Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

My cats hated the smell of me after chemo but they seem used to it now

I only see my children but they don't seem to smell it.

Cancer energy! If only we could think the cancer away 🙄.

Waited all day for my pre-op assessment telephone call, but no one phoned. Made sure not to use my phone so it was clear all day. I'm only having a colonoscopy, so it's not that important but I am being admitted the day before to do bowel prep while on IV fluids. So do need to go through all of that. I already have my tub of Vaseline ready, any other tips for getting through bowel prep that I haven't come across yet?

Should I phone the ward tomorrow? I wasn't told who would be doing the pre-op assessment so no idea who I need to ring.

@NoodlesandDoodles

I asked for Picolax because you only need to drink 150ml twice.

I'd ring @NoodlesandDoodles - give it till 10am maybe?
You could ring switchboard and ask for pre-op assessment, or spk to surgical ward?
Don't suppose your GP could advise?

Thanks for good wishes everyone. I eventually went into surgery around 2pm (I was second on the surgeon's list but it was impossible to predict how long #1 would take). Surgery seems to have gone well. Very groggy but none of the possible things in the "what could go badly during surgery" list seem to have happened. Now just have to wait to find out what next treatment steps will be.

@HohiyiKozbevi That sounds very positive! I'm so glad. I hope you can get lots of rest now - are you in hospital for a while, or can you get home?

@Yorkshiregold I thanked them for their advice. I'm in a senior role, and if I had told them what I really thought, it would have come back to bite me sooner or later.

I'm still not succeeding at getting back into intermittent fasting and healthy eating. It's really annoying me. I'm making excuses (can't take antibiotics on empty stomach in the morning... DH is traveling and DS really fancied that takeaway as a treat....). I'm just lying to myself. Uuuuurgh! Please feel free to give me a big kick up the backside.

@KentishMama be kind to yourself. Finding the willpower to diet is hard at the best of times and you've got a hell of a lot going on. It'll happen when you're really ready and feel strong enough.

@HohiyiKozbevi pleased to hear your op went well, wishing you a quick recovery.

@KentishMama I am very impressed with your professional restraint!

Agree re the dieting, be kind to yourself. Celebrate the small wins & don’t dwell on the setbacks.

@HohiyiKozbevi Glad the op went well & all the best for your recovery.

Back in my bed after a torturous two days in Christie hospital.

First chest X-ray and my lung wasn't visible 😳 Following hours of painful drainage ( give me IV oramorph!) and you can see a good section again.

CT will be brought forward now ( was going to be 29th March).

Fuck shit all of this.
Seriously I CANT have that drain fitted again, it bloody hurt after the local anaesthetic wore off!

If i hear the words brave, positive, fight it battle; there will be blood!!

Will catch you with you later..
Still traumatised from those scan images, which I requested to see!

@Enigma52 I am so happy to hear from you. And may I offer a very small "yay" that a part of your lung is at least visible again? Do you feel a bit better as a result?
Sending you love, and please rant and scream as much as you want. No heroism required in cancer land.

@KentishMama I need a kick up the backside over the dieting too. I have all my meals organised and am now gently exercising and can lose weight until lovely DH comes home with utterly delicious carrot cake for me. Yesterday I cut the enormous piece in half then ate both halves without thinking. He sabotages me with kindness.

@NoodlesandDoodles I would ring the ward and ask why they didn’t phone. Your GP is nothing to do with this process and won’t have a clue. It’s really frustrating and part of the soul destroying way the NHS trashes your mental health. Good luck!

Just wanted to say hi..to all!
Finished chemo 6 weeks ago, which worked quite well also on my systemic sarcoid in fact better on that it seems the bloody tumour! Knew nothing re same but explains why I've been possibly knackered and wheezy for years!
Anyway mastectomy and clearance next week and I'm bloody terrified! Worse fear than the effing mri scanner and bronchoscopy. The drugs I hope will be good, that should help and pretty amazing how thrown out that evening!
Everyone says surgery is easier than chemo but .... I'm so stiff and fucked from the lovely Letrozole! I think I just need a little moan 😭 and I'm tired of watching myself go through motions and pretending to be brave

@nappybrained I’m not far off you (finishing chemo tomorrow but having a mastectomy and reconstruction in 4 weeks time as tumour hasn’t shrunk enough for lumpectomy). I’m also more scared of surgery but having to sound cool with it to everyone around me. I hope someone can reassure you as it’s not fun!

For what it’s worth, I’m sure they’ll only discharge if you’re well enough and you won’t remember any pain afterwards 🥴. Good luck.

@SewingBees I don't know if anyone reported it to Maggies. I could see the other participants were really annoyed by his comments because of their eye rolls and the way everyone was sitting. The thing is, they gave us each a lovely bag of cosmetics so it would feel sort of ungrateful to complain. I didn't say anything. Comments like the ones he made are so omnipresent when you're a cancer patient, but it certainly doesn't make it acceptable.

@tothelefttotheleft

The main thing they (Cedars Sinai - Royal Marsden) advised was to eat more Omega-3.

