Crack open the wine... it's CANCER SUPPORT THREAD 61!

[WhatWouldLeslieKnopeDo]

Some of us have been here a while and others have only just joined. If you're lurking, feel free to say hello. We are quite friendly really.

You are welcome to join us, whatever sort of cancer you have, or if you're waiting for tests to find out whether you have cancer or not (we hope not!)

Our previous thread is here. Do check it out if you're new as there's lots of useful information in the first few posts.

Best wishes to everyone who finds themselves here

nicky that sucks. It really does. That seems a bit trite. I can't really think of a word for how shit it is. Well, except shit, obviously. I hope that in time the benefits of the drain will outweigh the negatives, but I'd feel exactly the same as you. You never need to apologise here. Whinge or whatever else you need to do. Good luck for Wednesday. I really hope it's better news than you are expecting.

purple Liverpool sounds fun :) I've always wanted to go there. And yes, often the treatments make you feel worse than the cancer!

penguins how are you today? I thought mid 40s was a normal time to start menopause hopefully it turns out to be that. Any news on your colonoscopy referral yet? I hope you've not had any more weird hallucinations.

I take the Feroglobin capsules, when I remember. They're the only iron supplement that doesn't have me doubled over with stomach cramps. To be honest I'm not sure I absorb any of it with my dodgy digestive system, but at least I'm trying :)

mrsrhod I hope you're well on the way to recovery

Waving to everyone.

How are you today Leslie? Hope you and the bunnies are fine.

I feel OK at the moment, felt really bad again last night, strange seems to come in waves and always at night / early morning but on average think its improving, only slight hallucinations.

I am the same with the iron, can only take Feroglobin and take the liquid one when I remember, it stops the pain though not the flu feeling but its a start. I'm really hoping its perimenopause - menopause starts at 51 on average, peri at 47 so no idea why my doctors act like I am crazy for suggesting it and almost laugh. Though its best to have cancer tests as cancer can often be missed then as its similar symptoms quite often. I felt so relieved when people on here suggested peri even though one said you can feel like you have flu every day for 15 years! I still have to phone about the colonoscopy - part of me doesn't want to do it as I want to think all is fine (and I don't want our holiday plans to Australia stuffed) but I need it done and if it comes back clear that will be a relief.

We are good thank you. The bunnies send licks :)

Sorry you're still up and down. Do you have many days left of the antibiotics?

Oh yes definitely worth having all the cancer tests. In a way it's good your doctor is dismissing menopause as so many women's symptoms get dismissed as just being related to periods/menopause etc. Better this way round, but hopefully it'll all turn out to be something harmless (ish - I know menopause isn't much fun either!). When is your holiday to Australia? Hopefully you can get the colonoscopy sorted before that. It would an absolute nightmare of there is something wrong and you didn't know then ended up being taken ill on the other side of the world. But I do understand how you feel. Especially when you've already had all sorts of tests/procedures

Thanks to the bunnies for the licks 🐰🐇

14 days of double antibiotics, started on Wednesday, brain isn't currently functioning enough to work out days left 😳

I am glad my doctor is running tests. Australia isn't until mid August but we are staying somewhere you can cuddle tree kangaroos and part of me thinks that's worth risking death for though my husband tells me off for that and he's right. If colonoscopy is clear should be no issue going, may need other surgery but its not urgent. If its not clear hope they can work round it though not the easiest thing to work round but unless I am risking death I want us to go. My DS especially is so excited.

Err about 10 days left then. That's alright then, still plenty of time for them to help :) I know it's difficult but try not to get ahead of yourself too much. They're often able to work around holidays if treatment is needed, but hopefully the colonoscopy will be clear and you can enjoy your holiday. It sounds fantastic!

Nicky so sorry you're feeling ill and down. I will keep everything crossed for you for your result on Wednesday. I was expecting more bad news this time (it couldn't have got much worse tbh) and instead got good news - I am very mixed up.

Leslie I hope you're enjoying a leisurely Easter with the bunnies - plus lots of chocolate of course.

Penguins hope the hallucinations calm down a bit!

Knackered today - 6 hours driving through traffic and heavy rain yesterday to collect DD3 from Exeter. Have just braved Sainsbury's, which was mad and packed. The queues to get out of the car park were horrendous.

I did manage to buy some crop tops though - my skin is really dry and chafed around my bra lines, caused by putting on too much weight, being over-endowed and bras being too small I think. I haven't managed to wear a bra for a week but these crop tops will be a good substitute.

