Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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Hi @Pinchaperfect - I have created a thread for us stage IV unfortunates if you fancy popping in. I’m going between both threads! The more support the better. I’m due to be starting cape & we are discussing all these hand & foot syndrome stories. I’m proactively preparing by moisturising my feet with the Swedish CCS cream & I’ve got some booties that you wear over your feet when you’ve creamed them lined with rubber. Quite an innovation I thought but quite hot. I shall enjoy them in winter I imagine.

Thread is here: https://www.mumsnet.com/talk/life_limiting_illness/stage-iv-cancer-incurable-roll-up-roll-up-this-thread-is-for-you?reply=128194457

@mowly77 Thank you, I shall come over and join. That was the cream I was using before I used the one they've prescribed for me. The booties sounds interesting I'll look those up, I've be wearing cotton socks over night after putting on a thick layer.

@mowly77 can you possibly link to the boots please?

Hi @TwigTheWonderKid yes they’re here! I was amazed at the innovation. As I’m currently in the US I bought them from the American Amazon site, but these ones on the UK site are almost exactly the same.

https://www.amazon.co.uk/kuou-Moisturizing-Socks，Gel-Essential-Vitamins/dp/B088WT9QQ6/ref=mp_s_a_1_17?crid=PPYW54BHVFHI&keywords=socks+for+foot+cream&qid=1691337566&sprefix=socks+for+foot+crea%2Caps%2C190&sr=8-17

@mowly77 There was a recent trial of Voltarol gel that showed it helped prevent HFS. Apply a pea sized amount twice a day for prevention. Then add moisturiser.

Thank you Top!

Honestly why is this thread 1000 x more helpful than NHS advice! My oncologist even told me cape doesn’t cause nausea. I bet it does for me, because all cancer drugs give me nausea.

Thanks for the link @mowly77 and the Voltarol info @TopOfTheCliff . I felt so "cocooned" and looked after when I had my breast cancer treatment. My surgeon and oncologist were amazing, as were the BCNs and there was so much information available. I feel completely abandoned with this cancer and it's amazing what a difference that makes.

Good morning all, and a belated thank you for the new thread and for all your updates. This really is the best place I've found for advice, support, perspective much needed humour, and without all the schmaltz!

It's my last chemo session today...and I'm having very mixed feelings about it all. The last cycle (TC) was much tougher than the others both physically and emotionally so I'm pleased this is the final one, but I'm being inundated with well-meaning and kind messages from people along the lines of 'Brilliant this will all be over soon' and 'Now you can get back to normal' etc when the reality is that this isn't all over. I now have to do 5-10 years of hormone blockers which I understand can have not great side effects for many and have to try control recurrence anxiety (which is very real). Im feeling like I need to try and work out what a new normal may look like...has anyone done the Macmillan Moving Forward course? @TopOfTheCliff I think you may have mentioned that you had? Was it any good?

I felt the same at the end of chemo @Atreus No way was i going to ring the bell: it’s not over yet. (No disrespect to people who do find it helpful. There was a woman with little kids on my unit and they let her children in to ring the bell with her. ) I also felt oddly cut adrift without the regular cycle of chemo to focus on. Having said that, my side effects from letrozole have been minimal so far. And I was really dreading it, having read so much about how hard some people find it. So you might be lucky too. Thinking of you today.

I did the Maggie's Moving Forward course, it was OK and you get to chat with about 8 other people who've had cancer over Teams but not sure it was that useful, you could try it and see. I was very happy when chemo was over but I found some of the effects took about 3 months to go though not too bad on tiredness once radio over. Radio is you have it was super easy after chemo. It is a new normal. The hormone tablets I don't find too bad - I mean I'ld prefer to have to take nothing but no hair thinning, no nausea, I do have insomnia and mood swings but don't think they are especially linked to Tamoxifen more to menopause, very little hot flushes, occasional night sweats, no aches and pains. Teeth I use higher fluoride prescription only toothpaste as it is hard on teeth. I have good energy levels and pretty fit again now and since I've started swimming a lot very rare for me to get ill. I do take a multi vitamin sometimes Wellwoman 50, maybe one a week which stops aches if I get them. When you first try the hormone tablets its hard to tell what effect is coming from what as chemo effects can last 3 months more or so, you have radio effects and hormone tablet effects. I would say overall its similar to taking an anti depressant a day in terms of side effects, when you first start you get more effects then you adjust.

We were supposed to go to a garden's in Chelmsford for the flower show yesterday but ran late so ended up watching Barbie in an empty cinema instead. Also went swimming so nice weekend mostly. Though I have so much trouble sleeping.

@Silkierabbit mundane question- which high fluoride toothpaste do you use? Is this something you get on prescription or can you buy it?
I’ll be on maintenance after all this - so keen to minimise side effects.

@RedRosesPinkLilies , I was prescribed Duraphat2800 when having chemo, but you can buy it from dentists too. And possibly from chemists, I’ve never actually looked! (Still lost a tooth tho 🙁)

You can order Duraphat online.

