Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

Sending strong neutrophil vibes to @cannaecookrisotto I hope you get out today.

Get that scan over with @NonamelassI like the sound of the happy pills!

@cannaecookrisottoI’m sorry to hear you are still in hospital. Fingers crossed those neutrophils rise and rise. Has the infection improved? Presumably if you can kick the infection the neutrophils will rise. Sending support, chocolate and virtual hugs.

I really liked my hospital bed. I loved the control and the fact that the HCAs changed the sheets every day. I don’t get that service at home 😂

i had my iPad and ear buds and I watched movies and stuff on Netflix, but yes, it’s tedious. Fingers crossed they let you out tomorrow for your daughter’s show.

Your kids sound great @InthebasementYou do have to ride the stages. They aren’t linear or chronological unfortunately. Im glad you have a treatment plan and a way forward- that really helps. A tracking diary is an excellent idea. I wish I had done one from the start.

you certainly aren’t alone 💐🍰 keep posting please. Let us support you.

i agree that it’s easy to try and just carry on as though nothing has happened and pretend it’s all okay. It’s not okay. Some things are shit and sometimes I feel crap. I think I need to accept that and face my demons (and my festive munchies!)

It could be that your lymph nodes are enlarged because you are fighting a bug @Sbmpp but please get it checked out. DVT is not to be messed with. At least you are on blood thinners already.

Good news that your cancer is contained @watchadewin! what is the treatment plan now; do you have to have a mastectomy or are they suggesting a lumpectomy followed by chemo or radio? Are you sleeping a bit better now that you have confirmation and a treatment plan - I do hope so,

I have an “upper respiratory tract infection “ or a cold to you and I 😊 it’s impacting my breathing though so I’m back on sofa rest and paracetamol. We were supposed to be going to a fireworks event at DS’s school but the weather is absolutely awful, I feel rubbish and DS doesn’t want to go out in the storm (cue Christmas music). He’s suggesting a meal on our laps (I usually insist on meals at the table) and a movie. Listening to the storm outside I’m persuaded to agree.

Have a restful evening everyone, take care of yourselves x

@Ventress Thanks much. I received a message back from my oncologist and given my history I am encouraged to go to ER or UC. Ugh. That’s usually a seven hour wait.
@cannaecookrisotto Hope today’s the day you come home. It’s Christmas 🎄

Friday night in the ER doesn’t sound fun @Sbmppcan’t you get a fast pass through due to your immunocompromised status?

@Ventress heading off to ER now. For some reason it’s always seven hours there 🤷🏻‍♀️

@Inthebasement Salut ;) enchantée, j’espère que tu vas bien ?
Thanks 😉 I am actually a proper worrier. The first time I was diagnosed I was a quivering wreck !! A right pool of jelly on the floor !!
It’s just you get used to it with time and I have had many years where cancer hasn’t bothered me at all. I’d have been ecstatic if someone had told me that when I was 35 !! I suppose at this point it really is more like a chronic disease that raises its ( fecking ugly) head occasionally.My weak point is my family, I hate worrying them xx

@Ventress I’m a bit relieved cos spoke to the lovely secretary today and she said my information /biopsy has been reviewed and they don’t think it’s too urgent ( it’s a really brilliant hospital and I believe them)so no need for the urgent petscan slot ( phew !!!!) but she’ll organize it for me before the 7 th when they do that commitee thing and decide on treatment plans. I’ll take that as reassuring 😉

I think dinner on knees with son in front of TV while storm rages outside sounds like bliss . Hope your cold clears up quickly xx

Better to be safe than sorry!! Hope its not too long a wait xx

It’s nice to meet someone you bond with during a few hours while doing chemo. A sort of immediate friend even if you never see them again as their chemo times are different.
I always had shared double rooms with my last chemo and met some characters . One really lovely lady and I kissed each other goodbye (as the French do with friends) as we’d had such a great heart to heart 💕

Just the op sounds good ! @watchadewin , do you have an idea of when it will be? Sending best wishes xx

@Sbmpp good luck! Do you have a chemo card to show them? Forgive me, as I’m not sure if you’re UK based but here they have to see us within an hour if we’re on chemo and present with possible infection at the hospital.

@dancingwhilstfacingthemusic I’m in the USA. No chemo card, but went right back due to possibly 2nd dvt. I am in an area away from other pts due to the chemo and immunocompromised. I just had the us and awaiting results. I’ve been here way more than I’ve ever wanted. I used to be an er nurse too 😩. I’m thinking it’s karma.

That’s such a great and easy to apply idea. Îve never heard of that in France. Well done the NHS.

I had the weirdest night during the first wave of Covid when I got a fierce reaction to the filgrastim injections with my first round of FEC chemotherapy. I had a fever and severe chest pain so was sent to A and E. I was triaged into the Covid “ hot” side as I was febrile. I refused to enter the ward and they had to send for a senior nurse. She admitted the triage system hadn’t allowed for the immunocompromised and put me in a side ward while they tested me. Happily all the tests were normal and it was just the spicy bone marrow response causing pain like a swarm of bees in my chest.
The consultant told me later I had made them change their triage system so my bloody mindedness probably saved a few people!

@Sbmpp gah I hope you’re soon sorted and out.

