Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

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@KentishMama

Am laid in bed feeling a bit rough...
suddenly don't feel so bad at all!!!
That sounds horrific, you've had a right doings there, awful

So glad surgeon thinks they've got it all tho

The surgeon is my hero @Tilllly. Really cool guy. He also moved heaven and earth to get me out of there as he understood that I could not take any more ward chaos...

However you're also allowed a rough day, please get some rest!

@KentishMama
I think I've a slight cold - no temperature tho - but obviously MUCH worse than you!

Everyone say oh no poor Tilllly 😁

You rest, please don't start just doing this, or just doing that
Even if you feel ok, your body has undergone a massive trauma

That hero surgeon deserves a good outcome from a rested, recovering patient
Ok?

I'm very committed to rest and recovery. Sitting here with my first proper coffee in two weeks, Christmas biscuits, and a magazine. Hard life.

I went to bed at 6pm last night. Woke up by the doorbell at 10, is this normal? I wouldve slept on!

Must be some sleeping stuff going on, refused to wake up until now, although did watch a Dr who episode at 4 am would thoroughly recommend.
@KentishMama get those biscuits and coffee in what a marathon and then some regarding ward. Surgeon sounds like a complete keeper.
Have a friend who self discharged recently following a stroke..... Couldn't bare being treated like a fool, because couldn't speak and " no care" sadly...
@Tilllly poor Tillly , we hate snots!

Looking forward to a bacon sandwich now and hoping everyone has a reasonable day!

@EachandEveryone That's the kind of sleep that helps you heal...

@nappybrained I also got to the point where I told them that they had the choice between sending me home, or watching me walk out. They were so incredibly overstretched, and made so many unprompted mistakes, with everything. Plus, there was scaffolding outside the ward windows so I was in the complete dark (!!!!) for 11 days. Daylight deprivation is total torture. And they were downright mean to the elderly lady in the next bay, who needed support with toileting and all sorts. Horrid, horrid, horrid.

Thank you @nappybrained
The level of my suffering is sky high

@KentishMama
Are you going to complain? I'd email your MP. They're cracking with NHS issues

@Tilllly Snot is the very worst - almost impossible to survive - right up there with man flu!

I complained to the matron when there, and I may well write up the whole thing to put it on the record. But I don't have the energy now. I made sure the family of the elderly lady knew what's going on before I left, and they were grateful and I could hear them start to take action and ask for better support before I left.

@KentishMama So glad you're back, I was a little worried. We can be recovery buddies now. I too am drinking nice coffee.

My ward care was actually very good, despite them being stretched. It really is a lottery as to what you get isn't it. The only thing I could complain about was one nurse who spoke at the top of her voice to everyone, as though every patient were deaf. Even in the middle of the night. It made me wince she was so loud. But there's nothing dangerous about that, sounds like your experience was horrific. Excellent excellent new though that the operation was successful.

Anyone here been on Capecitabine? My mum has just been prescribed it as two small tumours in her lungs have started to grow a little. I'm worried about whether she'll be able to cope with the side effects as she's on her own now and nearly 80 and not very mobile.

@SewingBees I'm so glad your care was good, apart from shouty nurse! We had a couple of noisy ones who liked to turn the light on for even the smallest things at night time, but most were not too bad on that front.

@SewingBees I was on Cape for a grand total of four pointless months as it didn't do a damn thing for me. However, this drug has a side effect of hand and foot syndrome where you MUST lotion every day, twice a day, the feet and hands otherwise they become cracked, burning, painful, etc. Actually, I gave up lotioning after about 6 weeks because nothing happened. I'd worry about that for her, although at 80, and with limited mobility, she might not have a problem because the HFS is mostly caused by pressure on those places if I remember correctly. If she can handle her hands for the most part and get a bit on her feet she ought to do ok.

Taking all the pills and remembering to take them within 30 minutes of food was a pain in the ass though. It absolutely must be taken within that time frame - is she able to manage that sort of executive function?

Does she have an alternate option or is this it?

@Tilllly Im just getting over the two weeks of sinus/ear infections as a result of the super cold I got about three or four weeks ago. Its a nasty cold, and its kept me off treatment. Take care of yourself!

@HerbalRefreshmentt Thank you for the info. Mum is very good at remembering to take pills, also very good at eating (!) so I don't think the regime will be difficult for her. I'll pass on the advice about moisturising because that is something she won't think to do. She's not on her feet much and I don't know if she would be able to moisturise them but I'll check.

The thing she's most worried about is nausea/vomiting but I explained to her that there are lots of anti-emetics that she can try, and that taking them preemptively is best.

I think her regime will be two weeks on, one week off, so she'll have some recovery time. Not sure about alternatives but she trusts her oncologist and her treatment has been good so far (over 5 years now).

Sending all well wishes to @Tilllly for a quick recovery from the lurgy. It almost sounds like Manflu 😳😂

All the rest of you merely recovering from life threatening surgery spare her a thought in her suffering.