I've swapped to Sainsbury's crop tops too! During chemo I feel really bruised and sore all over, so my normal bras really hurt. These are much more comfortable. I hope they'll be comfortable for you too :)

I hope you have a chance to rest after yesterday's driving and today's shopping ordeal!

Plenty of chocolate here though I don't have much of a sweet tooth anymore. I'm more excited about having lots of cheese!

Enjoy your Easter egg hunt

nicky I'm really sorry you have been feeling so poorly and low. I hope things go as well as can be expected with your CT results. Will be thinking about you on Weds.

purple good to hear to you got your insurance money. Definitely consider Liverpool - it's some great museums and galleries to see, and lots of lovely bars and restaurants in which to stop and catch your breath in between them. And the nearby coast is lovely as well.

good luck zebra for your forthcoming op. I hope your DD is recovering well. TQ I hope you're putting your feet up tonight.

Hope everyone is well-stocked with chocolate/hot cross buns/gin or whatever your Easter treat of choice is .

Turnofthescrew that's what we thought when we looked at Liverpool, although we only have a couple of days off work so I think we're going to save Liverpool for when we have a full week off as I don't think we'd manage to have a decent look around in only a couple of days. We may go to York instead if we actually manage to agree on somewhere

TQ and Leslie I don't know if you've heard of moo goo for sore skin, the lady at the look good feel better workshop said it was really good for people having cancer treatment

Hi everyone and thanks for all your kind and supportive thoughts. I got given some ‘udderly smooth’ cream - a bit like the moo goo that purple mentioned and it was really good. TQ I got told that Caelyx may give a rash in skin folds that get too warm so onc told me to keep my underboobs chilly - if that helps at all! The soft bras sound good too. Hope your girls enjoy their Easter Egg hunt; my kids are having one with their cousins today. Leslie I saw an ad for a Branston Easter egg made of cheddar and Brie with a pickle inner. It looked delicious but I fear it might be an April 1 joke. purple - i’m on cycle 3 of 6 of this chemo. It’s fourth line, after carbo taxol, carbo gem and weekly taxol. I found the first three types fairly ok which is maybe why i’m disappointed that this one has knocked me for 6 a bit. Probably also that the cumulative load of the previous treatments is having an effect too. I’m always surprised by how much there is to do in Liverpool - never been to York but have heard it is lovely. Happy Easter y’all xx

Hi leslie thanks for asking, I've just been lying low to recover from the surgery.

nicky I was sorry to read his low you are feeling but it's not surprising. Moan away, it's what this place is for, I just wish you didn't need to.

I've had a lovely couple of weeks in comfy clothes with no tight waistbands and no bras, bliss. I'm seriously considering looking for some nice non wired ones when I'm back in shopping mode.

purple, York is lovely, we are fairly local and think we're going to have a day there for my birthday next week. A few days ago I didn't think I'd manage it but apart from one scar pulling I'm feeling much better suddenly.

leslie I hope you're enjoying your cheese. Dh got me a rather posh Easter egg this year and dropped it on the kitchen floor so I was presented with a nice box and lots of broken chocolate, poor thing.

I'm recovering very well apart from a bladder issue. Has anyone else experienced this? I can wee perfectly well, all normal but I have lost feeling in my bladder so I can't tell when it's full. I didn't realise for a couple of days post surgery as everything felt strange but it's become apparent that I just can't feel when I need to wee. I go regularly because I know I need to not because my bladder feels full. I'm going to have to contact the surgeon on Tuesday but I've no idea what he'll say or what can be done. I hope I haven't gone through all this only to be left with a permanent bladder problem.

Happy Easter everyone!

Here’s to many more of them for us all, and never feeling too queasy for chocolate

🐣🐇🐰 Happy Easter 🐣🐰🐇

When I typed this originally 💊 appeared 😉

mrsrhod I'm not sure this is what you want to hear, but obviously no point in me lying. My bladder has never been the same since my original surgery. I had the loss of sensation and also urine retention and, I'm not really sure how to describe it, but sort of loss of muscle strength. They've all improved a lot. But still troublesome from time to time. I had a cystoscopy to check it out. But they couldn't find anything wrong. My surgeon said my bladder probably moved position causing all the problems. I did also have some damage to my pudendal nerve, which may have contributed. Anyway, it's not perfect but it has improved a lot. Hopefully yours will completely fix itself once you've healed from the surgery, but definitely mention it as there might be something they can do to help

Hi leslie, sorry to hear you have this issue too but thanks for answering. I have no pain and I don't think I have retention but I am missing the usual feeling you get when your bladder is full. I can't believe it after such a relatively short operation. It's really very strange and I've never heard of it before.