Oily fish twice a week.

Their list was this: Mackerel, kippers, pilchards, trout, sprats, salmon, herring, crab (fresh), whitebait, swordfish, sardines.

They added this:

** Women who are pregnant or planning a baby, children under 16 years should avoid shark, swordfish and marlin which may contain concentrated sources of mercury.

Then they wrote:

Other sources of Omega-3 include:

• nuts and seeds e.g. walnuts and pumpkin seeds, flax seeds (ground), flax seed oil
• Vegetable oils e.g. rapeseed and linseed
• Soya and soya products e.g. beans, milk, tofu
• Green leafy vegetables

• Some foods are enriched with omega 3

• eggs, some brands of milk, yogurt, bread and spreads

The next slide said this:

–From 12 years old – adults one portion is 140 g fresh fish or 1 small can oily fish

–Chia seeds – one table spoon over 2g ALA
–Walnuts – 30g provides 2.2g ALA
–Flaxseeds – one table spoon over 2.5g ALA (best ground or in oil form)

Next slide after that. The Marsden said this about the UK:

–In there UK there is no recommended dose for supplementation – best to obtain through diet
–Omega-3 oil rather than a fish liver oil
–Check vitamin A content (retinol) – you should avoid having more than a total of 1.5 mg (1500ug) a day from food and supplements combined
–Avoid vitamin A supplements if pregnant of planning to have a baby
–Check DHA and EPA content – aim for amount provided by having two portions of fish per week (about 450mg EPA and DHA per daily adult dose)

Then other advice after that:
-- Limit intake of sugars
--Minimise as much as possible: intake of ultra processed foods
-- Try to maintain healthy BMI

Image attached. I've done a screenshot of the slide showing recommended oily fish intake.

Hello all! How are we doing? I'll catch up in a mo - I'm preparing to be baffled because I saw a graph in there...🤣

You'll all be pleased to know, no-one has pissed me off today 🤣🙈

Have had an inconveniently booked ECG letter though but I'll ring them tomorrow.

Dd1 has introduced me to emo rap...not sure how I feel about it 🤔 my toes were tapping! There was a time I would have pulled a face but she listens to my random suggestions so I'll listen to hers.

@nappybrained and @BreakfastClub80 I'm on a similar schedule having just finished chemo, with mastectomy in a few weeks. I was surprised to find it will be done as a day case as has been expecting an overnight stay.

@lucysmam I am intrigued as to what emo rap is!

@demivolte SuicideBoys apparently, but the S is a dollar sign. They weren't dreadful 🤷‍♀️. She also introduced me to The Japanese House - I think I'll like them.

@nappybrained I'm curious about the side effects you've had from the Letrozole? I've been ok so far (5 months).

@KentishMama go steady on the dieting! I usually fast 7pm - 2pm ish but am starving by the time all the dc at breakfast club have had their brekky, then by snack, and then by lunch (noon ish) I could chew my own arm off, and same again at tea time lately. I figure I must need the extra to usual food since my weight's pretty stable 🤷‍♀️ Maybe you just need the extra to usual?

@Enigma52 glad to see you're back in your own bed & hopefully feeling a bit better now?

@TopOfTheCliff you're right that the NHS trashes your MH! It's all "we care..." blah blah blah...then speak to you like you're not a person & "just" a hospital/NHS number 🙄 (I'm sure individually we do...but the NHS as an entity does not come across well a lot of the time what with the poor communication, badly timed appointments where you're given no choice but to go along, receptionists who won't look further than the next available appointment...I could go on. I'll stop though because it annoys me immensely).

@SummerCycling

Thankyou for posting that for me.

I'm vegan so the plant based sources was really interesting.

Has anybody got blisters on their feet during chemo?

I did my usual walk today and came home hobbling and with four blisters.

Anyone know anything that might help?

@lucysmam second menopause, and pretty nasty joint pain and generally knackered. Whether that's Letrozole or finishing chemo as have an underlying joint disorder and often chemo can make arthropathy better, and the steroids were just fabulous other than being awake all the time. Could just be rebound from that but it's only been 10 days so.... I'll wait and see, have to take a selection of meds too get out of house, move fingers. It's sooo tedious!

Thanks @Tilllly and @TopOfTheCliff I phoned the ward at midday. I'm not entirely sure who, but someone decided that I didn't need a pre op assessment on the telephone and they'd run through it with me when I arrive at the ward on Monday. No one thought to tell me, you know the patient, that this change had been made. I definitely agree with you about not being seen as a person @lucysmam no apology for keeping me waiting all day for non existent phone all.

I have to admit I've never heard of emo rap before @lucysmam I will give it a try tomorrow, not sure sleeping DH would like me to turn it on now!

@NoodlesandDoodles that's really poor of them and unkind! At my pre-assessment they told me I could have a light meal at 6am instead of fasting all night, and that I could drink water the whole time.

That kind of thing makes a big difference to comfort and just to actually being seen as a person :-(

Ouch!

I saw some things in boots the other day, next to the usual plasters

There were 3 or 4 products to help heal blisters. I'd spk to them