Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

@PollyCreo I went with the ‘operation on the shoulder’ line too. No one questioned it, you don’t need to tell anyone about your private life. I’ve only told people who I know will support me and help me out.

It’s so hard knowing whom to tell and what to tell them. I’ve told my son and my sister (husband has been to all appointments with me) but am holding off telling anyone else until I have a treatment plan, and then I shall need to work it all out.
The silver lining in being unemployed is that I don’t have colleagues/bosses to tell!

I never thought about the "operation on the shoulder"! 😂 I actually have really good relationships with my colleagues (mostly big burly men!) and they were worried sick when I was off in May with my burst appendix.

@PollyCreo I’d tell them then and get them doing all your jobs for you!

I love my job though, actually used to enjoy all the heavy lifting!

I'm really struggling with being unfit, I used to run 5km every morning and go to the gym/do Pilates every evening. I know it doesn't matter in the grand scheme of things but I hate being like this 😭

@PollyThePixie Ive just replied to you by message. It’s actually nice to find someone with a child with Tourette’s- even on this thread. Just common ground and hard to find in real life. X

Today has been a real waste of a day. Didn't get up till 9, by 12 I couldn't stay awake so slept on the sofa till 2. Afternoon painkillers weren't working very well and I was feeling very cold so I went to bed to huddle up for a while at about 5. Got up again at 7, heated up and ate some soup, now I'm back in bed. Have achieved the grand sum of zero. Feel horrible.

Work (a send school with a large number of staff, most of whom I come into contact with) are going with "an operation" over the summer to explain absence in September and why we've made a lot of last min changes to a few things. Because I'm not expecting to be back as quickly as a colleague who's also got bc and had a lumpectomy as our cancers are very different.

I did tell a few people last week. Those who I felt needed to know. Partly for health and safety as some of the children need physical interventions - I had to tell a staff member I was wobbly and my boob still hurt from biopsies. Not sure why I didn't lie though. I'm not sure what would have washed.

I wish I could have spun a yarn about my treatment but my DH is a very open chatty type and his way of dealing with life’s troubles is to tell everybody everything. I find quite remote acquaintances are fully up to speed with my treatment, the side effects and how I am dealing with it because he has spilled it all out on a bike ride. It keeps him mentally sound though which must be good.

@MyNamesGaryAndImAddictedToChips dont feel bad. You are one day closer to the end of treatment. Your job is just to keep going. I’m still in my pyjamas from this morning and I don’t care! My feet hurt too much to go anywhere or do anything.

@TopOfTheCliff

I will try to look at it that way, I have to think I am one day closer to a diagnosis, maybe, or getting the surgery I need. I just feel so... blech on days like this. I don't know how to get out of my head. I feel like I need a change of scene but the 30 minutes to and from the hospital in the car on Friday was agony so I aint going anywhere!

@MyNamesGaryAndImAddictedToChips I was reading a teenage diary last week, and it said, "Dad said I couldn't waste the day doing nothing, which was a silly thing to say cos I just have". I think we need more of the teenage approach to laying around pleasing ourselves rather than thinking we have to be doing stuff all the time!

@SierraSapphire I know. I just can't explain how it makes me feel. Like I'm just existing I suppose. I've always been able to find joy in small things and that seems to be a challenge right now. Hopefully tomorrow will be better.

@MyNamesGaryAndImAddictedToChips I've been feeling like that too. I've found planning one thing, no matter how small, and doing it makes me feel like I have achieved something and quite often it gives me the drive to do something else. But even if it doesn't, I've done one thing and that stops me feeling like I've wasted my precious time.

RedRosesPinkLilies I also have a mute asd child who has massively struggled and in a 2nd year of about 10 meetings a week re them, 90% of which are pointless. NT one is doing really well. I don't think anyone would think you have it easy with stage 4 cancer and SN kids.

Yes it's odd when cancer treatment takes over. I remember at my operation they said what do you do. I said I am a cancer patient. 😂Though it's basically cancer patient plus attender of pointless meetings re DS where they pretend they have money and will help but never do but we can't get out of the system. I used to have a lovely life, my life was pretty perfect until 45. Then it's been lockdown, cancer and a secondary and la that are completely useless with DS, inpatient for him etc. Sometimes I think I am just going to go to Antarctica on my own but looked that up and requires medical. But I can dream.

Thank you! I have crohns and infliximab gave me such a long remission, then I stopped it. I've been off it for a few years now but this immunotherapy has just made my immune system rampage into the worst crohns flare for 4 years, all the other ones I had I could manage with some beige food and steroids for a few weeks or lest case scenario bowel rest and ensure drinks 🤢 for a couple of weeks when I was introducing food again, however now this is horrific.

My IBD team are the ones to suggest infliximab again and I know they've talked to my oncology team it's just the idea of taking 2 types of immunotherapy but I'm going to do it because I've had the worst weekend.

