Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

*doing lots with your hair…

That will teach me to proof read!

Oh and it’s advisable to take a couple of paracetamol half an hour before you get hooked up, it makes it more tolerable xx

@TwoBigNoisyBoys thank you.

Can I just say that I have developed a lovely looking bunion on my left foot? My first thought was “oh, it’s a bump, it’s cancer!” Then I brought myself to my senses but still…

@twobignoisyboys thank you so much for you advice, I do get brain freeze sometimes to be honest. I will have to give it a go and see how I find it. Thanks for the tip about the paracetamol too. I used to think I was a wimp 🤣 but after having the breast biopsies and the wire inserted before surgery without even flinching, I think I'm pretty hardcore now So I'm definitely going to try, but will also have a wig ready. I'm going to need to get my hair cut too aren't I? It's past shoulders at the moment.

Sending big hugs to everyone on this thread

@Justalittlebit10 you’re very welcome, I’m happy to help 😊

By coincidence I had my below boob length hair cut into a just below chin length bob about 2 months before my diagnosis and I have to say I’m so glad I did, as it made it much more manageable than I imagine it would have been if it were still longer. You don’t have to have it cut, but it might be easier, especially with regard to the weekly wash and only combing once a day.

If anyone is going to have a haircut anyway, perhaps consider the Little princesses trust -I chopped off my ponytail just after first chemo (when I’d lasted less than 5 minutes with the cold cap!) and sent it to them. I got a lovely thank-you email and a certificate and everything!

I think I will get it cut. I have bleached highlights in mine... Do you think they would still take it?
I would probably have about 5 inches off... Is that enough? Would donate it if I can.

@mrswooster did you find the cold cap awful? I'm really not bothered for myself but I really think this is what would upset my daughter the most so I'm going to try it for her really. She has SEN but doing really well at the moment (currently being educated by a fabulous online school due to school anxiety), and I'm so worried about setting her back.

I managed to establish that hospital have my prosigna results today but after saying they would give me them in advance they were saying today that was no longer possible and also an appointment with chemo has appeared for 3 weeks time so fairly certain results are not good. Video appointment on Monday.

I also have a SN child, my DS, who is in y10, who is very anxious/asd and went mute in third lockdown and not spoken to anyone since. I had ruled out cold cap as it makes treatment longer but actually may give it a try and see how get on. I always cry at photos of younger people losing hair and also how it comes back so it must bother me. I think would bother my DS too. I am normally good with cold, its heat I am bad with, not sure if I get brain freeze, think not but do get sensitive teeth at times with cold. I may give it a go, may last 5 mins too but its an experience. Mine is just below shoulder length. My eldest is doing gcses this summer and was very excited to read she can ask for special circumstances if I am doing chemo / radio at times of her exams which I should be.

@silkierabbit, my DD is Y8, she has had selective mutism (with adults except her parents, fine with kids)since she was 3 but we are finally starting to see a massive improvement since we stopped forcing her to go to school. I just want things to keep progressing on the right path for her.

I also can't tolerate heat and am better with cold, I guess all we can do is give it a go and see how we get on.

My son is doing his A Levels this summer... I wonder who should contact re the special circumstances?

I hope your video appt on Monday goes well. It's so difficult waiting all the time isn't it. I had just 13 days from being diagnosed to my surgery (surgery was actually only 22 days after my initial mammogram), so everything was rushing through at the speed of light, but now it's all gone quiet and I have to wait 4 weeks from op to results!

Aww Just your DD is like my DS then, he is a mouse.

The special consideration DD had heard about and I looked it up and for gcses appears to be 4% but only if in treatment at time of gcses (though if not still be worth trying but no clear category). I googled it and one of the exam boards had published the guidance. It said the child should contact the schools exams officer. I will probably do that for DD, she asked me to, not sure when exactly you say but probably mention it sooner rather than later and presumably need proof like hospital letters. Definitely worth looking into for anyone with kids doing exams this year.

[quote MrsPnut]@catzrulz Did they tell you what drugs they were giving you?
There is a carbol/taxol/avestin cocktail sometimes given every 3 weeks, then the 5 weeks of chemo rads will be cisplatin chemo and radiotherapy at the same time.

I do recommend joining this group if you are on Facebook www.facebook.com/groups/275836379587444[/quote]
Thank you so much, I did join the group.
It looks brilliant from what I've managed to look at so far.
It all helps to make you realise you are not as alone as you think you are.

Hi, Just
I think 10” is the minimum for hair.
I found the cold cap intolerable, actual, ripped-it-off-my-head intolerable but it’s different for everyone. My son was the most freaked out by the idea of my baldness but he’s ok now-prefers it when I wear a scarf to when I’m wandering about like Aunty Fester but so do I!

Hi. Didn't know MN existed the first time I had cancer but glad I do as I've just been diagnosed for the 2and time in 6 years. I have anal cancer. First time was treated with radiotherapy and chemo in tablet form. Lost my hair from neck down and from hairline so all in all didn't do too badly I guess. Still waiting on my CT scan to see if this diagnosis has spread anywhere else yet but have been told I will also need a stoma which I'm absolutely devastated about. Don't have my treatment plan in place till CT so just sitting waiting really.

