Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Hugs all round. We’ve had quite the night as my drain blocked and leaked (again!) and there was quite the party going on with my bedsheets and pillows. Fortunately the mattress and pillow protectors did the job. I’ve dug out the square protective pads (like potty training ones) to add further protection.

there is absolutely no one to contact on a Sunday from my team. My dressing is a mess and needs changing but it’ll have to wait til tomorrow - will pad it out with various clean things and contact them in the morning. Might stick a period pad inside an old vest to cope with any further “issues”.

this too will pass.

@aodirjjd they don’t get worse every time. Sometimes they are uneventful and sometimes it feels like a swarm of bees are buzzing in your bones and sometimes it just hurts! Never dull, this cancer lark!

Apt with the consultant surgeon today for an ultrasound to check progress.

tumour is looking a bit more “raggedy” and feels squishier apparently. So that’s a sign the chemo is working. The lymph nodes have shrunk too.

he can’t tell me how much it’s shrunk by % wise because of its shape - apparently it’s shaped like a flower - one main bit then blobbies off to the sides (if you can imagine that). But I’ll take “more raggedy”.

🙂

That sounds positive @ememem84 I've not really poked my 'lump' to see if anything has happened to it (only had two rounds of chemo!).

I'm feeling quite rough still after chemo on Friday - yesterday I basically had a shower, (sort of) dressed and transferred from lying in bed to lying on the sofa 😞 Was back in bed by 7 pm! Everything tastes disgusting (this wore off after a few days last time) so it's hard to find stuff to eat. Anyway, onwards! I will improve over the next day or so.

Me too! Only 2 rounds.

Sorry you’re feeling rough but the positives are you showered and out of bed and had a change of scenery.

Sending healing thoughts. X

Hugs! I hope you managed to get some support now it is the beginning of the working week again. I found the weekends a bit stressful for this reason - it was an ”A&E or nothing” situation as the breast cancer specialist nurses aren't working. My drain didn't come out but I thought I might have dislodged it. Luckily I hadn't, but I remember waiting over the weekend to find out!

I had my 6th Paclitaxel yesterday and hit the half way mark on my chemo! I do hope it is all working and doing what it is supposed to.

Because I had surgery before chemo, there will be no way to tell how effective the chemo was, which is annoying.

I am feeling ok today but had a lot of big feelings yesterday. It's felt like a bit of a slog this week. I have so much to do at work, and taking the children to and from school etc, and I can't believe I got cancer on top of everything else. My daughter asked if I would die when she is young - she is 7 now and asked if I would die when she is 17 - and it really upset me. Hopefully I am doing everything I can to reduce the chances of dying early in future, but...

@londondragonite all cleaned up but it’s not good having no “phone a friend”. The specialist hopes to get the drain out tomorrow and also to put a few ml of saline into my implant. I look like a wonky Austrian blind right now!

Keep going, all. Like you, London, I’ll have nothing to measure it by. Thoughts of doom Barbie looms strong in the small hours of the night and I imagine myself having long-term side effects for years and to be looking over my shoulders for life. Slowly getting my head around the mind games we all have to deal with. There’s a Maggie’s centre near to us that I’m going to contact to help with wellbeing.

I’m sure we are all due our Covid and flu jabs in this never ending round of fun.

I’m heartened by the news of people getting on with daily life and work around treatment.

I don't know how people are working - I'm waking up at 4 am, sleep intermittently all afternoon from about 3 pm, and it's lights out by 8.30 pm at the latest 🙄

My worry for today is Christmas, I'll be on weekly paclitaxel by then, will I be having treatment on Christmas Eve or something? Gah, fuck cancer, I want my life back 😥

Happy Birthday @ememem84 🎈 🎂🎁💐Hope it’s as good as it can be in the circumstances, and that you feel loved and supported by your nearest & dearest

I second grannygoggles with a happy birthday @ememem84. Hope it's a reasonable day whatever you get up to!
@batshitcrazywoman.. I am exactly the same. Sleep pattern gone to shit and I too will be weekly paclitaxol until early January. I got all excited thinking my '6th and final cycle' was the 23rd Dec .but as it's weekly it just keeps going into 2025! Flippin marvellous.
I am off work long term sick. They have been amazing so that's at least one less thing to worry about. Sending love from my vegetable position in front of the tele! X

Thank you @GrannyGoggles and @somewhereonthe517

been for breakfast with DH (waffles with fried chicken poached eggs and curry hollendaise….) at local beach cafe. It is grey and tempestuous here which makes the north coast of the island gloriously rough and rugged (I’m in Jersey).

DH SUPRISEd me with a beautiful watch (omega) and some other lovely little treats.

Re work. I’m off on long term sick. But this week (chemo break week) feel like I could easily go to the office and do work. But I’m in the fortunate position where I don’t have to.

for me to be in and out of work is too disruptive for both colleagues and clients. But some days I could easily log on and feel like I’m contributing.

im intending on doing some wfh after chemo is done. Even if it’s not client facing I can at least help the team by doing reviews of files or review accounts or some basic bookkeeping. That will be 2025 though.

