Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

@frostyfingers this Flippin cancer and treatment is just getting rude now. So sorry you have this to deal with too. Have they said when you get your Picc line in? They should give you a plain cover and a basic shower cover for it. You’ll also need to wrap your arm with clingfilm (wrap around 5 times) before putting the cover on. Don’t submerge it even with all that.

I’m going to have my post- chemo mini spa morning (well, 1/2 hour!). Gentle hair wash, gentle facial and lots of moisturising, candles going and woo music on.

My EC #2 is done. I was in the chair ready to get connected to cold cap / Picc line and the ward nurse was asking me lots of questions about whether I was ok. She looked concerned and fetched the pharmacist. I picked up on “the specialist has authorised the treatment”. Then she realised that she had read my AST and ALT the wrong way round - both are elevated. I’m really pleased to be taken good care of at every stage. It’s great not having the antihistamines with this treatment as I can stay awake and chat to DH. I’m in the chair for 3.5 hours, allowing for cold cap either side and the meds beforehand (for me this is steroids and ondansetron, I take aprepitant an hour before at home). Slept in chunks last night due to steroids so will have a nap today around my timetable of drugs.

2 left. Can’t believe it. 14 down. The days are getting lighter and wherever we are in our treatments there are better days ahead. Particular lots of love to those expecting a 10k who have been put on an ultramarathon. @BatshitCrazyWoman ive sent that to family and will send it to friends. I think my brother may use it as a basis for one of his sermons, so I hope it will have a wider spread in his community as well. He’s on the General Synod which gives him an opportunity to circulate it wider. His wife has annual checks as she has a high family risk of BC.

Hope the days are being as kind as possible to everyone.

Hey all - I had my first post chemo hair cut today. It’s still a bit of a mullet (I lost a lot of volume but no bald patches) hairdresser said it’s coming through really thick so that’s great. I also had the dentists who said the chemo has caused gum disease, so I’m pissed off about that.

Feeling a bit low this week, I think it’s the tamoxifen, anyone else taking it? I have an oncologist appointment in two weeks so might discuss it then with them. I don’t want to feel depressed for 5 years. Grrrr. It feels like it never ends.

Just a reminder about the cancer charity - SomethingToLookForwardTo who sen me a message to say they had gifts to allocate to cancer patients and links are here. If interested would apply straightaway as these may go quickly.
Here are some gifts and experiences in Cambridge for February that are yet to be allocated:

Valentines Punt Tour for 2, Cambridge 13th-16th (February) – Something To Look Forward
The Mill – £50 Meal for 2, Cambridge (February) – Something To Look Forward
The Waterman , Overnight stay for 2, Cambridge (February) – Something To Look Forward
The Petersfield – £50 Meal for 2 (February) – Something To Look Forward
Cambridge Brew House – £50 Meal for 2 (February) – Something To Look Forward
Oxygen Therapy, Cambridge (February) – Something To Look Forward
Infrared Sauna, Cambridge (February) – Something To Look Forward

And a couple for March that need to be booked during Feb:

Bed & Breakfast for 2, The Hyatt, Edington (March) – Something To Look Forward
Bed and Breakfast for 2, The Hyatt, Edington (March) – Something To Look Forward
The Waterman, Cambridge, £50 Meal for 2 (February) – Something To Look Forward

Valentines Punt Tour for 2, Cambridge 13th-16th (February)
It is with huge thanks to Scudamore's Punting Cambridge we are offering a 30 minute private Valentines punt tour for two people. This special experience includes a complimentary glass of prosecco upon arrival, a beautiful long stemmed rose and a keeps...
https://somethingtolookforwardto.org.uk/gifts/additional/valentines-punt-tour-for-2-cambridge-13th-16th-february/

Other things on the website as well. I had a lovely week in Cornwall through them during my chemo.

I’ve applied to 4 things from something to look forward to and I get turned down every time. I thought maybe the first time my evidence wasn’t good enough so I got a clearer letter- but still turned down. They apparently don’t have time to tell me why so I’ve given up now.

Started abemaciclib today. Can’t spell it, can only just remember how to say it. Very down about needing to take it.

they said they couldn’t justify radiotherapy on a micrometasis of 1.9mm or a tumour margin of 0.5mm but I can’t help but think I’d rather have done more chemo or radio instead of 5 years ovarian supression, 5 yesrs letrozole then 5 years tamoxifen, 3 years ibandronic acid and 2 years abemaciclib.

my hair is still really thin.

I went to a work conference and everyone said I looked well/good which I’m pleased at because it shows makeup works but I’ve never felt so fake.