@Nonamelass it’s such a small thing to carry - I’ve also put the details of my treatment on my phone emergency contact thingy. When I was in Paris a couple of times earlier this year, I showed my chemo card and letter from the consultant at the Louvre and other places. They accepted these as proof of not needing to wait in the very long lines (I was particularly tired at that point and also didn’t want to queue for ages in very crowded areas).

Crikey @TopOfTheCliff good for you for advocating for yourself. Yes, I agree with the swarm of bees comment. Glad that your speaking up for yourself had a positive impact onwards.

You lot really are a marvellous bunch ❤️

I’m home! They discharged me around 2pm with oral antibiotics, another 4 days worth of Filgrastim and instructions to go back if there’s any funny business. I hot hoofed it out of that unit like the clappers! The Christie were bloody great tbf, I was so well looked after, my oncologist came and assessed me in person each day and the nurses were lovely. But boy am I happy to be back in my own bed.

Was amazing seeing the girls, I came straight to mums where baby fatfat was, she crawled over, wanted up for a cuddle, sucked my nose then got distracted by the dog. Then my eldest came home from school and didn’t know that I was home. She walked through the door moaning about something or other then saw me sat there, she ran over, hugged me and burst into tears! Then I blooming cried as well. It really hit home the impact this is having on her. I’m worried she’s starting with some health anxieties as a result too. For example she’s got a mole next to her ear, just a small freckle basically and she keeps asking me if it’s normal. There’s been a few other things too. I might utilise the Mental Health part of my AXA cover and get her some sessions with someone, I just need to look into what’s best a bit more. She gets a lot of support at school and 1-1s with the pastoral lead each week but I’m not sure it’s enough.

I’ve had Filgrastim for the past 12 weeks, always taken a Loratadine daily. Religiously. Never had any bone pain. I’ve not taken Loratadine since Monday as I didn’t take them in. The bone pain I’m getting now is unspeakable! Currently in bed with a hot water bottle on my back, high on co-codamol 30/500 and it feels like when I was in labour with my eldest and she was back to back. My Oncologist said that there’s no evidence that Loratadine actually does anything but I now strongly disagree!

Spent the evening unpacking the kids stuff. They stayed at my mums for the week and you’d think they’d been gone for the whole month. I don’t know how they’ve managed to come home with tons more shit than they arrived with god help me.

…

Glad everyone seems to be doing ok(ish), sending hugs and I’ll catch up in the morning with a cup of tea ☕️.

I am home. No dvt. Dr thinks lymph nodes. Although I had an US I still have the thought that this feels just like the other one but I guess I just have to figure that in the midst of labs, chemo etc sometimes there’s a win 😍

Good for you @TopOfTheCliffI’m shocked they were going to put an immunocompromised person onto a covid ward. That’s insane. I hope you are proud that you effected that triage change.

My chemo card is known as the “Monopoly” card in our house, as in “do not pass go, do not collect £200”.

I’m really pleased you are home @cannaecookrisotto💐 enjoy your daughter’s performance this afternoon! Your mum is such a star. Using your phi to get dd1 some counselling sounds like a good idea. I wanted to do that for DS but he refused. Her school sound supportive too which is very helpful ❤️

@Sbmppgreat that it’s not DVT! You will now look like Carol Hathaway in my head now 😂 I used to love ER when it was on back in the day.

I still have a filthy cold which is affecting my breathing. I hope it shifts before Christmas because it’s really limiting me. It’s DS’ last day of term so DH has taken him to school and is then going into town to do his Christmas shopping. I feel a little adrift as it’s the first Friday for almost 4 months when I don’t have to go in for chemo (the hospital is opposite DS’ school). I have a half thought that one of the chemo team will ring and demand my presence soon!

@cannaecookrisotto so glad to hear you are home, its always lovely to be in your own bed.
I know what the filgrastrim pain is like, mine were like that the first time round but second time havent been as bad, but definitely nothing you can sleep through like I was told.....

hope thats an end to your adventures but I do not envy those injections I bloody hate them. Lovely to hear how your children are so pleased you are back bless them both.

Happy Friday everyone. Glad to hear @cannaecookrisotto is released and hopefully at the school play.

I've just returned from hospital with good news. Clear margin achieved after the 2nd attempt. Oncotype score low so no chemo.

Did some shopping for myself this morning snd managed to go a bit overboard. Croc slippers, garden sculptures, jo malone perfume and lunch.

My mongoo cream i ordered arrived and not too keen on smell. But it's probably good for me.

@FcukBreastCancer fantastic news, lovely to have some good news here, you deserve a treat or two......

@ventress hope you feel better soon - you dont need a cold to fill the space that you should be able to relax in.

so nice to not have chemo to go to, enjoy it - you deserve a break after enduring four months of it.

@cannaecookrisotto So happy you’re home and Merry Christmas 🎄 to all of you. I was so happy to hear you had your sheets changed daily while in the hospital. I was in for two weeks and they were changed twice!! Hopefully those wbcs will keep on kicking. I hope your older daughter will feel a bit better seeing you home. I remember times my mom was sick as I was growing up and it devastated me. I still remember the nightmares I had many years ago so love and hugs for her and all of you.

@Ventress Kick that cold and Merry Christmas 🎄.

Yay!!! That’s brilliant news 💕💕💕 so happy for you !