Wishing you a speedy recovery!

@redspook
Have you bugged my house with hidden cameras .?

@Zorgothslugofdoom
I have multi USB adaptor and some good long leads .

@meercat23
So you don’t think I should take my tins of G&T ? Bah !

@Hippiechick162
She remembered you ! As you say a lovely person .

@Bloodybridget
Thank you for the good vibes .

Will update in a few days . Gah ! Is it too late to change my mind ?

Good luck @Trumpton hope everything goes smoothly.

Good luck @Trumpton, hope all goes well!