Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

I think it's a balance @SewingBees
Acceptance to a point yes, but also fighting against it.

I ricochet btwn the two still. I go from wildly positive that I've got years and I can manage the symptoms easily like nothing is happening, to fuck it might as well just give in

Midway is probably more helpful!

Misery guts today
Had a good day yesterday, out and about

In pain today. Seem to be constipated again despite the laxido - think it's the ondansetron but I feel too sick not to take it
And my chest is awful this morning
Had morphine and paracetamol so am at max now

Didn't even get to church, had things to do but am dozing in bed being mangy

If your body is telling you to lie in bed and relax, listen to it @Tillly. Sorry you're feeling rough - hopefully the rough days will lessen and the good days increase.

I'm so similar, my default position is ridiculously optimistic so I don't take bad news well.

Sorry to hear you're having a rough day. I spent all day in bed yesterday, absolutely wiped out, slept for hours. Today is the opposite and I have more stamina than I've had since October before my spine collapsed. I was able to stand for long enough to make 6 pancakes, and I even did a bit of cleaning. Feels like good progress, though I'm back in bed now recovering/hiding from the downstairs chaos.

Pancakes may become my unit of measurement for getting back to 'normal', whatever that turns out to be!

@SewingBees pancakes are a brilliant unit of measurement for anything 😁

Sorry you're feeling rubbish @Tilllly💐 Snuggled up in bed seems a good place to spend Sunday, to me. I'm in my slob clothes, at the table, painting & ignoring most things 😊 There are more pressing things to be done but I cba so it's all been shoved to do in the week 🤷‍♀️

@SewingBees I'm usually quite the pessimist but seem to have had a "fuck it, what will happen, will happen" moment & mindset lately. Tbf, it's been quite nice. Pancakes are definitely a good unit of measurement 😋

It must be a day for slobbing. After a busy day yesterday I had great plans for today but ended up sleeping all morning. Ah well I probably needed the rest! I bought a great fleecy snug outfit in a sale and it’s great. House temp 11 degrees and I’m toasty. Now making over optimistic lists of what’s to be done before surgery in 12 days. I have a CT scan on Thursday to programme the robots!
I am not thinking much about cancer, because it’s too hard. I’m concentrating on the tasks to be done and practical things. It’s all shut away in a box.

I think that's very practical @TopOfTheCliff

I like to have a list and feel I've achieved something

You go, girl 💪🏻

@TopOfTheCliff I like concentrating on the things to be done too, although they don't always get done.

Having one plug socket between washer and dryer is annoying me today. Dryer is still going, whereas usually washing is done & sorted early in the day 🙄

Hey all, sorry to hear about everyone's struggles this weekend. DS1 has popped home for the weekend so despite it being my chemo week I've forced myself out of bed to the shops with him yesterday and today, thanks to my postponed CT scan, we all had a fabulous Sunday roast at a local pub . Ubered there but managed a wobbly walk back.

On the subject of CT scans, this is my big one which kind of decides my future (if Basingstoke will accept me this time for cytoreductive surgery and HIPEC) do I'm having an oral contrast as well as the IV one. Whilst I have no issues taking eleventybillion tablets as big as my head, I am a total wuss when it comes to drinking stuff so am dreading it. Does anyone have any idea what volume of liquid I'll have to drink?

First day back at work tomorroe after a year. I’m terrified that they will ask me questions. I mean my friends won’t as they’ve been through it with me but just the fact that my hair is cropped is going to get people wondering.

@TwigTheWonderKid
You're going to have to dumb that down for me...?

@EachandEveryone
You need a couple of phrases to deflect - use one then ask the noseyparker a question, people like talking about themselves

Honestly, it won't be as bad as you expect

@EachandEveryone if it helps, I work with our very youngest dc's (3-5 yo) and not one has asked questions, & they have no filter whatsoever. One did suddenly pipe up with "you have hair today!", in a rather surprised tone, while we were sat on the carpet on Friday, but that's it 🤣 The only question I've had is from one of my fave y2's who always comes for a cuddle & told me he's missed me while stroking what hair there was at the time.

I'd hope the grown ups were polite enough to just crack on with their jobs & wait for you to comment (or not). I made a point of "I'm the one with the post chemo mop" in our Whatsapp when new staff popped up saying hello - seems to have warded off awkwardness & they chat the same as the others who knew.

