CANCER SUPPORT THREAD 66 for those with cancer or awaiting cancer test results. Rant, rave, laugh, cry, joke, scream - whatever gets you through the day.

[TwitterQueen1]

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you have a loved one with cancer you can get support on a different thread here

For old and new posters it's very helpful if you (re)introduce yourself in your first post with a summary of your diagnosis (chemo brain is a real thing and my memory isn't what it used to be!).

The slipper boots I’ve got are M&S, they are a cable knit and so comfy on sore feet. Fingers crossed that you get some nice slippers.

Hi All

Just wanted to say thank you for the kindness and support shown to me when I was really struggling. The good news for me is that I don't have oesophageal cancer. The less good news is that I appear to have something called esinphillic oesophagitis. Not entirely sure what that it but it's an auto immune disorder of some sort. Waiting for another appointment to have various biopsies and test done. Have been told that a food exclusion diet is used to see if triggers can be identified.
I still have pain on eating and so not very much is going down at the moment but it's easier to deal with knowing what's going on.
I wish you all the very best and sending you the most unmumset of hugs as you face the reality of and difficulty living with your cancer diagnosis.
Thank you

Oh I am liking the cordial suggestions - busy making a list here!
Ranout I was the one drooling over a new car - how exciting you are getting one! What did you go for?

I have the cosiest pair of sheepskin ballet slippers from FatFace but I have completely wither soles through and cannot find worthy replacements
I did treat myself to a new pair of slipper boots from next but they're very man made. Pretty silver sequins on them though ...

Good morning :)

Just had my bloods taken and my dad has gone to collect my tablets. Then I can decide whether to start this Monday or wait until next week. I think sooner is better given the timescales! I don't like feeling like I'm not doing anything.

I'm on a high dose of steroids to see if that helps my breathing, and it's certainly "helping" my appetite

I drink lots of squash. Either blackcurrant (Belvoir blackcurrant and blueberry is nice, or Sainsbury's blackcurrant cordial) or lemon barley water. I don't like all the sugar free squashes. They make my teeth feel funny plus I was told to drink sugary drinks because of my ileostomy, so it's a bit of a pain now that it's so hard to find them!

Party in our slippers sounds excellent

I don't wear my PJs outside, but I have some very comfortable bamboo "loungewear", which is the next step up from PJs.

Sorry to hear you're struggling so much Pandora

I hope everyone has a reasonable day.

Sorry, I cross-posted with you LadyMaryC. I'm glad that it's not cancer, but autoimmune conditions are no fun either. Good luck with the further tests and I hope that they can get you more comfortable soon

Afternoon ladies.
Good to hear from you @Pandoraslastchance I'm sorry you've been having such a shit time. Tell the nurse to do one next time she feels like commenting. Ask for someone else!
@KnickerBockerGlooooory I've gone all out and am picking up a mini convertible on Monday! Really is the weather for it! It will be a nice distraction before chemo on Tuesday!
Ladies I'm totally up for a pj party. I could also do with some new slippers! The other year my DH bought me some mahabis. Check them out as they have detachable soles for going outside! We may have the new ideal footwear there! Think I may need to invest in another pair. They lasted me about 18 months which is a long time for me and slippers, I'm not sure what that says about the state of my feet!!
Right, over and out for today I have family visiting and I want to squeeze a nap in before they all descend!

Enjoy your nap and time with your family ranout :)

Ooh nice ranout. I'm after a mini clubman. A blue one

ladymaryc, glad you came back with an update. I wondered how you were getting on. Best wishes for your treatment.
whatwouldleslieknopedo
ranout I have a cooper s convertible which I’ve had for a few years. I’m happy to go out in it with the roof down even on a not so warm day. A crisp cold day with the sun out and the heated seats on blows the cobwebs away. DH usually not happy to accompany me on a day like that though! You’ll love it!
I’ve taken my dressings off this morning and managed to have a proper shower which is a relief. Probably a relief to those around me too 😉 although I have managed some half hearted washes.

Missed that about the car ranout - very cool! You can drive us to the party

Lots of people seem to do car shopping after a cancer diagnosis! Quite a few friends did. I don't drive, but I helped my mum choose a tiny car (Fiat 500). Mostly because she was getting so stressed squeezing into hospital parking spaces. It's rather fun too.

Gin good news about the dressings and shower

I'm still too weak to shower but using some special foam body wash stuff my sister bought me. I'm constantly asking my mum if I smell. Hopefully she's not lying when she says no!

It's called Nilaqua if anyone else finds themselves in a similar situation.

Well done gin I am very happy that I can wallow in the bath again- I definitely stank after a week of flannel washes!