Thanks Purple and Nicky for the Moo Goo recommendation. I've just checked stockists and fortunately my local health food shop stocks it so I'll be down there tomorrow. Not entirely sure how one is supposed to keep one's under-boob area cool though!

mrsrhod I wonder if your bladder got moved about a bit too during the op. Hopefully it'll go back to normal soon.

Twitter/nicky is it the actual warmth that causes the rash, or is it from sweat? If sweat then maybe the crop top bras will help as they're probably more absorbent than normal bras. Even a sports bra maybe if it's bad as they wick sweat away?

nicky intriguing. I saw a "spreadable cheese" Easter egg. It wasn't a joke, but didn't sound very appetising. Luckily I was at a family gathering yesterday and there was a cheese board at dinner time. So I pigged out on that! I hope you've had plenty of cheese

I'm a bit uncomfortable today so I'm wearing the most comfortable trousers ever. They're made of bamboo and are all stretchy.

Ah well. I am having a PET scan this week so that should shed some light either way. I'm not even allowed to knit for 24 hours beforehand

Waving to everyone. I hope you all had a good Easter if you celebrate it I hope the coming week brings good news, improving symptoms and more energy all round!

Hi Leslie I don't know if it's sweat or warmth that causes the rash. tbh I don't have a big rash but I do have skin discolouration and chafing. The crop tops are proving so much more comfortable than bras! I don't think I'll ever go back...

Good luck with your PET scan. I've just looked it up online. Looks like a very long CT scan.... I suspect you'll be bored. Weird that you can't knit beforehand. I'm posting my 1st 20 squares tomorrow.

Nicky I think I overdid the chocolate for the DDs... but they enjoyed the hunt though only one of them is under 20... I did my usual party trick of leaving one egg under the bed (I do this every Christmas) so Dd1's boyfriend was fruitlessly searching for ages...

MrsR could it be nerve bruising after the op? I assume you'll be ringing the hospital tomorrow?

I don't leave eggs under the bed every Christmas! I tend to hide presents in various odd places and then forget what I've bought and where I've hidden things.

You're not allowed to do any exercise (though this includes knitting and holding a baby!) for 24 hours as the test uses radioactive sugar so they don't want your muscles taking it up and messing up the images. The scan itself didn't take too long last time. Most of the time is spent resting beforehand so the radioactive sugar can circulate round the body.

I'm glad they enjoyed the Easter egg hunt! (I hope the blufr8end got his egg eventually ) Ours went a bit wrong as my younger cousins wrote the clues and a couple got mixed up... all found in the end though.

Oops that was meant to be an Easter smile

Ohhhhh. I thought you meant you'd deliberately left it there!

Leslie You should never underestimate the dangers of knitting 😱 I remember doing IVF and it said no makeup. I don't wear makeup but asked the surgeon what danger it posed and he was amazed they told people no makeup. I also keep getting letters saying bring a dressing gown, arrive and they say here's a dressing gown - how many dressing gowns does a person need 😃 Hope the scan goes well. Glad you've had a good Easter.

TQ Glad you've had a good Easter. At first I thought you were planning on going out in just a crop top!

I would phone the hospital MrsR though hopefully its just a slow adjustment.

No more hallucinations and managed to wfh a bit though woken up at 6am asking if a friends Dad had replied to a playdate that morning. 😂

Hello everyone. Dropping back in and will do my best to catch up - for now I really want a cheddar and Branston Easter egg . I was in a bit of a mood for a while and cut myself off a bit from everything. Still in hospital - will be four weeks in Friday . Got picc line fitted for tpn and am on that. Fingers crossed though, intestines are working again - I can eat - so once I prove I can get enough calories in they may let me out. Eveything may just shut down again as I have an adhesion which is twisting and creating the blockage but I am hoping for third time lucky. Getting fed up of hospital policies - had five hour battle this morning to be disconnected from tpn to have a shower . I'm not usually a difficult patient I promise!

Hello Tayto 4 weeks in hospital! Gosh you must be going stir crazy. I understand the need to cut yourself off for a bit. I hope your adhesion behaves itself and you can get out soon.

Penguins no-one would want to see me in just a crop top.

Nicky thinking of you today.

Leslie good luck with the PET scan

I bought the Moo Goo yesterday - I'll let you know how I get on with it. I bought some for my DD's eczema too.