Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

I have managed to have a shower and feel a little bit better. I'm reading a lot, and watching lots of TV, and knowing that it will pass.

Just had a gorgeous bunch of flowers delivered from work, which made me cry, so still a bit labile 😬

KIND. Be v kind to yourself. Something women are not always v good at

@grannygoggles
I read your words of wisdom and I love what you share. I am meeting my sister in law for a coffee and walk tomorrow as I feel a bit more human this week.. treatment again next week. My Dsisinlaw is very understanding and always says she is okay if I cancel short notice. Some people just get it don't they?! ...And I am trying to read more. I find that better for my mind rather than doom scrolling!! Slowly the days creep on. KBO indeed!!

As ever, @GrannyGoggles , bloody brilliant. Thank you. Did you find that you could socialise, go out, go into cafes and restaurants? Sorry if you’ve already said this but I don’t know how small my life is going to be compared to the big life that’s on pause.
I should be flying to Greece tomorrow but instead I’m having my beautiful long hair cut off - because it’ll make life easier through this and it will grow again.

@BatshitCrazyWoman go steady, sounds like you’ve had some nice nurturing things.

@dancingwhilstfacingthemusic I'm not @GrannyGoggles , but on my good days, I can go out for breakfast, or a (very light) lunch (don't have much of an appetite). I hit a wall of tiredness at about 3 pm, so after that I'm 'resting' . This is on EC, which is known to be tough.

Thank you @GrannyGoggles for your wisdom.

I’m the same. I’ve split my treatment up. So phase one is chemo. Phase 2 surgery. Phase 3 radiation.

im in phase one a at the moment - EC chemo. And have done 3/4. Ticking them off a chart.

then phase one b -paclitaxil. 12 of these (or maybe 10). My oncologist has said he likes to go with 12 because the standard is 12. But he’s also said that it’s usually 10 that people go with. It’s also psychological knowing that you initially need 12 but only get 10. Worse if you are told you need 10 then need more psychologically.

Dancing I did go to restaurants, cafes etc, but like Bats was tired and did not have a big appetite. I didn’t go to theatre, cinema or crowded galleries and limited my use of public transport, avoiding packed tubes for example. Did have short trips for a night or two not very far from home.

Life certainly got a lot smaller, I tried to focus on what I could do, lots of time in the garden, a LOT of internet shopping, but resentfully, sulkily missed going abroad. Very sorry to hear you’re missing out on your Greece holiday. And even sorrier to hear that it’s swapped out for an unwanted haircut.

Yesterday I read an interview with Charlotte Wood (shortlisted Booker Prize author) who was treated for cancer when writing her book. She used a wonderful analogy, likening having cancer to a rip tide, taking her away from her life, she could see everyone on the shore, but had to surrender to the water. The rip then brought her back but not to the same place. You’re being pulled along by the rip. I'm waving to you from my new place on the shore.

The rip tide analogy is a good one.

I'm also enjoying internet shopping! It's like getting little presents 😍

The riptide is good. We do have to go with it as we can’t fight it. I think the Covid lockdown experience helped to prepare me a lot for this as well.

Hair is cut - my hairdresser was amazing and opened up early. She was positive and super lovely whilst I tried not to blub and did a great job for me. My son says I look like Hilary Clinton 🙄. I’m delighted to have lengths of 14” to send to little princess trust - they need lengths of over 11” so some good has come of this. My ears and neck feel chilly though!

If I might ask, how have people found changes in clothing size? Again, an individual thing but I wonder how typical it is to gain a few sizes (internet shopping for wellness boosting!).

I’ve got my chemo in two phases, 12x pax and 4x ec. I’ve had what should have been one op and was three (so extra!). Today’s job is to have a small post-op clear out of my bedroom and to put together a small “just in case” bag if I need to whizz up to hospital to have things checked. I’m better if I’m prepared. I’ve also started applying polybalm to fingers and toes - this was a random act of kindness gift to me and I’m so grateful for it.

My appetite has been badly affected, so I'm losing weight (about 3 kilos since a couple of weeks before diagnosis). When I'm in the slobbing around phase, I wear yoga trousers and random jumpers and give not two hoots what I look like (which is so not me!). The rest of the time my usual clothes are fine, just a bit looser.

You've done a wonderful thing donating your hair. And it will come back (I have to keep telling myself that) 💐

I'm still here waiting for my treatment to start 😡

I have had another postponed surgery for another biopsy so I'm still just on the starting block waiting for the race to start 😢

It's invaluable to read the posts of everyone further down the line than me.
Definitely a case of forewarned is forearmed.

I've found some people around me are getting 'bored' of it all when I can't give them the updates they want.
Even my DH said to me the other day that I should forget about it until there's something to worry about.

It's so easy for everyone else to put it to the back of their minds and get on with life, not so easy for me.

One of my closest friends has ghosted me for a week and when I asked her why, she said it was because she didn't want to tell me about the good things going on in her life at the moment 😢
She's going away this weekend on a cruise for her 60th birthday which I know she has been excited about for ages.

I sent her a message this morning asking her to send me a silly photo of herself each day enjoying the cruise because that would make me smile.

She's lovely so the thought she couldn't talk to me about it made me feel terrible.

I try so hard to make sure that any affects on others is minimised.