@SewingBees I expect they will give your mum a dose of Capecitabine appropriate for an eighty year old calculated for her weight and height. I found the week off no better than the weeks taking the pills as the side effects build up very slowly and don’t go away quickly either. I’ve still got peeling shiny feet seven weeks later but my energy has come back. Expect her to be very tired and needing a lot of rest. It slightly reduced my appetite but I wasn’t nauseous and I did get diarrhoea in my weeks off. I never really knew whether I needed it or whether it actually worked. Taking it was an act of faith.

Tired today after a lovely busy sociable week. I’m going into hiding now to stay germ free for Christmas. My house is going to sparkle after ten days of hermit cleaning and tidying! I might just sneak out to yoga though. I would be stir crazy otherwise.

I'm glad you appreciate the severity of my situation @TopOfTheCliff

Some would dismiss it as just a cold

Never @Tilllly 😂

@KentishMama So glad you have a good ourcome, but sorry that it was so traumatic with such a lack of care.
@Tilllly Hope you feel better soon.
@EachandEveryone I thought I was doing well sleeping for 12 hours last night. Yours is even more impressive!

Wow, that takes me back reading your posts about (EY nativity) / school plays. 💕 @lucysmam and @SewingBees

@Tilllly Very impressive your NHS hospital has that positive pressure room. I don't think they've thought of that at our local hospital. Or they haven't got any space for one, it's pretty squashed. I love your sense of humour by the way xxx

@KentishMama How brilliant about your surgeon and the very, very low Ki-67 of the tumour. But utterly horrific conditions on the ward and traumatic having the accidental rip and infection. Thank goodness you're now back home xxx

@TopOfTheCliff Lovely to hear you've enjoyed a fun sociable week. 😃It's so much fun to get out and about after having to be so cautious when immune suppressed.

@nappybrained Yes, it felt like a tough treatment plan, especially when I was having awful side effects like anaphylaxis, BP crisis, double ear infections and so on. But I'm grateful for the pCR because another year of chemo would have finished me off, I'm not even sure I'd have accepted it after how I felt on my neoadjuvant chemo. It took me ages to recover enough from surgery to start radio. But I got there and treatment finished this autumn. if the cancer returns I'll see then what treatments they offer and what I want. This time I did everything but am not the person I was prior to all of this - I have cognitive impairment and neuropathy for a start. Plus other non-related conditions. I'm trying not to think about it returning, as the thread title wisely advises. Good wishes to you on EC chemo xxx

I'm sticking to my 3 weekly swimming sessions and am now doing 32 x 25m so 800m each time. I was the only person in the pool yesterday for my first 28 lengths, then just 1 other person turned up. It was amazing! So calm. I love the machines in the gym, so want to workout using them twice a week too. I've lost motivation for the exercises at home with the bands and dumbells, not surprising after 7 months of it. With the neuropathy I'm nervous about walking and cycling... hope to change that some time. Same with dance classes which I used to love pre-pandemic and pre-cancer.

A question: can we found out what our Ki-67 is? Do they test that in breast cancer biopsies? Mine was Grade 3 and grew extremely fast, but I've never been given the Ki-67 result, just T3-P3-M2 on my report.

@SummerCycling It's a bit hit and miss with Ki-67 testing in the UK. When I had breast cancer 3 years ago, I asked them to test for it as part of the pathology stuff they did after surgery, and they didn't. Some story about my oncologist "not believing in it". It really annoyed me. However, I think that Grade 3 is pretty aggressive anyway, so that kind of sounds like chemo is on the cards for you? Ki-67 is mainly used to determine if chemo is needed for breast cancer, if I recall correctly?

I haven’t slept a wink all night despite taking a sleeping pill. I have a day out today as well. I’m going to see Saltburn at posh pictures. Looks like it will be a 6pm job tonight again

@EachandEveryone Bad nights suck. Same here, I just got really really anxious about everything and couldn't rest. I really need to caaaaaaaalm down.

Middle of the night is the worst time for worrying. I found my nights in hospital really bad. A lot of crying whilst not really sure what I was crying about.

On the plus side I've just driven for the first time in a month! Thank goodness I happen to have an automatic car otherwise I wouldn't have been able to. My back seems to have taken it ok. Had to adjust my seat down to account for the fact I suddenly have perfect lumbar posture! But given I can't walk very far it feels great to be able to get out under my own steam.

Wow, @SewingBees, out and driving! Well done, and I'm mega jealous.

I am feeling very achy and low today, so it's a classic duvet day. However, DH has decided to up the ante and whine about his very minor man flu all day, so I'm considering murder. My girlfriends have all offered alibis. But so far DH is lucky my energy levels are too low and the cat is asleep in my lap, and I wouldn't want to disturb her.

@KentishMama I was in a similar position with a very young and sprightly nurse in the hospital who was complaining about back ache to me. The third time she mentioned it I told her she should get it checked out in case it was cancer like mine. Funnily enough she didn't mention it again.