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

[LemonDrizzle10]

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Definitely not a hair expert. I am allergic to hair dye so only use tiny amounts, my hair did come back dark brown with odd white bit though so no big issue with colour but a big issue with the chemo curls which drive me nuts. Hair is really thick as well, hairdresser reduced but still too thick. Maybe it's the curls. I really want it longer and straightish like it used to be. I think it's meant to be no colours for first few months though I think some people do.

What would happen if I did use the hair dye too soon?
My friend from the chemo unit described the new hair to be like coconut. It’s a good comparison- my hair looks like the outside of a coconut. Some of my hair looks like the inside though to be fair. I wear a hat most of the time!!

@LemonDrizzle10 what sort of hats do you wear?

So did the dentist thing,pre RX . I have 3 teeth of concern but 2 deffo won't survive, so they need to go
I'm a medic retired but just haven't been on that side...
Helpless springs into mind
And still hoping that despite wanting to be NHS, nothing would be different.

Sending all my new tribe love

@lucysmam I’ve got a couple of straw wide brimmed hats but spend most of the time wearing a baseball cap. It hides my greys and dark roots and when my hair was really delicate stopped it blowing away on windy days. Using the hairdryer was a bit daring!

@nappybrained you're not helpless - you’ve made the effort to get to the dentist, a solution will be found.

I think there are some non-chemically dyes in Holland and Barrett that aren’t henna Top. A friend of mine has used them. I’ve decided as most of my grey has now grown out, although I think there is still some dark brown hair in there, that I might as well just go with it rather than dying it and having to go through the pain again at some point of growing the grey out.

When I was younger, I was desperate for hair with a bit more curl in it, it was very fine and straight, but now I’ve got curly hair I’m not sure I’m not keen, maybe it’s just that it doesn’t feel like me.

Hey, I haven't been here for a week or so. We were on holiday and I wanted to firmly put my head in the sand for a while 😂

I've read all of your updates and escapades though. I hope the week has been treating you all well. Especially love the boots @lucysmam and how thoughtful your DDs were! I hope my DC grow up like that. And @PollyCreo your police story is epic!

Had my pre-op yesterday and all was fine that they could see results for instantly. The ECG was a new one for me. Just waiting for a surgery date now and trying not to be upset all the time (waiting on a midline cut to remove a 16cm ovarian tumour - although reading here I'm now worried it'll be bigger!)

Thank you for all the hospital tips, I've been slowly packing my bag. I bought a knock off version of the snoozeband from amazon and it seems good so far for half the price. Will link if anyone wants me to.

Hi all, a question about fatigue. Had my 3rd TC chemo on Friday and am totally wiped out. With previous rounds I could still function despite various issues. Now I can barely do anything but lie down. Apparently I have very low iron and have gone slightly anemic. Should I request an iron infusion? Has anyone else had one during chemo? I hate to think how bad I'll feel after cycle 4. I ate a big slab of liver the other day, but it really hasn't shifted things.

I was anaemic @isaxx, but they didn’t do anything other than delaying chemo for a week. I think you have to be quite bad to get an infusion. They do sometimes give injections to prompt your blood cells into action, but I’m not quite sure whether this is just white blood cells, they seemed to have significant side-effects though and I was working, so I decided not to have them as I didn’t feel that bad. My iron still isn’t great though nine months later, but I can’t get any doctors to take any interest in this. Worth checking with the chemo nurses.

@isaxx I had a blood transfusion in the end for low iron/white cell count (not treatment for BC though) felt so much better afterwards. It's definitely worth asking the question.

@isaxx I finished 4 rounds of TC about 3 weeks ago and I definitely found cycle 3 the worst both physically and emotionally. I coped pretty well through cycles 1 and 2, but found a massive difference in terms of fatigue with #3. I didn't contact the chemo Center about it, I just hunkered down and felt a bit sorry for myself (and watched about 3 seasons of Below Deck which is my guilty pleasure). My bloods for cycle 4 were all fine so I don't think I was anaemic but I'd definitely contact your chemo Centre if you're worried. Cycle 4, I also felt really tired and the awful taste you get in your mouth lasted a few days longer but I think it didn't feel as bad as I knew it was the last one.

I have a question, after an incredibly quick phone call before signing off the last 3 paclitaxel, with a doctor I've never met.

My usual oncologist said when I saw her last that my ct scan was stable & there's no further/new growth. This doctor said that she can see from the ct that the cancer's having a very good response to the chemo.