@aaodirjjd
I start abemaclicib in two weeks. My Onco gets tongue tied with it! Worried about it already. I do know we're lucky drugs are being developed all the time and I know I should be grateful but that's the reasoned side of me. The panicked patient side of me is scared of all these things. Hope you go on alright...x

@dancingwhilstfacingthemusic thanks for the question - I think round 1 of EC was quite bad because I had some symptoms I was not ready for - in particular heartburn which seemed to cause lots of pain in my throat. I got a drug for that, and took it daily on this round so my heartburn hasn't got as bad.
But in other ways this round is worse. I have a cold, and am on antibiotics for it (I guess an infection that has/might develop) as I have a temperature. We're hoping that solves it - now seems like a terrible time to need to go into hospital!

@dancingwhilstfacingthemusic I have been given a day but not time for the PICC line so chasing that now. This blooming cancer admin takes up so much time. I've got to check that the GP has the instructions re my blood thinners & bisphosphanate prescriptions as well.

@BatshitCrazyWoman I got my nap - if I don't have one a day I'm useless

@breastcancerpanic Things sound rough for you at the moment, fingers crossed you feel better soon

@Littlecaf @aodirjjd I'm sorry you're feeling low, it's relentless, I hope things improve over the weekend.

I'm off for lunch with a friend, yay - going to a garden centre so might buy some flowery stuff to cheer me up.

@frostyfingers I hope you're enjoying the garden centre. I did that with a friend yesterday, was lovely to get out. I now realise I sound like an old lady 😂 But I love a garden centre!

Had my oncologist appointment this morning - we were talking about the likelihood of me having to switch from Phesgo to Kadcyla once they have the findings after surgery (more likely than not. Yay, more chemo! Although apparently it's just a little bit, and not too bad). We also talked about residual cancer burden, Tamoxifen, radiotherapy and how I need to start eating. We covered a lot. I've had a good response to chemo so that's good. And then I came home and managed to eat almost an entire sandwich, which I haven't done for five months! Progress.

Good to hear of progress @BatshitCrazyWoman and fab to hear of a good response to chemo.

@frostyfingers there is so much bloomin admin and random appointments that need attending with loads of other stuff to rearrange.

@aodirjjd @Littlecaf hoping for some respite somehow for you guys.

I too have been doing the old lady garden centre things. Found some hardened off garden bulbs that are coming up and have put a few pots of them where I can see them from the window. Hopefully the flowers will provide some cheer as they emerge. We had chickens until a couple of months ago when my last elderly girl died. They used to mow off the new flowers as they emerged so it’ll be interesting to see how the garden grows this year.

I’m on chemo day 3 and still on steroids / high strength anti nausea. I’ve been given strict instructions to rest better this time to avoid such a bad crash days 4-7. Let’s see if it helps things. I’ve still done a couple of sensible walks each day as I know that helps, just not so much in the house. It can wait.

@frostyfingers & @dancingwhilstfacingthemusic thank you for your thoughts.

Spoke with breast care nurse re tamoxifen and currently sitting here in the chemo ward typing this after my Phesgo. My nurse today was lovely as usual (they are always so positive!) so feeling a bit better about everything. The BCN also talked me through tamoxifen and said to give it six weeks, if it’s too much then I can stop. I’d rather it wasn’t too much so fingers crossed all these side effects calm down. She also confirmed what I did know but hadn’t said out loud, that my cancer was triple positive (but only just). Made me cry a bit. But it’s gone now so all this other treatment is preventative. Still don’t want the fucker to come back though.

@BatshitCrazyWoman good luck and hopefully you won’t need to switch. Sending positive vibes x

Hi @aodirjjd & @somewhereonthe517 i started abemaciclib yesterday as well (I can’t spell it either).
My neighbour who used to work for a pharmaceutical company in the breast cancer area, was well impressed that I was getting it as it hasn’t been approved that long.
I’m trying to take the view that I’ll see how it goes (and pray that one of the side effects I dodge is the hair loss one as it’s coming in really nicely after chemo).
My tumour was pretty big (7.2 cm) and it was in 2 nodes, so I know I’m at high risk of recurrence and if this drug keeps it from coming back and having to go back through the chemo shitshow im all for it.

Mine was only in one lymph node (although they only removed two) and it was only a micrometasis so I think I was a borderline case for abemaclcib- but I’m quite young and it was grade 3 so…

Ive only been on it since Thursday. So far I feel quite sick after I’ve taken it but have found that it gets better when I eat so I think I’ll have it with food going forward. I’ve not had any other side effects yet.

im going away to a spa thing I booked ages ago the week after next so I really hope it doesn’t cause tummy issues and ruin it!

im actually having more issues with the letrozole causing me to be really painfully stiff if I dare sit sit for more than 30 minutes which is totally shit. I’m waking up in a lot of pain. Ibuprofen was helping but doesn’t seem to be working as well anymore.

