Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

@Ventress Thanks for the suggestions:) I’ll look them up. I really love police drama (no serial killers). I’ve watched quite a few “everyday life in Australia “(Australia scares me half to death. They have killer snakes, spiders, sea life, and the sun). (Always wanted to go there too. Don’t think I could handle a 24hr jet ride). I’ve seen lots of docs about life in UK too. There is so much history in England too:).
Today’s my last granyx shot. It has been rough this chemo. I wake up nauseous from the chemo then have the pain from the shots.

@Nonamelass
when the oncologist said he was asking for a petscan I wimpishly said oh no do I have to? What if they find something else??

this made me laugh, its exactly how I feel!

I went to Home Sense yesterday afternoon- really worth going to!

We have no bitey insects, no snakes or spiders on the uk, so you are fine @Sbmpp. Australia is an amazing place. I only went as a tourist many years ago but it’s the only place I’ve been where I thought I could live 😊

I still think knowing is better than not knowing @Nonamelass. I do totally understand your position though. I trembled and shook through my bone density scan - it was claustrophobic and horrible and nearly an hour long. But I got through it in the end and I am stupidly proud of myself for doing it (I’m not looking forward to a repeat though!) and I got very bad news from that (unfortunately) but I am glad I did it because at least I know. If that makes sense.

Off to the parents today. Thank goodness my sister and brother in law will be there, Wish me luck. We don’t really get on very well but I feel obliged. They don’t know my prognosis either which is difficult.

I would suggest Agatha Christie then @Sbmpp. She was a nurse in ww2 with a speciality in poisons so does have a tendency to lean this way but the dramas are very good - David Suchet as Poirot and Joan hickson (other miss marple’s are available ) are both excellent and really easy to watch. I think they would both be on Britbox.

Hi everyone how are you all? @Ventress did you survive the visit to the parents ? @cantbelieveIamhere @Sbmpp@Bangersndmash how is the treatment going?
Got the confirmation for double mastectomy gulp!! Felt teary for a bit but now just want to get on with it. Op is next week I feel like it’s taken forever.
Sending hugs to everyone xxx

@Nonamelass Sending hugs and love your way. Cancer’s such a b*h. The surgeries sometimes needed to cure it remind me of something out of Frankenstein’s monster. You will be in my heart ♥️. I have an appt. with oncologist today then Petscan tomorrow. Today I have to be carb free for the ps. Does anyone have ideas of things to eat besides chicken? I don’t really like meat and last few times have had plain chicken a few times and boy was I feeling lousy. I’m starting to feel a bit better after last week’s chemo. Nursing strike is ongoing. I’ll be having chemo again next Wednesday. just don’t know where. Hope everyone is ok.

I had my first immunotherapy treatment yesterday- all fine so far!

@Nonamelass i was told I wasn’t allowed chemo yesterday as I was too poorly. I was expecting them to say it so didn’t come as much of a shock. I’m booked for next week, hopefully, if I’m better.

Ive had an eventful 24 hrs to say the least. Went to chemo, got turned away, told I needed an urgent echocardiogram as I keep getting pains in my chest. Then went home, did work for a few hours, checked my temp and it was really high. Chemo unit said I needed to go to A&E as at risk of sepsis.

Waited in A&E for hours, given IV anti biotics. Bloods came back as not sepsis and all vitals were stable so sent home at midnight. Then back at hospital this morning had echo… all was OK, went home.

Just keep saying WHAT NEXT?! There’s always bloody something. They think the pains are stress related, makes sense.

@Nonamelass also, that’s exciting you’ve got your surgery date. I’m going for DM. Got my fingers crossed for you everything goes well.

