Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

There is a cold cap Facebook group which k have found helpful - search Paxman Scalp Cooling Group - a lot of American users but helpful - also generally helpful for other chemo advice.

I'm wondering the same thing. I've just had my third EC, have lost maybe 80% of my hair. I think the protective effect on hair follicles is the only thing that's going to keep me going I have one more EC and 12 pax to go ...

I'm on the Paxman Facebook group, mostly I look at people's hair regrowth stories on there ...

Anyone's adult child not supported then through cancer treatment. I'm really struggling.

I'm sorry @tothelefttotheleft What has been happening?

Both my adult DC have serious issues of their own (disability/serious mental health issues) so I don't expect support. And I live on my own, so I just have to manage.

@BatshitCrazyWoman

My 19 year old wouldn't do anything physically to help me no matter how sick I was during treatment. For example they wouldn't do the vacuuming or washing up. Not even if I was too sick for chemo.

They've just dropped me completely.

I'm so hurt.

Oh I’m so sorry about this. That’s not ok. Sending love and support.

I do wonder though (and I’m in no way excusing the behaviour) whether they are struggling with your illness.

what’s their situation?

working/uni?
do they have a partner they can confide in?
do they live at home still?
are they able to “carry on” with their life - see friends etc?
do they have access to (or know they have access to) support from places like Macmillain etc?

looking at DH the last few days I can see that cancer is all encompassing. I’m the one with the illness. But he’s also struggling. He’s working trying to do as much as he can for me especially on treatment days. he needs to go and speak to someone. But won’t because he can’t organise it…..

Another day another coffee out.

Just did a Waitrose shop (nothing needing freezer) I had a choice of going home and rushing to unpack and put away before my Pilates class at 11 or….sitting by the sea with a coffee.

I chose wisely.

@tothelefttotheleft im sorry too. Wise advice from @ememem84

That’s a very restorative photo @ememem84 and a good choice.

have any of you found that chemo has affected car insurance? My specialist said to check as they’ll be giving me drugs which make me sleepy on treatment days, obvs I won’t be driving then, so they said to contact my insurers. I’m not quite driving yet after my op and am starting to wonder if I need to SORN my car to save money!

To all having some sort of treatment - have a look at the Little Lifts website. I’ve just applied for a box to give me a pick up as I go through chemo. What a lovely idea it is to do that for people.

No I haven’t looked at insurance but am aware they the drugs make me around 4x the limit so am not driving until day 5 post treatment just in case

@ememem84

"what’s their situation?

working/uni?
do they have a partner they can confide in?
do they live at home still?
are they able to “carry on” with their life - see friends etc?
do they have access to (or know they have access to) support from places like Macmillain etc? "

They have a job. Has a series of different partners. Have carried on with their life ( stays out without letting me know etc) Know about McMillan etc.

They've Said to me they only care for themselves. Expect me to care for them whilst they do nothing to help me.

Car insurance never occurred to me and certainly hasn't been mentioned. That could be a real problem, we're in the sticks with no public transport. I'd hate to be stuck and have to rely on friends even if only for some of the time. God how your world seems to shrink with this bloody thing.

I've had a slightly better end to my week though, as well as nothing abnormal detected in my lymph node ultrasound I had my pre op assessment and am good to go on that which will hopefully be in the next fortnight. The gynae appointment went ok and there's a bit to be done under g.a which they will do whilst I'm having my lumpectomy (joined up thinking, hurray) but they are confident there's nothig to worry about. Also the breast surgeon is reasonably confident that at this stage a mastectomy isn't necessary. I'm well aware that all this could change but after the last couple of months it feels like a win.

I'm sorry to hear you're having such a rubbish time @tothelefttotheleft, that must be incredibly hard to deal with on top of everything else. Lovely photo @ememem84, we're miles from the sea and my view is nowhere near as soothing - rain, mud, roadworks!

That’s really hard @tothelefttotheleft I hope you have other decent support.

@ememem84 thats interesting - they mentioned the antihistamines to me and they also make me very sleepy. Will have to check on the other contraindications. You’re very right indeed @frostyfingers our worlds shrink. I’m very pleased to hear that the scan has showed that nodes are clear and that you have some joined up work for your op.

@tothelefttotheleft that's very hard for you, and so unfeeling.

I don't actually feel well enough to drive, so I hadn't even thought of insurance!

Today I've managed to eat a tiny bit, and have hoovered downstairs and washed the floors. I'm back under my blanket watching Rivals now, that was enough activity for the day...

I did the same when I went through radiotherapy - it was such a lovely thing to receive and cheered me up no end. I think you'll enjoy yours😀

Sounds a sterling effort. I'm looking forward to Rivals - is it worth the watch?

@PaperbackWrighter I'm loving it!

@BatshitCrazyWoman Great, I'm looking forward to it even more now!

I know you are going to flame me for this but it does irk me that it’s 9/10 for breast cancer. Why can’t they just be generic boxes? They are never for people with rarer forms of cancer, I know how horrible that sounds but it’s becoming more obvious to me. For instance our Trust now does free eye microblading for those with breast cancer, what about the rest of us???☹️ I work for the blinking trust I feel like emailing them other women have eyebrows too!!

Im so so sorry for that rant. I really am.

You have a very valid point @EachandEveryone

it’s awful all round.

also, that’s great about the funded micro blading although should be for all. I wish our trust did micro blading for people going thru chemo as it cost me a good chunk of my fighting fund and is essential for my MH.

Yes I wouldn’t be without them and I’m glad that women can get them for free the chances are though that it will be all the Hampstead crew that can well afford it that will be first in line as that’s where the hospital is. Hopefully the nurse specialists will tell the all the patients otherwise unless you follow the hospital on Twitter you’d never know. It’s an amazing donation from someone I expect,

Omfg I’ve just watched the first episode of rivals. Love. Took me right back. I first read Polo when I was about 14. Stole it from mum. I love a bit of jilly cooper. Proper guilty pleasure.

@tothelefttotheleft im so sorry that they’re being like that. It’s so hard. Sending so much love your way. Xx

Don't be sorry - I totally agree with you - I've sometimes thought as someone with BC there's a lot of emphasis on BC. What happens if you have a different sort of cancer? It reminds me of when I used to work for a cancer charity and there was a support group for staff who had lost loved ones to cancer - my dad died of heart disease but where was my support group? You have every right to say this @EachandEveryone and maybe you should approach your Trust and make the point what about the rest of us? xx

It does seem that breast cancer dominates. My Mum had pancreatic cancer, and there's nowhere near the awareness/publicity.

I would have had my eyebrows microbladed, but I basically had half a day 'free' after diagnosis, before loads of appointments (EEG, ECG, blood tests, pre op assessment, port insertion, MRSA screening) and then my first chemo, so I didn't have time 😕

It really is a belter shelter isn’t it? Hopefully it means we’re sooner out the other side.

My dh has been brilliant as I’ve now not been driving for months due to all the operations and he is taking me to all appointments as well as working. The place I’m having chemo is about half an hour away and the bloods machine is currently broken so it’s two trips per week as they can’t do bloods the same day. Having had the suggestion from the surgeon team that it would be 6x 3 weeks, finding out it’s 16 treatments has been a shock to us both and logistically is a challenge. Hopefully, some of my friends will do a few of the trips to help lighten the load.