@aodirjjd that does sounds properly shit.
my 2nd node was micro whatsits. First one fully gone.
I’ll start Letrozole in 2 weeks. Had my first zoladex 2 weeks ago and have noticed my hip flexors are really stiff and I virtually creak if I sit on the floor for any length of time. I imagine that will get much worse.

@Nomorebear I had zoladex at the same time as my first chemo so I’ve been able to seperate whos zoladex from what’s letrozole. I must say menopause at the same time as chemo was a bit hardcore but the oncologist said it was best to shut down my ovaries asap and in my head I thought 5 years of zoladex will be over sooner if I start it sooner but I’m not sure anyone has counted it out as princely as that anyway.

@aaodirjjd and @nomorebear thankyou for sharing your experiences so far on abemaciclib. Right from my first meeting with my oncologist she always mentions the cost of the drug and how they have to apply for funding so I am grateful to get it but equally sad I qualify if you see what I mean. I will not jib at taking it if this is giving me extra protection from recurrence and so much research goes into it... I just hope I can tolerate it for 2 years x

I’m glad you could read through all those typos haha. I totally understand what you mean about being grateful and resentful at same time.

i was just thinking earlier than I need to remember sometimes that everyone involved in my care has my best interests at heart even if they make mistakes in admin or communication. It’s not some sick endurance test even if it feels like that sometimes!

Hello all. Hope you’re all ok.

we are on our holiday. Much needed. Teneriffe is 22 degrees. I’ve been super sun safe. Have eaten well. And have relaxed.

currently sat by pool half watching the kids splash.

the warmth has done wonders for me. I swear my hair has grown (still in the baby duckling fuzzy hair stage).

I was totally self conscious the first day here. Not very visible eyebrows, fuzzy short hair. Port still in. Weight gain.

but once the kids persuaded me to get in the pool and play mermaids all the self conscious was gone.

we’ve been to the water park (Siam park) and had an absolute blast and had a wonderful time at the zoo/aquarium yesterday (loro parque). I even relented against my morals and went to see the orca show (they were bred in captivity and cannot be released so I felt a bit better about it). The show was more “look at how amazing these creatures are” and not “look what we can make them do” if that makes sense.

hotel 10/10 recommended.

Todays view

I"be been thinking about you and your holiday, @ememem84 . Glad you're having a fabulous time!

Oh wow @ememem84 that’s awesome. I was wondering how you were doing.

Just for general info re insurance, I’m waiting to be told whether I can go for a weekend minibreak timed for a very special one off occasion but just before my final chemo. Obviously, it’s subject to consultant approval - she had said at the start of the chemo that if I was well and bloods are ok she would be happy about it. It falls between my 3rd and 4th ECs, currently falling on my better week (I’m so aware things could change 🙄).

I spoke to “insurewith” yesterday and gave a full history. They are happy to insure me during chemo as long as there is consultant agreement and I have quotes for different levels of cover ranging from £21.85 to £59 for four nights in mainland Europe. I have them a call to confirm a few things and the chap on the phone was lovely/ very helpful.

For reference I used justtravelcover.com for my insurance.

@ememem84 looks and sounds lovely!! It is fecking freezing here even in woolly socks. I keep trying to tuck my feet under the dog. He is having non of it!
Have a paddle for us all! Keep enjoying x

@ememem84 bring back some sunshine please!

I’ve had to pop in to have another look at the gorgeous sunshine. What a great time to be away!
Thanks for the other insurance recommendation too.

Bear with me here. I think it’s a “me” thing as my cancer is ER+ and I was on hrt without proper reviews for a long time. My surgeon told me the hrt was “feeding the cancer”. I am probably over sensitive about it but have found a current thread about going on hrt before menopause to be very triggering, as people blithely say that they will keep on it no matter and in spite of what they persist as small risks. People must do what they need to do re hrt and it’s a lifesaver in many ways, but does need careful monitoring. I guess if someone had enlightened me about the true risks my situation might not have happened or be at the extent of needing chemo. I won’t know but on these threads it’s like listening to the unaware person I was but now with awful hindsight. I’ll explore this more after chemo as I intend to access MH support to help to move forwards (Maggie’s offer a series of sessions).

I was also on HRT before diagnosis @dancingwhilstfacingthemusic My cancer is triple positive. I'm avoiding the Menopause board completely now. I'll never know if HRT 'caused' my cancer. But it can't have helped. I had only been on it for three and a half years, and I did have reviews. Who knows 🤷🏻‍♀️