Welcome @Itsbackagain to the thread, though also sorry you're joining it, especially as you're in the limbo of the waiting zone. Will the stoma be permanent? I know sometimes they can be temporary whilst certain treatments are going on. Also what's your home/work/family situation?

I tried the cold cap but had to give up after two sessions as the chemo was making me feel so awful I couldn't bear anything else that made me feel yuk. I think it's definitely worth trying if you can tolerate it OK but have back ups in mind.

I tried out a gentle pilates session at my local camcer support centre this week & was most amused when the reminder on my phone came up as it had autocorrected to "Rehab Pirates"

@HauntedDishcloth thank you. It would be permanent as I also have Crohns which is likely to be what's causing the cancer although I haven't worked out or been told why. I work 4 days and am lucky to have 6 month full pay terms so financially will be fine. I have a fabulous DP and friends and sister for support but I know they're (with the best intentions) not always truthful because they want to protect me iyswim. I don't think I would bother with the cold cap if I get iv chemo this time - looking on the bright side I have naturally frizzy hair which needs straightened so a wig would be easier (I appreciate it isn't the simple)but yes I will be doing anything to make my life simpler. Rehab pirates sounds fun!!!!

Hi everyone,

I had my procedure on Friday afternoon on theatre to reposition my feeding tube, and give me a new thinner nasal gastro tube with NO SEDATION! It lasted 45 mins and was traumatic. But new tubes are more comfortable. Surgeon who did it thinks I'll need to stomach join re doing surgically at some point and the consultant I saw this morning is tending to agree so I think I'll. e having a endoscopy next week to have a closer look (with max sedation!). They told me on Friday morning to expect to be in hospital for "a few more weeks"!! I've been here three weeks already.

Three of my kids came to see me this afternoon which was amazing, one of the twins had a ticket for Lincoln city so he's coming tomorrow with my brother instead 😂

I've lost 20lbs now and they have started tube feeding me again and will weigh daily to keep an eye on it but I still can't eat so it'll keep coming off I imagine.

Also waiting for the pathology report which should be back any minute now.

I feel a bit of a fake reading about your hair loss tales because there is no chemo available for my type of cancer so hair loss isn't a thing with duodenal GISTs

Good luck to you all

Hi @MissSmiley …reading your updates and sending you lots of love, what you’re going through sounds horrendous 😞 but I’m SO glad you got to see your kids xx

@MissSmiley I hope your DC enjoyed the imps win yesterday, are you close to the city?

I’m also glad they have got your tubes sorted and hopefully you can get recovered and home soonest.

@MrsPnut I'm nowhere near going home but the new tubes are more comfortable and I feel like we have a plan

I'm in hospital in Nottingham, it's the closest specialist centre for my cancer. We live in a village near Newark do not that far from Lincoln

So sorry for all you are going through MissSmiley hope they can sort it soon. Glad you got to see your kids.

Itsback So sorry to hear you have cancer again and will need a stoma.

I was not going to do cold cap either but then I found out type of chemo I am being put on has the highest risk of permanent hair loss. Will ask oncologist tomorrow about that.

@Silkierabbit permanent hair loss?? I had no idea chemo could cause it to be permanent, oh god I'm so sorry, let us know what the oncologist says

I think I'm moving out of my side room back to the main ward tomorrow due to having to accommodate an influx of men, at least I had four nights of good sleep

Permanent hair loss from chemotherapy is so incredibly rare, it is probably on a par with an extravasation from a port.

Its one of the things will discuss with oncologist tomorrow hopefully as the drug they are suggesting it does not seem to be rare, study I saw below 23% of women on doc with breast cancer had permanent hair loss (and esp women who do hormone treatment as well and AI which I will be on both). I will see if there's anyway can change onto a different chemo and see what they say. I am not sure whether than can do different ones or not - been offered choice of two but both with doc so does not solve issues, also concerned about heart.

pubmed.ncbi.nlm.nih.gov/33350015/

@Silkierabbit almost every woman on this thread that has breast cancer has had Docetaxol or Paxclitaxel. I have been on these threads since Dec 2020 and been on Facebook breast cancer groups from then and I haven’t known anyone with that problem.

I’m not saying it doesn’t happen but it is rare. When you only look at the negatives then you will only have a bad experience.

@Itsbackagain it’s pants, isn’t it? I had a BC recurrence 18 months ago, only 3.5 years since the original diagnosis. Recurrence has been so much tougher both mentally & physically. I hope that once you have a treatment plan in place you will start to feel more in control. Let us know how you get on.

@MissSmiley you have really had a rough ride! Although I am so glad your DC came for a visit. It seems like such a long slog but you will get there, I know you will. It must be so tough being cooped up in a hospital for such a long time.

@Silkierabbit I am on AI hormone treatment (Exemestane) and had docetaxel (among other chemo drugs) and I noticed my hair started to appear about 4 weeks after my last chemo session. By this I mean I noticed tiny fluff appearing at the top of my bald head. I never had a chance to try out the cold cap - my consultant warned me against it due to Covid (you have to stay a few hours extra on the ward if you are cold capping and in the Summer of 2020 they wanted to avoid that). I doubt I would have chosen to do it anyway as I am a wimp and would probably start tearing the cold cap off my head straight away.