Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

She’s being her best. She’s turned into my supervisor. Everywhere I go. There she is. Making sure I do things properly.

@BatshitCrazyWoman Glad your bloods were okay.

@frostyfingers absolutely no need to say 'sorry' about being gloomy. I don't know about you but this whole experience has really put me off 'positivity'! I don't mean that it's not worth trying to enjoy things - I'm all for that - but I also really feel like people need to be able to express their actual feelings whatever they are and for however long it takes.

Anyone had peripheral neuropathy with chemo? Any pain relief suggestions? All down my left leg and foot. Or even help with sciatica would be a start!

Panic Yep, being positive, re-framing, affirmations, manifesting etc etc all good and helpful. But also important to feel those feelings and express them too. Positivity can be toxic.

Nurse Cats, on the other hand, look like an unequivocally good thing

Amitriptyline helps me on a night. and reflexology helps. I don’t know I try anything, keep moving also.

I have a Nurse Cat too

Chemo number 3 done, and saw the oncologist afterwards. He's told me I'm coping with this dose dense stuff well (doesn't feel like it!). Just one more of these, then weekly paclitaxel (which he assures me will be much better, and I won't be so pole axed by it).

But he wants to do an MRI and ultrasound just before my next chemo, to see what's going on. I now know the full meaning of 'scanxiety' 😬

@breastcancerpanic I agree. I don't like the 'warrior', 'fighter' and 'kicking cancer's arse' stuff either. I'm just a bloody woman, dealing with the shit life's handed to her. Have no real choice, the drugs are hopefully doing all the other stuff. I'm collateral damage, it feels like. I cried in the oncologist's appointment, saying I was finding it hard only having 5 good days a fortnight. Feel like an idiot, as I'm not one for public crying.

@BatshitCrazyWoman
I know exactly how you feel. I've done 2 out of 3 of EC. Move to weekly paclitaxol in November. Hoping that is kinder to the system. Feel very out of control not knowing my own body and what new side effect to expect each week. I wish I could be more positive and champion breast cancer awareness but I'm just not there yet. Will that ever come? Good days bad days that's where I am right now.
Sending love to all wading alongside me through this x

Oo and I do love seeing all the cat nurses! Aren't animals the best. I have a nurse golden retriever.. but he's a bit of a dope and just happy to sleep with anyone else currently napping!! 😆

I feel like I definitely need a cat nurse now!

I've promised the girls we can think about an indoor cat (or two?!) once they've shown they can keep their rooms tidy until next summer. We are moving to a new home and they will finally have their own rooms.

I have been so exhausted this week - week 7 of 12 Paclitaxel cycles. Not sure if it's due to a steroid reduction (my blood pressure was a bit high) or what.

On Monday I will hopefully have #8 and be two thirds of the way through chemo!

I am getting stressed about the lack of research into lobular breast cancer and the black hole of inadequate monitoring that one seems to go into after treatment ends. I can't believe that nobody at the hospital has even discussed recurrence with me, where breast cancer might recur or what symptoms to watch out for. It feels really poor in comparison to the excellent treatment I've had for the actual cancer. I'm stressed though. It was picked up by accident and I couldn't even feel a lump - because lobular doesn't show up as lumps. Yet it is aggressive and grade 3 pleomorphic. Will I just not know until it's come back in a more significant metastatic way?! I can't bring myself to accept that.

I do not feel in control today. I’ve cried a lot.

I’ve done 3/4 EC and have also been told that paclitaxil will be easier on me. I bloody hope so. I’ve had minimal side effects to be honest but today the fatigue and mood swings/emotions have gotten on top of me.

it’s horrible. I know it’s just the meds. But oh god I swear if one more person tries to tell me I’m doing amazing or smashing it or whatever I’ll punch them.

I’m doing my best. But I’m bored. I’m losing my mind. I’m sad. I’m trying to mask it all for the kids (5 and 7) and it’s bloody exhausting.

Oh @ememem84 I empathise. I can't remember ever crying so much. And being so angry at what my life has been reduced to now. It really is a colossal pile of shit.