Which now leaves me wondering; how open to interpretation are ct scans? I, probably obviously, prefer the "very good response" statement over stable, but am not sure whether they'd be the same thing? Does that make any sense? It does in my head 🙈

@nappybrained i think the NHS is designed to make us feel helpless. I was a Dr, stopped being one 20 years ago for the children. Spent many years on the opposite side of the desk because of their chronic illness. It’s pretty horrid, not just in cancerland.

its almost a miracle when you get recognised as a person, or as a concerned parent, with a bit more insight than average.

It would be much better if patients were empowered by engaging them as equals in treatment.

I find you have to go with it. I’m making myself speak out a bit (at least I have the confidence being a Dr gives you), but in reality I know nothing about oncology.

I once saw an old Professor of Medicine asking at the GP receptionist about something or other. She wasn’t being that helpful, from what I could see. In reality we are just another patient

Use your medical brain instead to keep track of things/ and to proactively change your view of life. Ie - do what makes you happy.

Basically what ever other intelligent person is going to cope in this situation. X

@RedRosesPinkLilies my dear old dad used to get very upset when he went to the hospital. He was an eminent psychiatrist with all his marbles at 86 and so resented being treated like a dim child. Occasionally one of the staff would remember him and it made his day. When they did dementia screening he would quote the Babcock sentence* and the youngsters hadn’t even heard of it.
*One thing a nation needs to become rich and great is a large secure supply of wood. It’s a test of verbal learning and recall.
Fun birthday today for me. I’ve started the Zoe tests with the sickly muffins and had an eye test (passed). Now I just have to serve supper to 50 friends at the sports club. Tomorrow is back on the horrible pills.

@TopOfTheCliff I’m sorry about your dad. It’s pretty poor, and reflects the fact that the NHS doesn’t respect patients for the individuals they are

I was slightly interested in Zoe - but it’s so expensive. Will be interested to hear what you think

Had my surgery - keyhole for primary peritoneal cancer last week. Was all going so well, and now four of my wounds are infected

GP and nurse were excellent- iodine dressings and Augmentin/ Metronidazole

Guess I won’t be drinking at the family wedding at the weekend. This is probably a good thing!

Happy birthday Top

LucysMam I was told the ct show bigger things well, I think they are accurate but sometimes miss tiny things but if concerned they would be doing further tests. Oncologists aren't known for giving good news without evidence so I think you can be pleased with that.

Still in Mauritius. DD was just on her phone in the room, kayak refusing as she can do that in UK. I managed to get her out to walk along beach then sunbathe with phone whilst I went in sea and swam in the pool. I was in it alone and could see beach, sea, thatched umbrellas, all beautiful tropical birds and palm trees with coconuts. Swam for about 2 hours in sea then pool. And some lovely meals with little birds. I love all the birds here.

Sorry you have infected wounds Red

Re iron I just ate high iron foods like steak with spinach and that was enough to bring me back to life but any issues call chemo line.

@Silkierabbit Thank you x

All is well that ends well: I had an MRI of the head about two weeks ago. The radiologist who reviewed it reported an abnormality - either mets from breast cancer, or sarcoma, most likely, they said (!) - in the base of the skull. A seven-centimetre area, so pretty big.
I was completely devastated.
Then had an extra PET Scan. Results last night: they now think it's an incidental lesion - not metastasis, not sarcoma, but basically... Nothing to worry about. They reviewed all my older scans, and this lesion was there in 2020 and 2022 and hasn't grown or changed at all.

I just thought this was good to share, as I thought that MRI results would be pretty conclusive. But turns out they really aren't, and having multiple tests, and reviews by multiple people, is really the way to go.😅

It would be much better if patients were empowered by engaging them as equals in treatment.

My endometrial cancer was fairly unusual and I felt I was a statistical outlier in the treatment category I was in, as there isn’t the same granularity and computer modelling as there seems to be with breast cancer, so I read pretty much all the main research papers to come to a conclusion on treatment. My oncologist once said, “You know as much as I do”, but it was almost like he abdicated responsibility for decision-making and wouldn’t actually discuss it with me, he just shrugged when I asked a question and I had to come to my own conclusions and get a second opinion.

My DD is doing nurse training and I was talking to her about the emerging research around the microbiome and cancer treatment, but she just rolls her eyes at my weird ideas! I told her that this is what the NHS will be doing in 20 years, working with the microbiome to optimise treatment and recovery, but that made her think I was even more mad I think!

@Silkierabbit your swim sounds amazing (although my brain wanted me to type amusing & it took several attempts to write the right word 🙄).

I am taking either option as "good", really. Just one seems more good than the other & it made me wonder.

Good news @KentishMama!

Happy Birthday @TopOfTheCliff !

Iron dinner for me is steak, spinach and fresh orange juice. You need the vitamin C to absorb the iron…might be a myth but it’s pretty tasty.