Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

@Silkiebunny

I feel similar. I still have extremely low lymphocytes, and an asthma & lung infection history, so feel vulnerable, but once my WBC levels have improved I won't get the vaccine so often.

Also agree about AZ: I had a night of feeling awful, the chills, headache, body pains etc after that. No problem at all from Pfizer, and just a sore arm from Moderna.

That looks great @stealthwalnut but I didn’t have breast cancer! I think that’s an additional issue in that because there are so many more women with breast cancer than a gynae cancer, there is even less support. It would be fantastic if it turns into something nationwide and for other cancers though.

I’m trying to organise a small operation not related to my cancer, I’m going private because although I could have it done on the NHS the consultant said it would probably be 18 months and it’s something that’s affecting my ability to do stuff. I’ve just spoken to the consultant’s secretary in the private hospital and she says the whole place is in chaos because the NHS is in chaos, they’re overwhelmed by patients and their systems are creaking too. It’s frightening. I had a little cry despite saying earlier that things were feeling okay, I’ve had years and years of shit things happening to derail me, I just want to get on with my life! On the other hand I am happy I am not my student nurse DD, she messaged me earlier saying she’d ended up with pee on her face after four of them had tried to sort out some poor old lady’s catheter!

@Silkiebunny I keep getting reminders because I’m vulnerable too, nearly a year after treatment finished I wonder how long I’m going to be “vulnerable” for!

You are so right @SierraSapphire , breast cancer gets far more attention.

I phoned the MacMillan phone line once about the pancreas. All the nurse could say was that it's near the stomach. They had been fantastic whenever I phoned them about breast cancer.

Ah shit sorry @SierraSapphire!

I think that's how he's got his funding. I had a look at his twitter and previous research of his is around colon cancer and exercise iirc. I've been told by another friend that his proposals aren't v inclusive for secondary BC either.

It's clearly an area that warrants more support across all sorts of cancers.

I was diagnosed with a chronic health condition well over 20 years ago for which I've had to spend my whole life personally hunting out how best to manage it through pregnancy and for longer term health, often finding out retrospectively. Unfortunately it seems there's a higher risk of Bc with it which if I'd known might have helped me with lifestyle choices.

I too keep getting vaccine reminders. Covid and flu. I still have not gone as I am so full (and fed up of) medical appointments, that I just cannot find the will to drag myself to one that feels less essential. I should go really, but maybe not this week...
Spoke to my breast surgeon today after the results of the cytology of the bigger nodule on my arm. Appears benign but they still have no idea what it is or why it is there and not getting any smaller. So, the plan seems to be to wait a couple of weeks and then maybe do some other tests - PET? Another ultrasound to compare with first one? Lymphography? They still haven't decided. A whole group of people seem to be discussing my case now as it is baffling everyone. My surgeon even suggested I send her the paper I found on a case from 15 years ago that seems vaguely similar. Meanwhile, swelling is getting no better. What a headache. I am back at work (remotely) and would have liked to be clear of this shit by now and be able to turn my attention to other things. But no, I continue to go through appointments and tests, etc.

Lying here unable to sleep even with all the medication I take (that isn't for cancer, it's long standing depression and a neurological illness I've had for 11 years).

My appointment is on Thursday and dh is working overnight tonight as he does most Tuesdays. I'm in bed, dog is making the most of dh being gone and sleeping on the bed, as he does most Tuesdays. I'm unable to sleep, as is very abnormal for me, but my mind is racing! I know there's nothing I can do to speed up time, I just wish it was done with now. I'll know (the mdt was today). And then I'll have more of an idea of what happens next.

Just helps to write it down, thanks for listening!

Hope you got some sleep eventually @weegiemum and you have a plan soon. I normally sleep well but I woke early too thinking about the fact that I have very little income and need to find work (I’m self-employed). This is the first time really since my chemo ended late last year that I’ve felt able to start to look for new clients, but I really dislike marketing myself. My new gym has a swim clinic tonight that I’ve booked myself into so I’m looking forward to that if I’m still awake by 7.30…!

@stealthwalnut the exercise trial looks really interesting. Do you know if it’s just for people based in the NE? I’m not but would be interested in it.

im due to start 4 weeks of radiotherapy tomorrow. Absolutely dreading it. I’ve had a few weeks of normality where I’ve felt like I was leaving cancerland behind.