I’ve been up all night I took oromorph for the pain as I think the cancer is pressing on a nerve but it didn’t help,

I have back to back appointments next week but the consultant one is before the scan so I don’t know what they can tell me. I’m terrified of what will happen if the chemo doesn’t work. I only have three to go but the cancer feels the same size. He said he will try and get me immunotherapy but if the chemo hasn’t worked why would immunotherapy?

my leg is growing again. I have an appointment with an outside OT and the library in two weeks to try and get a bus pass and blue badge but I have a feeling they will say no and now I’m thinking is there key things that I should say and do because I honestly could do with them. My council is broke so I don’t think it’s going to be easy. I’m exhausted walking anywhere. The Cotswolds were beautiful but I shan’t be rushing back. Hardly any public transport I’m so used to London 😀

@ememem84 I had EC, it’s definitely earned its nickname ‘the red devil’. I could do nothing while I had that stuff. Once I started paclitaxel it was completely different. I was still knackered but not to the same level.
You're allowed to cry, it’s bloody hard going through treatment, masking is absolutely exhausting.
The boredom is hard too - not enough energy or mindspace to read a book - I watched a lot of telly, Kevin Maclouds voice was very nap inducing!
I had therapy at the end of my treatment - it’s such an ordeal to go through.

I find I can snooze well to old episodes of QI ...

I’ve actually got myself booked into a therapy session on Friday. I was offered it as we go or at the end. Figured I’d take the time to work through things as we go. Might as well. Got nothing else to do 🤷🏻‍♀️🤣

I’m listening to a lot of audio books. Mostly read by Stephen fry.

@ememem84 Sounds like a good shout, safe space to vent and (maybe) help order your thoughts.

Audio books need to be read by a good voice, Fry would do nicely

Oooh a bit of Fry and some therapy - both of those I hope will do wonders for the soul.
Ranting away in a safe space is extremely therapeutic - my therapy lady recently was lovely. It was so good to have my feelings validated; ‘Of course you feel like that, it’s completely ok to feel the way you do’. She helped me massively. It was really helpful to see the gradual change in my mindset from sheer panic to a more calm thankfulness.
This thread helps too. Definitely not alone.

Definitely not alone and being in the company of people who get it really helps.
Been to meet my oncologist today - lovely person, glad she is not one of the “old school” types I occasionally bump into. I’m down for 12x pax weekly and then 4x EC fortnightly (although I know there can be delays). Pleased to know how many ahead although it seems a LOT!

I'm glad you like your oncologist, @dancingwhilstfacingthemusic , it's easier to have faith in the treatment if you like and trust them.

I'm day 4 post EC number 3, and am feeling... not great 😕 Hope I start perking up soon.

@BatshitCrazyWoman do you keep a diary of symptoms?
I had chemo on Fridays, Saturday was a steroid fuelled day then I’d crash on Sunday lunchtime; by Wednesday I’d start picking up. It would be the same pattern after each treatment.
A diary makes it easier to make plans and you get to know when you’ll start to feel better - you know you won’t feel like it forever!

I followed a similar pattern ast time @LemonDrizzle10 so I know I will start to pick up in a day or two. But I do feel more ill than last time. Who knows. Just need to get through the next day or two.

@BatshitCrazyWoman I did find that every EC round I had, it used to take me a day longer to feel ‘normal’. This seems to be less the case for docetaxel.

@BatshitCrazyWoman gah. Hope you’re managing to ride it. Each one is a step closer eh. I can’t believe the number of treatments I’ve got to get through but I guess it buys me a better chance of a future.

@BatshitCrazyWoman and @dancingwhilstfacingthemusic

It is a lot, and it is daunting. It helped me to split it down, divide the chemo into two, EC then pax, and then go one appointment at a time, get through this bit before thinking about the next bit.

I used so many metaphors and analogies; climbing mountains, walking through forests.
Another was, chemotherapy is like buying really expensive raffle tickets, with the possibility of an excellent prize

It was also helpful to have nice stuff - going away, seeing family and friends with the stonewall excuse of ‘not feeling up’ to anything I didn’t fancy doing. Lots of rubbishy watching, thanks to Apple, Netflix etc. Audio books as others have said

Bit of therapy helped.

Being outside every day

Accepting that it’s all crap and being unusually kind to myself. Doing it my way. Asking for help. Taking v v little notice of people I wished to take v little notice of, to the point of ‘rudeness’/ cutting off if that was what I needed then. Gracefully, gratefully accepting useful, kind support.

All boils down to: do what works for you, be v to yourself and KBO.