Thank you x

@Atreus I felt exactly the same after finishing treatment. Everyone around me was very celebratory but I felt like absolute pants, totally fatigued and mentally wrung out and knowing I had a three month wait til I knew whether treatment had actually worked or whether I would need more treatment. I feel almost convinced that I will just about get back on my feet then the scan will show I have more to deal with.

I read somewhere that once you have had cancer, you always have cancer mentally. I suppose it's that switch from assuming it's never going to happen to you to knowing it already has. I know regardless of what the scans show the fear of reoccurance will always be there - I don't think I've ever been so aware of what's happening in my body.

@mowly77 another one wishing you well on the s4 thread but also echoing that there's always a space here.

I only dropped off for a week and the thread changed 🤣 @lucysmam I saw Hansel and Gretel, love the teeny witch especially! Love seeing other people's creative moments.

thanks also to those who were reassuring me that it's okay not to be crushing life and to be just surviving when there are young kids in the mix!!

Ive just had my first EC chemo last week (3 x 3 weekly so two to go) and reading the experiences has been very interesting. I've not been tooooo bad but a very short walk has just wiped me out, my legs are so weak!!! Docitaxel to follow after that, no idea what that will be like. I just feel a bit wrong all over for the most part, so far, but no major symptoms.

Hope everyone is having a good day today (with maybe even some sunshine)

I got up at 8am feeling a bit rough, this morning, so went back to bed. Still not feeling quite right now so just having a cuppa. Think today will be a slow day topped off with an early night!

Might potter a bit inside & then take my crochet into the garden if it stays nice out.

Have a good day all...or, at least, a not too bad one!

It's a glorious day here today. I have my kidney surgery tomorrow so am taking my boys out to do something fun today. Though being teenage boys, their version of "something fun" is a trip to Costco... Am hoping we can stop at Hampton Court on the way and have a little stroll along the river too.

Red My dentist prescribed Duraphat 5000 to use twice a day from before chemo and said to continue on that indefinitely atm, possibly permanently or at least whilst on Tamoxifen. I have a private dentist as can't get NHS ones here but he's brilliant. I haven't had any dental issues so far though Tamoxifen is dire for your teeth so he said may need 2 fillings in 3 months time but borderline but that's after 1.5 years and also a bit rubbish at brushing teeth.

@mowly77 with each cycle of Cape I get a goody bag with the 140 pills, a pack of anti sickness pills and some loperamide. I have a stash of Laxido at home too. The start of each cycle is constipating so you need the laxatives. My appetite is down but only occasional nausea (usually when I am hungry oddly). Once through the course you stop and get a reflex diarrhoea for which you need the loperamide. That lasts 2-3 days then you recover in time for the next round. It’s actually the fatigue I have found disabling. My batteries are still down at 20 percent even after three weeks off. And then there’s the feet…

DM and DSis came to stay the night and it was lovely. They brought those French praline chocolates shaped like sea shells and I have pigged out. Now feeling sick! It’s my own fault though.

I showed my personal trainer friend the Sea Soul Blessing cards I bought and she picked Alive which is all about vitality and I picked Resilience which is about enduring. How amazingly apt was that? They sooth my soul.
love to all
Top

I have my follow up on Wednesday i cant feel it in my lymph nodes but theres definately a puffy moveable lump on my pelvis. God knows what. Anyway, theres nothing I can do. If I have to have more chemo so be it but I am worried about my salary going to zero in December. More about what this would to to my pension as I read somewhere that in the NHS any zero pay days resets all your pension benefits😮this would be terrible for me as I can take mine at 55 which is now! I should ring someone but I feel like everything is on hold until Wednesday.

@EachandEveryone thinking of you and your scary wait. Re your pension, are you in a union? I was chatting pensions with a friend the other day who had to make some complicated decisions re her NHS pension and she said she’d had good advice from Unite. Surely it can’t just reset? But like you say, perhaps you need to wait until you know the plan for the next stage.

Yes. I know we aren’t supposed to look ahead but when it’s only your wage coming in you tend to have to. If things go ok my plan was to go back 33 hrs but to split them into the old fashioned earlies and lates and much less clinical. Then I hope they will allow me to retire and return doing that. Of course I’ll just blow the lump sum 😂😂

@Atreus I did the Moving Forward course online during lockdown in 2021. It was very informative and useful in terms of what to look for in future spotting problems. I found it quite dull and unrewarding in terms of contact with other patients as hardly anybody posted anything. A book would have been as helpful. I have signed up to a face to cafe course in November and am hopeful I will get more out of this in terms of emotional support and acknowledgement of the awful shit show we have endured. I know all the facts already. I will behave myself beautifully and not cause trouble 😇

@TopOfTheCliff I think you should wear a ‘been there, done that’ t-shirt to your course! 😝

Sending positive vibes to everyone. Still shattered from surgery, hobbling around like an old woman with my aches and pains and just generally frustrated at my lack of energy to look after the smalls during the school holiday.