Which bit @Tilllly ?

Cytoreductive surgery and HIPEC
What is it, what does it mean for you?

(Sorry!)

@EachandEveryone I can understand you feeling apprehensive. When you say 'people' do you mean colleagues? Do they not know why you've been off? (Sorry, I don't know what your job is.)

I've been off for two months now and I can't imagine going back for a while yet. I'm physically not capable, but I'm definitely not mentally strong enough. I manage a small team of strong personalities. I like them a lot, even the tricky buggers, but I need to be mentally strong to cope with them. One of them starts every email "I hope you are well...". I had a word with him about that when going through chemo last time and he does seem to have stopped. Another is nearing retirement and bangs on every day about how old he feels and wonders how many years of retirement he'll have. His parents died in their 60s so I can understand his position, but as I'm very unlikely to see retirement it's very insensitive for him to say these things in my presence and I have to swallow the temptation to say something cutting.

When I returned with chemo hair no-one mentioned it, other than those who knew what I'd been off work for. I think most people understand that it's not something they should bring up unless you do. Hopefully tomorrow will be a positive experience, but we're here for you if it's not and you need to offload xx

Hi @TwigTheWonderKid , just reading through this thread and noticed your comments about HIPEC and cytoreductive surgery. My husband was also recently diagnosed with a rare cancer that originated in the appendix. It has spread to the peritoneum however he originally received a bowel cancer diagnosis. I'd be really interested to hear if you are accepted for surgery and hope that your scan goes well.

Hi @Queenkong72 that's the cancer I have plus spread to colon and ovaries.

I was rejected for this procedure when diagnosed in the summer because of the extent of the disease. Have just completed 8 rounds of CAPOX chemo. My mid chemo scan in October showed a reduction so am hoping it's continued but obviously have no idea. And I have been given no idea of what my options might be (if any) if they say no.

Who was your husband's diagnosis and what has he been told about treatment options?

Good luck with the return to work, @EachandEveryone! May it be utterly unremarkable and free from dumb comments.

@SewingBees I've been wondering about going back to work... I'm currently signed off until early Feb, at which point I've been off for two months. I could probably get another month off quite easily, but I'm also getting terribly bored. I work from home, so it's just a case of sitting at my desk and logging on to Zoom for much of the day. I can definitely get out of business travel fit a few months.
However, I manage a large, globally dispersed team, and my role is very fast paced. I can't see myself working my normal hours of 9 am to 7 pm again. (I usually try to get away by 6 pm, and never actually manage.) I know that my direct reports are having to pick up a lot of work while I'm out, on top of their already busy jobs, so I'm feeling quite guilty and somewhat disloyal to them for not hurrying back to pick up the reins again!

@Tilllly it's called the Mother of All Surgeries. They basically take out all tumours and affected organs so it can be the equivalent of up to 10 surgeries in one go. Then they scrape all the cancerous mucus out with wires and conclude by a two hour washing out of the abdominal cavity with hot chemotherapy. Whole thing can take up to 16 hours...

And you're presumably home same day in time for dinner?
Sounds a little like having your tonsils out

<<<faints quietly>>>

@KentishMama
Which has reminded me to request another sick note - my 3m is up tomorrow

I know exactly how you feel but you're doing no one any favours by rushing back. My team have been amazing but I know they're struggling- and won't even have a quick phone call about work with me, which is annoying because I can help!

See what doctor says
And when you go back, it'll have to be slow and steady

Yeah @Tilllly I'd expect I could drive myself home in time for a late supper.

@TwigTheWonderKid Thanks for taking the time to reply; he was originally diagnosed with stage 3 colon cancer but after surgery we found out that it was actually a very rare goblet cell cancer that had originated in the appendix. 13 lymph nodes were found to be cancerous and there are 2 tumour deposits also in the stomach lining. He has been offered 6 months of Folfox. He's a few months in and is finding it very challenging. His oncologist hasn't actually mentioned HIPEC to us however I raised it with her after reading about it's success first on the Bowel Cancer forum and also after doing my own research on cancers that originate in the appendix. I've no idea at the moment if he will be considered for it at a later stage.

Sorry to hear that you are also undergoing this rare condition but good to talk to someone else in a similar situation as it's so difficult to find out any information. Please keep us posted.