Today I had an appointment with an exercise physiologist who specialises in treating cancer patients. Measured my weight, hydration and body fat % and gave me a program to do at home using resistance bands and small hand weights. She’s going to send me videos of everything. Plan is 30 mins every second day plus some cardio in between then I’ll go back in a month and we can see how I’m tracking and step up the exercises. She’s recommended acupuncture for my neuropathy, apparently there is some decent evidence for it. And they offer it at the same clinic so I’ve got an appointment in a couple of weeks. As well as my feet, now my right hand is getting worse so I’m hoping it helps.

@weegiemum I hope you got some sleep eventually & the dog doesn't snore!

@isaxx I've sort of ignored the reminders at the moment, I will get there but my head is full of "x on this date, y on that date, dd1 this on x date, collect dd2 later on on that date" & it's enough alongside usual mundane stuff!

I'm off for another CT and then bloods late this afternoon. Dd1's coming with me to "handbag sit" 🤣...must remember sports bra & pj bottoms!

I'm going to nip to Superdrug & hope they have the eyebrow powder stamp a colleague has recommended in stock too, and a better eyeliner lash glue than my current one 🤞

Popped into work yesterday & discovered someone (I know exactly who it would be!) seems to have taken all my painted people from last year and some from the year before! Not a happy bunny & am now hurriedly re-painting sets needed soonest 🙄. They've even taken the Gruffalo spoons that were done on spoons specifically bought for EYFS ffs <grump>, and the blank spoons!

Hopefully, I can get in the back corridor & hunt some down in the drawers full of junk in there & be proved wrong about my hunch.

Also brought home more "to-do" than I dropped in 🙈 I've written myself a list & shall just work through the non-urgent ones as and when. Ooh, and, was complimented on my lash application again too <yay me!>

Have a good day everyone 🙂

@weegiemum I hope you got back to sleep. I think my Cape medication is making me sleepless as I haven’t had a problem up till now. I have very lurid half awake dreams. Last night I was made Chief of Euthanasia and it was my job to go round smiling and issuing yellow pills for anybody who wanted to die. I was chosen because I am kind and as I have cancer have nothing to lose. Partly I think this was a dream triggered by wicked Rob Tichenor on the Archers who may or may not be dying of a grade 4 glioblastoma and has nothing to lose behaving badly.
Round 7 is done. Three weeks to go! Plod plod plod.

@lucysmam you must be furious to have your hard work pilfered. I would be setting up a camera to guard the little people and starting a jokey campaign to have them returned. Mini hostages in EY drama. No questions asked if they are returned by Friday. Rumours of a dark force abducting them from the drawer and vast sums earned selling them on into peg person slavery. Etc

@lucysmam

That's horrible someone stole your work. Just so incredibly selfish and mean of them. I like @TopOfTheCliff ideas. I hope you get them back, it must be very upsetting.

@TopOfTheCliff

That's an interesting dream, what a job title! I used to dream loads and do lucid dreaming too, but since EC chemo my brain has sort of gone blank.

@Remaker

I am also starting acupuncture soon for neuropathy. I was told it should be Western medical acupuncture, not the traditional Chinese method for chemo neuropathy. Mine will be done by a cancer hospital pain consultant I think (or someone on her team). Good luck and do let us know how it goes.

Favourite colleague has been on a hunt & found two of the missing sets! Initials going on EVERYTHING in future 🙄 Shouldn't have to but there we go 🤷‍♀️ I'm hoping to claim myself a notice board to pin them to, so we can easily see what we want & there's a place to return them to properly.

@TopOfTheCliff you seem to be speeding through chemo now! The end is in sight...

@lucysmam glad your little folks are being rescued as we speak! My niece told me about magnetic false eyelashes - where you use a magnetic eyeliner? I’ve never used any false lashes so am interested in the most user friendly - any recommendations or are they all of a muchness?

@TopOfTheCliff yay for you, another round done! I was trying to think of something I could collect to represent each cycle done and dusted but haven’t had any brain waves yet!

