Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Thanks Help I hope you get some lovely times with your adult children and grandchildren. I really would not worry about what others manage, and when you see snippets of others lives it can be misleading and Dame Deborah was just in her 30s. I have had times during chemo when I have say been walking round an island or at a garden party and as I kept short hair people who dont know me assume I normally look like that and also they dont see the other days inbetween where I am in bed. Just do whatever gets you through.

Not sure with vaccines, I am late 40s and had 3 now and been offered a 4th but not doing it atm, 3rd in March and wanted to finish chemo first now done but Cornwall next and also mainly isolate. I think its more about gaps from last one, I suspect it would be a 5th for some.

I did not feel esp tired pre chemo but it is quite common to feel that, can be stress, your body sends itself to sleep, as well as medical causes. They do loads of bloods for chemo. I was more insomnia.

Can I join? I've just had an endometrial cancer diagnosis and feeling very overwhelmed and lost right now. I have to have a ct scan soon to find out more information and in the meantime o have been put on high dose hormones to try and control things.
I've been offered two options

1. a full hysterectomy
2. 3 month trial on high dose hormones to try and reverse the current situation to potentially buy me time to have a family if I want to. I will need a hysterectomy in the long run.

So sorry to hear your news Dobby That must be so hard without children yet. Very difficult decision to make. The CT will give a lot more information and may make the way forward clearer, hoping its clear of anything else for you and caught early. Sending love and hugs. I have a different cancer but did do IVF so know about that if that is an option. I would tend to push back on oncologist and ask what they recommend.

Sorry to hear your news Dotty, such a very stressful time.

I’m in a really foul mood today. Not sure why. I’m 17 days post debulking so maybe it’s the hormones plummeting me into menopause, I don’t know. I’m just so fed up of having no answers. I’m terrified for my results call next week. The surgeon said my ovarian tumours were very unusual looking. I’ve spent hours today googling and found nothing that looks like the pictures I’ve been given. I sent them to a pathologist friend of mine who also came back saying they’re really odd looking and she wouldn’t like to say more as it’d only be speculation which is obviously fair enough.

I hate this. I hate not knowing. I hate the stress and fear and worry that never stops. That is all.

Oops, Dobby not Dobby! I’m fortunate to have completed my family already, I have a lot of empathy for your situation.

Oh my god I give up. Sorry about the names being wrong again. Today can piss off.

I’ll post properly tomorrow from my computer but I could have worked through some of my chemo. @Upyouranty I also used to be a SW on a CP team, left and retrained to be an accountant though because I hated having to say no to really vulnerable families. Now I say no to other departments and don’t lie awake at night thinking about it.

@Dobbysgotthesocks I’d try the hormones, you’ve got nothing to lose if the final outcome is the same.

It’s too tough to respond to everyone when I’m on my iPad but I had Cisplatin chemo for my vaginal cancer weekly and had no problems at all. I was very tired but I was also having daily radiotherapy for 5 weeks which was causing it.
I had 4 cycles of FEC for my breast cancer and I was absolutely fine. I was out for dinner on the day of chemo and taking my DD to the skate park next day. Be sensible and make sure you always have access to a seat - even if you take your own!
4 rounds of docetaxol were tougher, I had bone pain for the first two rounds before my dose was reduced. Never be afraid to ask for a dose reduction if you have side effects. I was fiercely independent all the way through and even drove myself to and from my last chemo.
However because of my work’s income protection scheme, I wasn’t allowed to work, I did go in and do bits on the sly but a project they needed doing was put on hold. I returned in April on a phased return and started radiotherapy for 20 sessions 2 weeks after I returned. I was able to fit work round it and they have been awesome.
Next week is my first full week at work and I have a few weeks to trial that before it becomes set in stone.

Assuming the CT scan is ok I think I probably will give the hormones a shot. The consultant actually prescribed them for me to take straight away. So I started them last night.

@thereisonlyoneofme I got my fourth in I think March or early April, and was told at that time I was now brought into line with the CEV recommendations and my booster wouldn't be until October time or so. I've also been getting calls from the GP or the NHS or someone about getting my 4th shot and its like can you not read my damn record? IVE HAD IT ALREADY. The difference is that my 4th was delivered through my hospital and not my GP practice/national booking system, so Im guessing it wasn't updated.