Happy birthday @ememem84 I hope you carry on enjoying your day x

@somewhereonthe517 I think I'm carrying on until February 😬 It better be bloody working is all I can say. I'm also under my blanket in front of the TV - such an exciting life! My work are also great, thank goodness.

Happy birthday @ememem84 glad you got out and what a wonderful gift!

im sat in clinic as they can’t find the port to fill my saline implant. Having jabbed me many times I have insisted on a numbing injection. They’re now going to scan for the port and tattoo a little marker 🙄. I need to get out as it’s brow tattoo afternoon for me today. All the yays.

@ememem84 Happy Birthday! Love the sound of your breakfast... 👌

@ememem84 ooo that sounds lovely!! Very jealous you are surrounded by the sea! Very good for the soul x

Vitamin sea - good for the soul. we are so very lucky here.

I've lost loads of hair 😔 I went out for a walk today wearing my wig, and nobody seemed to be staring. I felt self-conscious though! I think I need to go back to the wig lady to get her to take some of the fullness out of it. Plus I have a small head so it's not completely flush to my head. Not sure there's much she can do about that though!

@batshitcrazywoman I've been out and about in mine too. I am very similar in that I have a small head and the wig is very full on the parting line, but I would say mine has flattened out a bit with a couple of days wear.. either that or I'm just getting more used to it. I did say to my eldest was it just me or did I look less wiggy and he agreed, so it's probably just adjusting to it! My hair is shocking underneath. I have about 15% left but expect that will be gone soon too.. when ever will it grow back is all I keep thinking..

Well done on the wig walks, that’ll be me in a few weeks too, I guess. Do you have an additional cap underneath the wig or is it comfort enough to put straight on?

I had to go back for a separate procedure for thee surgeon to locate the implant’s port yesterday. With the help of a radiographer all was good. My tattooed brows are settling so it’s a busy and productive week done. I feel shattered and am taking it in small steps.
This is all crap but there will be better times ahead.

What a bloody awful week. Gynae appointment on Monday reveals a "lesion" on my cervix that needs a biopsy and further investigation, MRI on Tuesday reveals an anomaly in my armpit which also needs further investigation and then today I was expecting to be told the time of my 1st chemo on Monday and instead was told that the plans have changed.

Now I have to wait for the biopsy & ultrasound appointments which are w/c 14th Oct and then I will go straight to surgery as soon as possible after that with chemo to follow.

So having sort of got my head round and made arrangements for chemo I'm now looking at everything happening in a completely different order, with an added thing to worry about on top. I've also had bloods taken for the genetic testing for the BRAC stuff.

I get the reasoning for the change of plans, but it really is messing with my head.

I hope everyone has as nice a weekend as possible, I'm going to try and unscramble my brain (and I have my Covid jab tomorrow) and rest, I'm so exhausted from it all.

@frostyfingers.. that truely is a shitty week. Try to take solace that they are still rolling on with a treatment plan as actions are happening even if it changes (by quite) a bit. From an outsiders view it does seem to be happening quickly. I think it just feels like you are a pawn in the game with no control over this bit and that's the bit we all hate. All you can do is look after yourself in the meantime. I have found myself watching favourite old films and lots of chocolate just trying to find a bit of joy! Sending you love.. hope you have a reasonable weekend. Xx

@frostyfingers That is a hellish week. Uncertainty and shifting of goal posts, changing of plans, loss of control, all very challenging.

Hope you can rest over the weekend, and maybe calm your mind a little.

@BatshitCrazyWoman @dancingwhilstfacingthemusic @somewhereonthe517 & others facing or in early stages of hair loss

Maybe the anticipation of hair loss and then it happening are the worst bits, a bit like waiting for results and treatment plans to land can seem harder than actually getting on with whatever unpleasant stuff we have to get on with

And those early days and weeks of extreme self consciousness before the f* response kicks in are tough. Taping can help, and some wigs can be tightened at the back. I have a big head apparently, so didn’t have that issue.

One thing I was unaware of was how tender the scalp may be when the hair is falling. I found wearing a wig really exacerbated that.

If you have a hairdresser who is willing to have a go, wigs can be trimmed, thinned, layered etc. You can also use paste and mousse to style. Or get the scissors out yourself.

DO NOT open a hot oven whilst wearing one, apparently this can wreck them.

i was stunned by the almost complete lack of information about managing hair loss, wigs etc. My clinical support consisted of being told it’s only hair, it will grow back, and don’t dye your hair whilst having chemotherapy. The last was the response when I rang in tears to ask if a v sore scalp was ‘normal’.

i did assiduously oil my scalp, and when chemo finished took supplements and used an oil both of which were marketed as supporting hair growth and health. I do not know if they helped, but my regrowth is strong, thick and healthy.

I don’t know if the following will help or enrage: my hair began to grow back before i finished the chemotherapy, (last October). In the New Year I had the post chemo crop look, which i quite liked. I was well into the f* it phase by then. And tomorrow I am having my haircut. A proper hair cut, the second or third one. You will get your hair back, solidarity in the meanwhile, from one who knows that that it is not ‘only hair’