I can't do this anymore!!

I hope everyone has had an ok weekend!

@Silkierabbit I’m sorry about your child. I remember those days - endless hospital meetings (for us) - where you really have no power and are just at the mercy of the attitude/ interest/ ability of the person on the other side of the desk.

Its quite amazing, life’s capacity to get even more shit - when you’re least expecting it!

Wrt to getting through this psychologically - all I find works is to focus on what I can do. I’m lucky that my physical health isn’t yet affected- I can meet a friend for coffee, I can do a hobby or the garden.

It’s just focussing on what still feels normal. Because that is all I have now - living in the present. I think it may be a psychological defence of some sort - protecting me from reality.

I’ve just read an article about my cancer (primary peritoneal) - and it seems recurrence may well happen even next year. I’ve been kidding myself that next year (at least) should be more normal. Maybe it will…but the cloud ain’t going away. I can only live in the now and appreciate the small stuff.

@MyNamesGaryAndImAddictedToChips sorry to hear you've had a low day. I'm sure everyone on the thread can relate. I've had a few myself and absolutely hate them...I'm not good at accepting that sometimes my body just needs the rest and then my head gets in a right state to boot.

In terms of telling colleagues it's pretty much an open secret. They know why I'm off but have also been told I don't like talking about it, so I've avoided most of the daft statements and questions regarding the diagnosis. I'm close friends with a few colleagues too so did confide in them for support.

Huge hats off to those dealing with SEN as well as going through this shit show.

Nearly two weeks out of treatment and I'm starting to improve on terms of mental state and energy levels. Going away for a couple of nights next weekend to the dales, we have a beautiful place to stay and will be planning on just chilling out and taking in the scenery with the odd walk of energy levels allow.

@MyNamesGaryAndImAddictedToChips sorry to hear you've had a low day. I'm sure everyone on the thread can relate. I've had a few myself and absolutely hate them...I'm not good at accepting that sometimes my body just needs the rest and then my head gets in a right state to boot.

In terms of telling colleagues it's pretty much an open secret. They know why I'm off but have also been told I don't like talking about it, so I've avoided most of the daft statements and questions regarding the diagnosis. I'm close friends with a few colleagues too so did confide in them for support.

Huge hats off to those dealing with SEN as well as going through this shit show.

Nearly two weeks out of treatment and I'm starting to improve on terms of mental state and energy levels. Going away for a couple of nights next weekend to the dales, we have a beautiful place to stay and will be planning on just chilling out and taking in the scenery with the odd walk of energy levels allow.

I've just had to go and pick my mum up off the floor as she fell out of bed, I made sure everything was okay and then said is there anything else I can do before I go to work, and she said I could comb my hair! I got really touchy said my hair only sticks up because I've had chemo and it fell out, Then felt really bad, because I think she just forgets things! I get fed up of hair comments, a friend/acquaintance who I don't even know very well got into the car the other day and said to me "ooh you've got hair!" which seemed a bit unnecessary and just reminds me of the cancer when I haven't necessarily been thinking about it.

@CoachBeardsJane @Lisdeflores hi just caught up with your posts. I have Crohns however have had colon and rectum removed and have a stoma (rectal cancer). I've been having chemo for a cancerous lymph node in groin which hasn't worked so they're looking at surgery.They've also noted what they thought was urine on a previous pet scan has shown up again on mri/ct scan so they're thinking cancer now in perineum and would be looking at immunotherapy. I'm terrified and devastated as to what this means in real terms of survival, treatments etc. Any words of wisdom or treatment knowledge gratefully received

Thanks RedRosesPinkLilies Hoping next year will be much better for you.

Enjoy your break Clash

I loathe hair comments Sierra too. Mine is getting better now but still get it randomly sticking out then put it back 5 minutes later out again mainly at back at least. Probably need oil or something but I am always a minimal sort of person with those things. That's one thing I love about swimming my hair doesn't stick out.

Timeforchangeithink So sorry to hear that cross posted. I don't have any wisdom but I hope they can treat it well.

@Silkierabbit not at all, lots of different convos happening:)

@Timeforchangeithink I don’t have any wisdom for you but sending good wishes to you at this scary time. All we can do is take things one day at a time.
Likewise @RedRosesPinkLilies none of know what is ahead of us we have to live in the moment and enjoy small gains.

I have had my three weekly blood test and am waiting for the call with results and review. I think I need to stop being stubborn and accept I need a dose reduction of Cape. I’m okay in myself with mild nausea and diarrhoea and fatigue but my feet are blistering and my toenails falling out again. I can’t actually walk more than a few steps due to pain which means I am stuck in a chair all day. I’ve battled through everything so far at full dose but I think I’m going to have to admit defeat otherwise I won’t be able to do anything at all for three months.