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

[LemonDrizzle10]

New thread

I don't really have a choice so just got to get on with it!

Well, had my first day of TC chemo. Cold capped. Semi fasted for the past two days and today (eating only vegetable soups, fresh made smoothie, apples, a cracker a day - with 16 hours a day of nothing, though not during chemo itself, when I had a soup and one piece of falafel, and now had soup for dinner and am about to crack and eat some crackers - don'tthink I can manage going to bed hungry tonight). All desperate attempts to be more in control of side effects. So far (5 hours after) I am feeling OK. Am I going to be hit with side effects later? For those of you who have had this regimen, when did side effects start and how bad did they get?

Had an appointment with the haematology consultant today. My histology results are back and they basically tell us nothing. 😭There were problems getting good biopsies when I was supposed to have the surgery that couldn't be completed, because of surprise adhesions. Either way, it looks like I will have to go back for round 2, with one, maybe two bowel resections, hysterectomy, both ovaries and fallopian tubes and part of my omentum removed.

So still may have cancer, or not. Ho hum.

Evening all, I hope you're all having an alright evening? I haven't caught up yet - I did try earlier but struggled to concentrate today.

My brain is officially mush today! I've forgotten that many , ^really quite basic, things!

I've just had a shower- forgot to take off eye make up so now have panda eyes, forgot turn off lights, forgot my dressing gown, forgot my tablets before sitting down, remembered I forgot Boyes in town for sheets of felt for a project 🙄 & that's just in half an hour or so ffs.

Also forgot to pop in to see my friend as we got off the bus from town, to swap the day we're going for brekky. Then forgot to text her the same. Forgot to text my dad I'm home safe. It just goes on and on and on today. I'm laughing at myself as I go - it's odd!.

I fasted 48 hours before and 24 after and had carboplatin and paclitaxel @isaxx - I
felt sick on the actual day, then fine after that and vaguely achy and tired on about day 3 and 4 but only like after a gym workout. I definitely think it helped with the side-effects, I didn't have any days when I was too ill to go about my normal business, although not as energetic as usual for the first week after. I ate completely normally the rest of the time.

Oh @MyNamesGaryAndImAddictedToChips how utterly frustrating for you. You must so very fed up.

@TwigTheWonderKid I am, yes, but at the same time I am very glad to have the heamatologist I have been seeing in my corner. He seems like one of the truly good guys and seems almost more frustrated than I am. I don't feel alone with this knowing he is on the case. (I have seen a lot of awful or indifferent Drs in my family's many dealings with the world of medicine.)

Also, I am finding the thought of this op a bit daunting. Although I am often in so much pain now, I really would like to get it sorted.

Been quite a week here. We told our boys about my new diagnosis on Sunday evening, which was obviously not much fun. I was quite proud of myself for being really honest with them about how serious it is, I thought it was important I wasn't in any way ambiguous. Also had to tell them they can't go on the holiday they've been looking forward to because I can't now be insured. Then spent the rest of the week trying to sort out a UK alternative holiday.

Yesterday had a tele consultant with a urology consultant who brilliantly didn't know why he was calling me! I had to read him the referral letter the Colorectal surgeon had sent him, then he made wait for ages whilst he looked at my scans. One of my kidneys is a bit swollen because a tumour is squashing it so they want to put a stent in. I'm hoping that's not going to delay the start of chemo ( if I can ever decide which one to have...)

But in better news, last night I had a "last hurrah" at the pub with 14 of my girl friends. Most of my local friends already know each other but there are 3 or 4 who don't and for some reason it was really important for me to get them all together and for them to meet each other. I know they are all going to form an amazing support team for our family and I'm so lucky to have them all in my life. It was such a lovely evening.

Hoping you get a good nights sleep @isaxx

@MyNamesGaryAndImAddictedToChips that must be very tough to get your head around.

I'm so glad that was a lovely evening TwigTheWonderKid - it sounds it!

Where have you booked for holiday instead?

@Ikeameatballlunch we were supposed to be going to the Canary Islands but are now going to Cornwall.

I just wanted to say to you all you are so blinking amazing!

@isaxx I've had 2 out of 4 TC cycles so far and both times have had a similar timescale for side effects (which have been not nearly as bad as I expected). D1 (day of chemo) fine, maybe a bit hyper due to the steroids; D2,3 flushed face and chest which calmed down with anti-histamines; D4-8 tastebuds massively affected, white tongue, everything tastes weird/awful, very little appetite and felt quite wiped out, needed a snooze in the afternoons; D6,7 mild diarrhoea; D9 feeling much better, taste and appetite starting to come back; D10-21 feeling pretty normal, tastebuds and appetite all back to normal. I took all my anti-nausea tablets and didn't feel sick at all. Some other folk I know waited until they felt ill and then found it hard to get their nausea under control. Oh, and my hair was doing ok until about D17 cycle 1 and then it started shedding massively for about a week but since then it has calmed down a lot...I'm waiting to see if there is another big shed across the next couple of days as I'm now D17 cycle 2.