Question re nails - this time of year I treat myself to a shellac manicure every 2-3 weeks. Should I stop? I think I've seen mention of dark colours being better? Currently they are magenta 😊

Argh! The community mental health team have just cancelled my appointment. I was needing my k meds increasing to keep me sane and a letter supporting my pip.

It's going to be months before I will be seen. No other gp will adjust my meds as I'm under cmht.

Honestly I could cry. I need to schedule my mental health better.

Good to hear from you Pandora although sorry your feeling so rubbish. I wish people could understand just how bad chemo makes you feel and walking up stairs is such an effort never mind anything else

LadyMary I'm glad it's not cancer but it still doesn't sound like fun. I hope you get sorted soon

I should be coming home tomorrow with a bit of luck. It turns out I don't have a blockage but I do have something I can't remember the name of it's basically where your bowels go into shock and stop working which they think may be caused by the chemo. My stoma unblocked itself in spectacular fashion last night so it's definitely working again

I'm sure you don't smell Leslie I'm going to order some of that body wash. I don't have the energy to sit and have a shower while I'm in hospital

Dark colours (e.g. navy, black) can help if you're having tax KBG. I say treat yourself anyway assuming they're happy to do it. I think I read somewhere you shouldn't have your cuticles trimmed/poked as that can be an infection risk. But I have never had a manicure so I didn't take much notice. You could check with your specialist nurse if you're worried.

purple paralytic ileus? Nasty. I hope the body wash helps. You just rub it on then wipe off with a towel/flannel. No balancing a bowl of water on your bed/hospital table and trying not to get it everywhere!

pandora that sounds very tough. I have no useful suggestions. Do they know your situation? It's awful that they can just cancel and leave you waiting for months.

Yes that's what it was Leslie! Bloody painful, I thought my stomach was going to explode. They thought it may have been adhesions and I remember thinking poor Leslie they really do hurt

TQ I've just seen your update, brilliant that the balls now rolling. Hopefully you aren't waiting too long for the scans

KBG I am the Shellac queen! I haven’t had naked nails for about 10 years! I’ve been told it’s totally fine (and actually a good thing if I go for dark colours) so long as you can trust them not to be poking around in your cuticles and to use sterilised tools. My lady is amazing and it really cheers me up to have pretty nails.

Sorry to be inappropriate but Paralytic Ilius sounds like a Jilly Cooper nickname for a dipsomaniac erudite/Latinate vicar. And I suppose he’d be way more welcome at a party. I’m already on the sofa for Pointless. Then early bath. before return to sofa in —pyjamas— loungewear and slippers.

Rang the hospital today, to check that the MRI would be read in time for appt - the specialist nurse in that department is lovely, perfectly on top of it all, and told me that my innards were inspected and discussed today. And that there’s nothing to worry about - which I take to mean that the cyst has continued to shrink and liver/spleen are normal size. So all that remains is to establish if they think my deranged poo is side effect of cancer drug or summat else

That sounds like good news then iVampire :) I'm glad you've got a helpful nurse. Enjoy your pyjama loungewear evening. Sounds very cosy. I'm looking forward to a film night (Mamma Mia 2) after having to cancel more exciting plans.

purple yes, the pain is actually quite similar at times. But paralytic ileus was much more intense. I'm glad you're on the mend

Very glamorous Namechange!

I'm having horrid back spasms every so often, mostly when I change position. They've not seen anything nasty on my scans so I think it's muscular. Probably from sitting/sleeping weirdly and barely moving! They pass quite quickly. I'm glad to have my new heat pad though :)

I’ve been lucky - both my main specialist leukaemia nurse and this colorectal one have been brilliant. Even when I’m wondering if something is too small to bother them with, they’ve been great.

GP has been good too - I had to ring up to get doctor’s sign off for pneumonia jab (too young for regular programme, but recommended by haem team) and they stayed on phone to cover all sorts of wider well-being things

PJ's and slippers here too. Had my MRI today and I did it! I took 2 diazepam tablets but I don't think they did much. They didn't tape anything to my nipples. It wasn't a really narrow one and DH held my hand throughout. I'm really relieved that it's done, I think I was more worried about that than the surgery!

Leslie my back and neck spasms are still going- and same it seems to be when I’ve been sat for a while (mostly driving or TV) and then move. I can’t seem to get anyone in hospital to worry about them but they are quite intense. Am stopping myself googling to see what terrible things it could be.

Went to the Maggies centre for the first time today (only 14 months after diagnosis ) and everyone was so lovely. Why didn’t I go before?

Oh and mega-lolz at me being glamorous! So so far from it!

Caz well done! So good to get something that was worrying you so much behind you.