So yes, if you've had 4 you are in the clear until autumn!

I have my 5th booster next weekend. I did see a local news programme that has confused me but I guess if it was offered i must be eligible.
I think with work you need to think about the considerable mental strain that treatment brings . That alone would of made it impossible for me to do my job (psychiatric nursing). I think we are justified in saying 'at this time I have to be number 1 priority ' x

I had a letter about 5th booster this week.
I’m waiting until I’ve had the blood test to see if tamoxifen is having any effect then getting it; it seems to be surging at the moment.

Still confused about the jab given your experiences Herbal and MrsWooster !
I think Ill rebook and turn up and see what they say on the door !

Start radiotherapy on Monday. DD2 (17) tested positive for Covid today. 🤞🏻🤞🏻I avoid it. I hate how this has made me so selfish.

Sending love great

Hope you can avoid covid Podge I do have a feeling they can work around it for radio and you can get anti virals as well as long as you notify them quickly. I have no idea why you think you are selfish, you are totally the opposite and doing everything you can with cancer and losing your DH to cure your cancer and look after your kids. You are amazing and don't ever doubt that.

Mainly I lurk here, just finished radiotherapy- and @Silkierabbit is correct @Podgedodge I was told by hosp radio can be done while covid positive although hope your ds isn’t v poorly and you avoid it.
good wishes to all.

Aw, thank you @Silkierabbit and @thesandwich , I’m sure everything has a work around these days, just felt a bit of ‘OMG what next’.
I feel selfish, because my first thought was how will this affect me, not poor DD.
I just want my life back, but believe me, I know that however much my life has changed and will go on changing, I am really lucky to have one.

@Podgedodge you poor thing, it's just another thing when you already have and have had so much going on. I can relate to your feelings as I was the same a couple of months ago. DD26's bf stays here every weekend and when he got home on the Sunday evening, he texted DD to say his DM had just tested positive. He had been with her just two days previously on the Friday. My first thought was me catching it and having to come off my chemotherapy tablets, not any consideration for DD, her bf (whom I'm really fond of) or his DM. I'm really embarrassed about it now, but, same as you, I just don't want this to be my life. Really hoping you can avoid it .

@Runningwithoutstopping and anyone else who claims ESA please, do you know what happens when the review is due and if it is easy to do? Mine is due this month and so far I haven't heard anything.

@Fantasea 🌷🌷

I am due to have vaccine no. 5. I'll book it for 2 weeks time after my monthly blood test so it doesn't affect anything.

A member of one of the Ovarian cancer fb groups posted this helpful graphic which explains which groups are entitled to boosters and when.

twointhemorning thats really helpful thanks. Ill be getting my 5th then

Im needing a kick up the bum today. Been really down since I found out a fellow chemo buddy has been told theres nothing more they can do . He and I have been on parallel paths and cant stop thinking about my own prognosis now.
I know its not a good idea to dwell but I would be a lot more resigned if I knew I had control over my own exit (sorry if this upsets anyone )

Hi from Top in Swansea Marina watching the Air Show. The trip is almost over now but we still have Lands End to negotiate in a few days time. I’m having a wonderful time and don’t really want to go home! @Silkierabbit I should be in Padstow then Newlyn in a few days time so look out for Hullabaloo if you are nearby.. Enjoy your holiday it sounds exhausting!

@thereisonlyoneofme I’ve had five doses of Covid vaccine. If you were offered a third dose before your booster then you would be eligible for another booster.

@Upyouranty I was senior partner in a GP surgery when I was diagnosed during lockdown. I thought I was indispensable. My surgeon told me I had to stop work immediately and would be off for a year at least. It was a shock but she was right! My brain turned to mush during chemotherapy. Have you got any critical illness cover for the mortgage? Also be kind to yourself you are still in shock, this whole situation takes a bit of getting used to. It will get easier once you know what the plan will be.

Sending best wishes to all waiting for tests, results of tests, having treatment or recovering from treatment or even just lurking about! The whole thing is a shit show and no mistake.
Top xx

@TopOfTheCliff i am so jealous you’re there! We always go but can’t this year as I’m 2 weeks post surgery. We’ve just parked up by the RAF base in St Athan to see the army plane take off on its way to the show!

My husband informs me what I have cavalierly referred to as “the army plane” is a Lancaster Bomber 😂