@lucysmam it is quite normal! Just roll with it and tell the family to treat you gently. My DH gets a bit antsy when he has to repeat things three times because I forgot them. But he does it too and he doesn’t have the excuse of cancer or chemotherapy. Hope you aren’t too frustrated by the brain fog.

@MyNamesGaryAndImAddictedToChips that’s a lot to go through. Have you got long to wait for surgery?

I’ve been a Prima Donna today and DH has cooked a delicious spaghetti carbonara tonight. I might take a while to recover if he looks after me too well!
Feet are glowing but not painful now I’ve rested them. Tomorrow a lovely young friend of mine is getting married. The weather is going to be atrocious but I really want to go. The wedding choral music is a feast of Rutter’s loveliest pieces.

@nappybrained you will be amazing too. It’s the only way to get through.

@lucysmam it took me 4 attempts to remember how to put a duvet cover on today. And I haven't even started my chemo yet!

Ah, thank you both, that's reassuring! I should really write things down even if I'm out and about, or actually tell someone else which helps. I was crossing the road with dd1 when I forgot to go in and see my friend 🤷‍♀️

@TopOfTheCliff it's made me laugh at myself more than anything - it's all daft little things, mostly they don't make much odds, and I do eventually remember so I can either do it then or write it down.

@TwigTheWonderKid my method for putting duvet covers on is usually to get inside the fucker & arse about with corners and top edge 🤣 Maybe forgetting that would help it be done in a much more sensible fashion!

@nappybrained welcome to being amazing in that case 🌟

I had quite bad peri-meno symptoms and had been on HRT for a few months pre-diagnosis. I had to come off HRT even though my cancer isn’t hormone receptive. However I haven’t had a period since but also haven’t had any of the symptoms.

@SierraSapphire and @Atreus thanks for the day by day blow of your experiences. I will look out for days 6-7 and 17...What antihistamines did you use for the flushed face?
What is really not helping is that our water supply has mysteriously stopped. Can't wash or flush the toilet. This better get sorted before any kind of diarrhoea hits...and I may need to drag myself to the gym today just for a shower! Couldn't have come at a more inconvenient time. Weekends are awful moreover to find a plumber. Ordinary problems don't seem to take a pause while we're going through treatment. Sigh.

Hi @isaxx, the chemo nurses just advised I take piriton or clarityn for the flushing which seemed to calm things down. I also took a clarityn before doing my filgrastim injection on D2. Apparently it can help ward off bone pain associated with the injection. Not sure if it was the reason, but I didn't get any pain at all from it. Oh, the other thing I've been doing is taking probiotics. I've been very into trying to boost my microbiome for the last couple of years and was gutted (excuse the pun) to think it would be wiped out by chemo. My chemo centre recommended Symprove so I've been taking that every morning. Again, no idea if it's working but I like to think that initially having a healthy gut and then supporting it with probiotics has translated into an easier time with chemo side effects. Mind you, since I've been feeling better this time, all I've done is eat crisps and millionaire's shortbread which won't have helped things at all (but have been delicious!) Fingers crossed the side effects behave for you too.

If you're going to take an antihistamine, take loratadine - I tend to use a supermarket unbranded version daily in the evening, there is evidence that it can improve cancer outcomes, e.g. pubmed.ncbi.nlm.nih.gov/32459128/ @isaxx and anyone else!

So have full biopsy results and am ER positive which I think is a good thing?

Loradatine is also good for meno histamine issues and I believe long covid - just watch out for eyes as it can dry them out. Extensive eye drop research has led me to boots own versions of eye drops often being slightly better than branded ones 🤪

I am still a cancer novice. I believe hormone positive cancer is more treatable though it's managing menopausal symptoms which is the challenge. I'm HER negative I believe which is also good but both oestrogen and progesterone positive.

@Ikeameatballlunch in the scheme of things all cancer is crap but being ER/PR + and HER2 - is the least worst. The others are her2 positive and triple negative which are both more aggressive
@Florabritannica do you feel better knowing? What’s the treatment plan?

Feet blistered but I’m all padded up and off to a windy wedding by the river.

Hope you have a lovely time @TopOfTheCliff ( and don't get blown away!)