@Sbmpp oh good luck for tomorrow ! Can you have eggs or cheese? An omelette with some smoked salmon and cream cheese? Or scrambled eggs? No carbs is hard if u don’t like meat and don’t feel well. Veggie soup maybe? Rooting for you 💕
@Onewildandpreciouslife yay on the immunotherapy hopefully that continues and the wonder drug will do it’s work for you. Rooting for you 💕
@Bangersndmash oh flipping heck what a rollercoaster this cancer ride is and not in a good way. It’s never ending is it ? And then when treatments are over the whirlwind suddenly comes to an abrupt stop and you’re left wondering what happened. You’ll see its quite weird and hard to imagine when you’re in the middle of it all. They thought I had a blood clot cos my temp was high and heart rate too ( I swear it was cos I was eating do many extra strong mints to cope with that taste you get but they said no) so I was taken down to hozzie basement at 11pm for a scan or something… false alert !! I had a transfusion as well cos of low bloods. Honestly !! Then all of a sudden it was all over and apart from looking like a bald potato everything went back to normal. Have you got anything you can take when you’re anxious? Maybe stay out of indoor play areas with rhe kids if your bloods are low? Or wear a 😷. Poor you💕 it makes me think back to me at your age and it’s so sodding unfair but you are you g and your body will cope with the treatments. I’m rooting for you with all my heart .

Ps @Bangersndmash yes I had the echocardiogram too.. that’s what led to the freaky late night scan…
Yeah I understand why you want a double mastectomy, and you are young enough to have reconstruction I feel like at 60 next birthday its a big op to do but it would have been easier in my 30s

I am so stupid 🤦🏼‍♀️ my hospital had to reschedule port fitting to today but I didn’t think and took apixaban yesterday morning, so now I need to reschedule AGAIN…how annoying is that?

Good luck @Bangersndmashand @Nonamelass
❤️

(I have read and will reply later - I’ve been madly busy the last few days but wanted to say good luck!)

@Bangersndmash @Nonamelass yes good luck from me too, I hope it all goes smoothly, no delays and swift recovery.

@Bangersndmash you are having far too much drama in your treatment a bit like mine at the beginning, I hope it all calms down for you.

@Ventress dont forget to seize the day, not too much work work work

chemo number 5 on monday, then one more to go before endless phesgo injections etc

So sorry all, that was meant to say HOPING for not going for. I’m 2/3 months away from surgery yet. Hoping for DM.

@Nonamelass i completely understand what you mean, normally I would avoid soft play like the plague with all the germs but the one I go to is actually really really quiet in the week, I’m never usually near other kids and quite clean!

have you got to do any prep for your surgery next week? How are you feeling? Nervous? Excited? Want to get it all over with? All of the above? 🤣

@cantbelieveIamhere it did feel like drama after drama on Monday. I’m actually feeling so much better today and really hoping I can have my chemo Monday!

Sending a big virtual hug or a cup coffee to everyone today on world cancer day.

i hope the operation goes well this week @Nonamelass💐 I think you will feel better post-op

i hope chemo went well today @Sbmppand the pet scan goes well tomorrow. I agree with @Nonamelass that an omelet sound like a good idea. Avoid chicken entirely.

I’m sorry you weren’t up to chemo on Monday @BangersndmashI’m glad the ecg was okay but sounds like you’ve been through the mill this week - I hope you are feeling a bit better now. And hopefully chemo will be on for Monday 🤞

I’d totally forgotten that it is World Cancer Day today. I do hope you have all had good days, whatever you have been up to !

I’m glad the immunotherapy went well for you @Onewildandpreciouslifehow are you feeling now?

Do you have to wait a week @samlovesdilysto reschedule the port fitting? That seems harsh.

Thank you @cantbelieveIamhereit has been busy at work and the theatre. I’ve also been finalising my will which has resulted in a couple of trips to our next town. I’ve also had three hospital trips this week. Which has been okay but the Zoledronic has really knocked me out. Or perhaps it’s everything else that has knocked me for six!?

I hope that your chemo number 5 goes well @cantbelieveIamhere. I will be thinking of you on Monday 💐

It’s rescheduled to next week, which is ok except DH will need to take another day off work. They are very good but I feel eventually will fade…
Feeling a bit overwhelmed with all the world cancer day stuff tbh, last year I was in depths of chemo but had a plan and was expecting to be clear by summer…which I was I guess, just by November I’m deeper than ever and no end in sight…just a bit of a bleurgh day…
hope everyone else has done well, on a more positive note it was light past 5pm and my oncologist said I can book a holiday for the summer!!!! Off to browse cruises…!!

A cruise sounds great @samlovesdilys let us know what you book please? I have got a few weekends in the uk planned but I haven’t been brave enough to book a foreign trip yet.

Hopefully your husbands company will keep letting him have the time he needs.

what is your plan for spring/summer this year?