@SummerCycling your protocol sounds like my planned one (4xEC, 4xT) which I thought meant the paclitaxol would take 4 weeks but no, it’s 12. We’ll see how that pans out I guess. Good luck with the acupuncture.

I have come out the other side of round 1 EC, thank goodness! Having my port put in tomorrow. Then I have a “Look good feel good” session next week before round 2.

I have just totted up how much chemo I have had and it’s
6 rounds FEC-THP plus 15 Herceptin 2020-21
8 rounds EC-T plus 8 rounds oral Capecitabine. 2022-23 ( one left to take)

total 36 rounds so far (as well as surgery x 2 and radiotherapy 2x5 sessions and 6 Zolendronic acid infusions and exemestane and a broken ankle op and I still need a new hip)

All this for two so called early breast cancers ( but aggressive little bastards unfortunately)

No wonder I’m exhausted. I’m having a duvet day today as I have just run out of energy. I’m thinking of relaunching my Instagram account to celebrate the Great Recovery 2024. Videos of me slowly getting my mojo back. I’m going to learn to Paddleboard next year, and buy a gravel bike to cycle off road. And go to some new countries I’ve never seen before. And eat more vegan food. And do wild swimming. But for now I will just veg out and snooze the day away.

@BreakfastClub80 well done with round 1. Was it what you expected? I hope the port insertion goes smoothly for you. I loved having mine instead of cannulas.

@lucysmam Hooray for Favourite Colleague. Maybe you could make a little policeman and a robber and having them battling round your little figures. I wish I was as talented as you.

@Remaker do report back on the acupuncture it sounds promising.

Feebly waves to all the lurkers and everybody else…
Top

@BreakfastClub80 can you draw an eyeliner line on your top lid? Literally just a line, no fancy, flicky, business? I've not used magnetic lashes but do draw an eyeliner line & use that as a guide. Then follow it down to the inner corner once lashes are stuck.

I quite like Ardell demi wispies lashes but have tried a fair few to get to these. Some Primarni £1 ones to practise & blue duo glue rather than the stuff in them are how I learned. Oh and a cheap liquid liner for the guide line.

I do have some magnetic ones - they are super easy, just draw the line & stick lashes to it. I've not worn those out though to see how well they hold up, the ones I bought looked more natural in the picture than they actually are 🙄

@TopOfTheCliff love the idea of "cops and robbers" 🤣

Just been to dentist and he asked me had anything changed and said no but mentioned had ct for head due to sinus issue since Jan and side of head burning and then he checked for dental things and head and neck. Said he couldn't see anything worrying or dental. He often gives me long talks on oncology, think he missed his vocation in life. He's a lovely man.

Yes I like the cops and robbers and maybe a little prison on the side. 😂Or a white board with a little painted people count.

Thanks for the eyelash tips @lucysmam , I never thought I’d be using falsies before my dd14 😂.

Enjoy your duvet day @TopOfTheCliff. Your plans for the Great Recovery 2024 sound very energetic but as you’ve managed to undergo that immense feat of treatment, I feel positive you can do it!

@Silkiebunny glad your dental check was positive.

🤣 I got my 16yo to teach me! They do feel a bit weird sometimes & they blow a bit when it's windy. Oh, and, you can sort of see them but your brain learns to ignore them like it would your own iyswim?

Thanks Breakfast Glad your first chemo is over and OK. That's a tough regime they have you on. Mine was half that 12 x weekly pax. I don't think I ever lost eyebrows or eye lashes just thinned.

Mine held on for the first 12 weeks of paclitaxel too, then eyelashes gradually came out & brows thinned, but not completely gone.

I've just spent 20 mins chuckling away to myself - the brow powder stamp was oos in the colour I wanted, so I went for the next one. Well, they were proper comedy slug brows 🤣 Dd1 has claimed it for herself, dd2 tried but it was darker on her fair, and ginger, self, than it was on me!

🤣🤣🤣 I was Googling false eyebrows earlier and came across the human hair variety - I am imagining furry caterpillars 🐛 🐛

My stomach is really hurting me today like trapped wind. They did say this would be a side effect. Also a pain between myribs and my belly button. It feels like there’s a hernia there as my upper abdomen is extended but goes down if I massage it. Surely not a hernia on top of everything? Although a hernia would be the best outcome ☹️