Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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@TopOfTheCliff Thank you so much for the quick reply (as I googled frantically...yes, I know). Very pleased to hear that your swelling is not a major issue and that you do not need a compression sleeve. Reassuring also to take from this that not all swelling is necessarily lymphedema requiring lifelong and uncomfortable interventions like constant compression. I will get myself looked at in any case. Would love to get back to sports I enjoy, some of which require quite a bit of arm effort - in my case wild swimming and cycling, though sailing sounds like it would be quite exhilarating!

On the scars, the physio I saw after surgery showed me how to massage mine which I did religiously and the arm pit one has really faded, 11 months in. My breast one is a bit lumpier after radiotherapy. But both are better than my 18 year old c-section scar when massage was never mentioned. She explained it helps the tissue form more regular bonds. Not sure if this advice is standard though?

Not sure if this advice is standard though?

I was told that too, by my surgeon, and also to keep them taped for however long he'd said, forgotten now. He was particularly concerned with the left one which amuses me no end because the current plan is to come back later and chop that whole boob off. I like the trait of perfectionism though 😁

@isaxx i do a lot of cycling when well. Initially riding 20miles made the nerve pain worse but the swelling better. By 10 months on from lumpectomy no 1 I was cycling 200km Audax . No extra pain from the arm just the usual post ride aches. I am currently at rock bottom regrading cycling as I have raw painful blisters on my feet still and can’t walk. I am looking ahead to the autumn when things should settle down and I can restart the climb back to fitness.
Incidentally it was massaging the lymph swelling away from my right breast that found the tiny sinister lump on the left side 8 months after a normal mammogram.

I had a mastectomy with immediate implant reconstruction (nipple sparing) 28th June, when I went for my first dressing change a week later the appt turned into quite a long one as the surgery incision was made part way round my areola and then down - so like a question mark. After 3 dr's came and looked at me, each getting more senior I was told it was dying because of poor bloodflow. When I see the actual surgeon she says all is fine. Roll on a month later and went to have my dressing changed today - another long appt with lots of second opinions going on, seems I'm having surgery tomorrow now to remove the nipple - I have requested a change of surgeon, as from what I can gather from the conversations between the second opinion people (including the head of breast surgery) is that my (now ex) surgeon has some unorthodox ways of doing things :( . During all this I discover that my appt next week to see the oncologist for the first time (to decide whether chemo will be necessary or not) includes an appt to fit a Picc line so I guess thats answered that one. It's been a stressful day :(

@Scandimandy that sounds like a lot for one day. :/

@Florabritannica how did it go?

@Scandimandy that does sound really stressful and also really shit, I'm really sorry x

@Scandimandy that sounds grim. So sorry.
Saw the new consultant today. Basically it’s neo-adjuvant chemo, then lumpectomy, then radio, then hormone therapy. To begin once we get back from holiday in mid-August and likely to go on until March or so.
Feeling utterly drained and lethargic. I know the prognosis is good, and many people are in much worse places, but it’s going to be a tough six months.

@Scandimandy that is tough and hard to accept. I hope your new surgeon gives you confidence.
@Florabritannica at least you get to enjoy your holiday before you start the chemotherapy. It will be tough but it is doable. Just take it one step at a time and don’t panic!

I’ve got a stash of blister plasters which I am trying out to make walking easier. I’m definitely not healed up yet so will push for the dose reduction of Cape tomorrow . Went out to some social events today but hobbling in crocs like the poor old thing I am currently.
bah!

@TopOfTheCliff Wise words. Call me irredeemably shallow, but my first consultant had said I’d probably have a breast reduction, which seemed like a silver lining worth hanging on to (I’m a J cup!) - the surgeon I saw today said there’d be no significant reduction in volume. Now trying to find comfort in the fact that I won’t be able to host Christmas.

@Florabritannica i don’t think you are shallow at all. I had the right side lumpectomy and had a nice pert boob afterwards. One of the few positives about the second cancer is that my boobies now match and are quite uplifted!

Yes had been hoping for new boobs for Christmas! One has to take comfort where one can…

@Scandimandy im sorry to hear about what you are dealing with. There are so many steps along the way in this, and not everything goes to plan at times which can be so distressing. But you will get through it.

I’m about to be released back into the wild. Well my house… I’ll be glad to get home but have been looked after brilliantly.

Has anyone gone back to work / started a new job after cancer treatment? I've been offered an interview for a non clinical role in a different trust. I've been off work for 7 months but only because I can't really see patients whilst on immunotherapy.

Do I just sort of style it out as 'yes I've been off work with cancer, but I feel better now and I need a non clinical role?'

@Scandimandy I’m sorry you’re dealing with so much.

After I provided some ‘feedback’ last week my oncologist called me yesterday. She was lovely, totally validated all of my concerns. She’s changed the system in her office so any patient concerns raised on the day of treatment must be brought to her to determine if a consultation is necessary. I’m happy with that outcome.