I missed World Cancer Day - how did I do that?! Oh well, lovely SiL is visiting this weekend and we are going to Sunday lunch so can raise a glass to WCD on Sunday.

It doesn't seem like it's been all that long since I posted on this thread and yet how it has moved along, I know I shouldn't be surprised when there are new people but one day I hope cancer diagnosis is a little like the supermarket queue - lots of people everywhere, you pick the wrong queue to stand in and not only does it go down everywhere quickly but no-one else joins the queue behind you....if it could all just disappear and go back to calm that would be lovely.

I had a check with my ENT consultant, my Macmillan nurse said not much happens at this appointment, I'll get my post treatment scan dates and then that's that other than regular scans.
Got to my appointment, only to find a camera shoved down my nose a visual ''lcant see anything, all good' and no scan date .... Apparently no point yet
I am 14 weeks post treatment ending, no scan arranged and instead i must go back 25th March to see the same ent guy, even if he scans on that day it's 21 weeks post treatment, it just doesn't seem right when it spread to my lymph nodes.

I hate that I'm supposed to trust the doctors
Everything I said yesterday, every side effect was just 'yes that's normal' I don't want normal I want bloody answers on how to fix not just put up with it.
I feel like I'm right back at the start just waiting to find out

@ForestFlowerFairy that sounds annoying, I understand your frustrations, all the symptoms we have they say let us know.
You let them know and they say, yes that happens.

You are right to feel fed up I am sorry.

I am waiting for genetic profiling biopsy results from my eye tumour. Favourable profile will mean I should be almost home and dry as metastatic risk will be really low - unfavourable class 2 is a much higher risk of liver mets which with from this specific primary site have no treatment options.

Resul will be available in 2-4 weeks - at my post surgery follow up appointment the Dr suggested that she share these with me in my post radiation treatment follow up appointment in 5 months time. I asked could I know earlier so she said she would book an appointment for 8 weeks time. Would it be rude to ask for them to be communicated by letter or via my GP as soon as they can?

Hi everyone gosh lots to read.
@ForestFlowerFairy it is like a supermarket queue that just fills up again. Re your last appointment I understand that it doesn’t feel right. I don’t know what the answer is , its all so inhumane sometimes. It’s not really anyone’s fault I suppose..its the system probably but it sucks it really does.
@Connemaraa no I absolutely font think it would be rude to ask for your results through the GP. 5 months or even 8 weeks is a torturous wait when you lnow they have the results. I personally wouldn’t want to read them by myself in a letter though. I would totally spiral. I cant even look at blood test results these day.
@samlovesdilys the cruise sounds a great idea and something lovely to look forward to ( and buy clothes for)
@Bangersndmash are you feeling better? the soft play sounds sensible and safe. A coffee would be lovely!! I’ll junp on tbe Eurostar and join you 😅
@ventress hope you aren’t working too hard !! and @cantbelieveIamhere and @Sbmpp @Onewildandpreciouslife hope treatments are going ok

I am quietly loosing the plot a bit I feel like my strength is draining away. I’m touch wood hopeful that this will just be another bump in my particular road but I feel weary. Like everyone at my age there have been worries on top of cancer in my life, the last really big one being my beautiful mum having dementia and I am tired I think. I just need to somehow summon my mojo to do this next bit. I know things could be so much worse.. people go through much worse but I’m feeling jaded and tired. The waiting for this op has just been soooo long.

Bigs hugs everyone xx

@Nonamelass Thanks for all the positive thoughts. What day is your surgery? I’m sending positive thoughts right back and am going to put your name on the prayer list at Church. I’m debating on whether or not to use your name as I know it 😝, or to include everyone (mumsccancer?). In any case, hang tough, ask for pain meds (well I would anyway), I’ll be thinking about you.

Ps @Ventress haven’t heard of homesense I will look out for it next time Îm ‘home’ in the UK. I used to love a bit of home bargain but last time I went it wasn’t as good. I need to come over and buy some tea ( as well as see family of course) French tea bags are a bit rubbish. I have to use two 😉

@Sbmpp Its next Thursday. Yes I will take all pain meds ! Thankyou so much for your prayers I like the idea of your list in a church across the Atlantic it’s lovely xxx