Oh @drivinmecrazy I just want to send you a big hug!
I can really identify - I worry sometimes about something similar. Like in my mind people are thinking 'stop going on about your cancer!', or 'it's no big deal' or 'there's no point worrying' etc. But (a) I don't think they are thinking that - not really, and (b) it is so different watching it happen to someone else versus it actually happening to you. It really is a big deal for us, and even though I think we've both been a while since diagnosis, we are still really at the beginning of the whole process and of course it is going to be nearly all-consuming as we try to navigate it.
Also I don't think that you need to try to minimise the effects on everyone else. I think they should all definitely be looking after you! (Have you seen that thing about the concentric rings... they should be putting support in and dumping out or something like that?) Maybe that is what they are trying to do, but just not always getting it right? Like your friend might think it would be unhelpful to talk to you about her life, so she is trying to help you, but just has the wrong idea about how?
I had a friend who had had breast cancer and found out through another person that I had it too. She responded by emailing and included some beautiful photos of the place that she is living at the moment. She gets it! I think that you just need to help your friend understand how to support you, and your idea of a photo a day from her trip sounds perfect!
(Inspired by you, once I have had the mastectomy and am restricted in what I can do for a bit, I am actually thinking of asking my family for a story a day about what they've been up to. I ask for this sometimes - because I think story-telling is a great skill for my teens to learn, and because I want to hear about the funny or interesting or important part of their day, not necessarily a full run-down! But a story a day will keep me connected and hopefully a bit entertained!)

I'll join you at the starting line @breastcancerpanic @drivinmecrazy . My appointment with the surgeon yesterday was informative and positive BUT his list is full until the end of November although he's trying to fit me in before the end of this month - I'm not ashamed to admit I cried. He was lovely and very apologetic and I'm clinging to the hope that he can squeeze me in somewhere.

I had a pre-op assessment booked for this morning plus an ultrasound on my lymph nodes so was thinking at least I'll get those ticked off but no the pre-op was double booked and they were trying to get me in for next week. I had a tantrum (most unlike me normally but these are not normal times!) and they're doing it tomorrow at 8am before my gynae biopsy. My consultant said that the gynae people must liaise with him before any action is taken, if it's needed.

I know it's unlikely that I'll need it before next week but I need to be ready and have achieved something in case a miracle happens.

On the plus side the ultrasound was clear, yay. The first piece of good news since this whole nightmare started. I also have a referral to the clinical psychologist - it was offered and I thought why the heck not, I need all the help I can get.

I'm toying with the idea of setting up a WhatsApp broadcast list for my closest friends who are being lovely but I do find it exhausting updating them all. But then I think it's a bit presumptuous to do that.

A story a day sounds nice, it will widen the horizon a little and hopefully bring some cheer. I have had a few people offering to come round/go out for a coffee and a part of me just wants to hide away like a snail in a shell - I think it would be good for me to get out but I'm not sure I can face it.

To those of you starting treatment yesterday I hope everything went as well as it could and that you’re now somewhere comfy resting.

i went to a “look good feel better” workshop last night. I didn’t think it would be my thing initially but it was super fun. Met people like me!!! Which was my main intention.

so I’d 10/10 recommend going if you are offered the opportunity

I'm thinking of going to one of those @ememem84 None are near to me, I'd have to travel to the Maggie's Centre at Bart's Hospital in central London. The thought of that currently is exhausting 😔 Maybe in the future...

If you can stomach the journey @BatshitCrazyWoman it was worth it (for the goody bag alone - I came away with about £300 of full size skincare and make up products).

I’ve just absolutely lost it with family. DH and the dc.

come downstairs and their breakfast stuff is everywhere, there’s no breakfast food for me (no bread no eggs no cereal) and the downstairs is a shit hole. As is uostairs.

my cleaner is coming at 11. But in order for her to clean I need to tidy shit up. Because I pay her for cleaning not tidying.

then the dc are lolling on the couch. No one has any clean clothes.

That is not on @ememem84 I'm annoyed on your behalf.

I’ve rage tidied. And have now taken myself off to cafe for a bacon roll and a flat white.

I’ve thrown bedding in the wash (I always strip the beds for the cleaners). Have rage put away the kids toys - not organised just bunged in baskets and boxes.

and have rage put all of dhs clean clothes which were on the floor in the garage near to the dryer.

bugger them all.

feel much better with my bacon roll.

Enjoy @ememem84 !

Applauding @ememem84 from the sidelines.

Here’s an “am I being unreasonable” for you.

aibu to stop the cold capping and hope that when I start the weekly packitaxil my hair no longer falls out.

the thought of having to endure another 3 hours of cold head is worrying me.

My hair has definitely fallen out on Paclitaxel (I am just having Paclitaxel so I don't have another type of chemo to blame for it...)

I am not cold capping as I just did not care enough and knew I would find it hard to cold cap.

Not all of my hair is gone - but it's thinned by about 40% and I've given myself a buzz cut with clippers as it was distressing having long strands fall out.

I guess it depends what your tolerance is for hair loss! But you might want to continue cold capping if you want to minimize loss.

Reading with interest as I am not convinced I’ll manage 16 cycles of chemo & coldcapping. I’ll give it a go and see how I tolerate it.

how many cycles of Pax do you have @ememem84 ? Are you currently on ec?

@londondragonite sorry its crap but I guess a “well done for taking control” is due - if that’s not one of our trigger phrases.

also sorry if people are repeating themselves. There’s a lot for my mind to keep up with at present.

@dancingwhilstfacingthemusic yes. Currently on EC then moving to weekly paclitaxil. My oncologist says that the dosage will be lower so I’ll see lesser side effects.

im weighing up the pros and cons of continuing the cold cap:

pros

• might save the remainder of my hair
• apparently helps regrowth

cons

• hurts
• makes me anxious
• my hair has already dropped by about 60%
• im going to have to cut it to make it more even anyway
• lengthens the treatment time by 90 minutes
• It doesn’t help the cancer go away. If it did I’d be on it all the time!

Thankyou. I’m sorry to hear the downsides for you. Thankyou for being honest - I’ve heard similar from others.

FWIW I’m already finding it easier to manage now my hair is cut.

someone mentioned taking a period pad to put on my forehead to help against the icecream headache - is this a thing?