@CoachBeardsJane if you feel up to it, and you’re interested- why not give it a go? You can always leave again.
Its quality of life - do what makes you happy
x

@CoachBeardsJane it sounds like a good move if you want to work. It may even be a good CV booster to have done something different for a while. You can easily get back into clinical work later knowing the staff shortages. I have to say though having sampled the joys of involuntary retirement I am not going back!

Coach I have not returned to work largely due to needing to be with my son and the 10 meetings or so a week that get made around that and also awaiting reconstruction. I would maybe go to the interview if you want a role like that and see what you and they think. I think its reasonable to say you can't do current role due to cancer treatment but you would really like to stay in the field and this job sounded really interesting type line.

Scandi and Floral So sorry to hear about surgery and chemo, it is tough going but it does end and just take it day by day and grab a nice day out from time to time to help keep you going. I found it useful to keep a chemo diary to know good and bad days and also I found a chemo buddy which helped and we messaged each other. Someone similar to you is best, so if you are positive someone positive, if you are like me and a moaner who just wants sympathy a similar person and you can both sympathise and moan. There are bigger sites with more people on though the side effects they discuss can be terrifying and the forced positivity annoying so I dipped in and out. But a lot of side effects can be avoided or helped and there is a 24/7 chemo line to help. Dentists, likely private atm are well worth doing now and getting any work done and extra fluoride toothpaste as dental issues are common after chemo.

Thank you for the advice @Silkierabbit All these are really good suggestions and while I am away I will start thinking about putting support systems in place. At the moment I’m having to deal with things I was looking forward to which have now evaporated - mostly travel - and badly need to find something to replace them; but of course I’ve no idea how I will respond to chemo. Grabbing nice days out as you suggest is clearly the way forward.
Hadn’t realised a chemo buddy was a possibility and will certainly give that some thought.
I do feel fortunate to have found this community. I’m a little wary of other internet fora as (a) I’ve heard that there can be a kind of competitive suffering and (b) I know - I have known two! - that pretending to have cancer is a Thing.

I second the advice about planning some Nice Things during chemo. I found I really appreciated the small pleasures when I felt well enough. Everyone varies, but I managed a couple of small trips away overnight, some lunches with friends, plus local walks and nice things outside where I wasn't so worried about infection. Our local boutique cinema does weekend morning showings which are very sparsely attended and one of those with one of my daughters and a piece of cake was a nice (safe) treat too.

Ooh @dotty2 that sounds lovely. I must check what’s on.

@Florabritannica I had a relative who was very strange. She allegedly had her womb removed for cancer years ago. Then she told us she had breast cancer and was going for treatment in Liverpool with a famous American specialist but she never had a biopsy or surgery and never lost her hair. Eventually she developed genuine leukaemia and despite conventional treatment she died. She had several alleged past careers and businesses, had allegedly stood for the EU government and after she died we found out all sorts of other odd things about her. I think she had Münchausen’s syndrome and needed constant attention on her. She didn’t profit financially from her lies but got a lot of sympathy. I think people are say they have cancer either to scam people out of money or because they want attention. Personally I need neither. Just the company of the people I love.

ive come out without my hat on I’m so stressed about all my scans tomorrow. I feel like it’s gone down but moved slightly from my groin to my vulva. I can’t stop touching it in bed!!! I’m just emotional I took one of my little strays to be pts this morning they said liver cancer. It was very peaceful. That’s all we can hope for I think. Crumbs have you heard me?? I’m supposed to be optimistic and cheerful how can I snap out of this? I’ve just had my dressing changed. My appointment with my consultant isn’t for four weeks. What happens in between? Will I start the radiotherapy i consented for or do I wait til I’ve seen my consultant?

@EachandEveryone just breathe! You are frightening yourself. The scans will sort out what is happening. Things have gone well so far haven’t they? Try to stay in today and not catastrophise. Have you got a specialist nurse you can talk to? If not then the radiography team will listen to you tomorrow.

I just had a chat with my friendly oncologist. She wants to leave me off treatment another week until the blisters are healed as I’m still peeling worse than two weeks ago. Also I will start pyridoxine as that might help a bit. I would like to crack on with treatment but I have to listen to the experts. Good news is that now I will get an extra week off when I am in France next month as I can’t get back for bloods or drugs. Bonus! If she cuts me down to 6 cycles I will finish a bit sooner than planned. Fingers crossed. I’m quite cheerful despite being chair bound for my feet’s sake. Onward we go …

Good news from me, the biopsy on my vaginal cuff was negative. It's just "extreme vaginal atrophy" (DD: "What does that mean, shrivelled?!") I'm so relieved but also can't quite take it in yet, and wondering if the GP who told me got it wrong 😂. I had my scan a month ago, so the anxiety has been there for a while, hopefully I can let it go and not start worrying about something else!

@EachandEveryone there should be a radiotherapy therapist that you can meet with.