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

Tayto Sorry you find yourself here, but welcome. Ibuprofen and Paracetamol is standard for post-op pain relief I believe. That's all I was given after my hysterectomy and debulking. It was enough for me. The worst time was when they stopped the epidural after around 3 hours and then told me it wa fault I was in pain as I hadn't asked for anything else!

Leslie Thinking of you and hoping you're watching the snowflakes from your bed at home, with newly washed hair and a hot water bottle. x

Does anyone know what they give for post surgery pain relief if you can't have anti inflamatories? I can't take ibuprofen anymore because I'm on high blood pressure meds and I'm a bit nervous about just getting paracetamol.

Another one here who is hoping Leslie is ok

Interesting chat about oestrogen and tamoxifen - I have been on it for 2 months and yet I am still having regular periods, these are shorter though (thanks god). I am also 8/8 receptive - I started my periods early and started periods a few weeks after giving birth to my DCs despite breastfeeding for well over a year etc, so I seem to have active ovaries. I wonder why they don't remove ovaries rather than put us through a drug regime with its nasty side effects?

Thinking of you Leslie and hoping you are ok.

Sorry to disappoint but I’m still in hospital with grubby hair it isn’t even snowing here at the moment

I’m on a better drug but it is making me very sleepy. I’ve mostly been dozing today. I’ve read the posts but can’t keep up and my eyes are already dropping again so will be quick.

Thank you for saying such kind things. That really cheered me up :)

Big hug for Miles sorry it was grim

And yay for genie

mrsrhod good news about bupa and fingers crossed for HR sorting out the mess quickly

Haggisfish have you had your results yet?

Tayto welcome. I’ve got bowel cancer too so will try and post something more useful when I’m not drugged up! I only had paracetamol and ibuprofen too so definitely ask if you need something else

Hugs to all who need them

mrsrhod I can’t have NSAIDs anymore either. Last op they just gave me paracetamol. I had some tramadol at home but I can’t remember if I needed to take any in the end. I’m sure they’d be willing to prescribe something else if you explain though

Mamia, I asked about oophorectomy as I was concerned.... positive my oestrogen levels are v high and also my lump was 8/8. I was told it was a very drastic op and puts you into a v harsh menopause. But have to admit I worry because I also have v few side effects from tamoxifen...no hot flushes.. etc and all just continuing as normal. I have my one year post up check up in March and was planning on asking more about it then....eeeeek!

Mrsrhod Following my op I was having morphine/paracetamol in hospital and was discharged with dihydracodeine/paracetamol and my GP gave me tramadol.

Leslie Clean hair is overrated . Get some rest

Thanks all, I've heard of tramadol but never taken it. I'll mention it at my pre op.

leslie its lovely to hear from you, I hope you get a good nights sleep and feel more perky tomorrow.

Wrt the surgery, I've been on meds for nearly four years now to lower my oestrogen levels and according to the blood tests they are very low. I've been told there shouldn't be too much change in how I feel, time will tell but I'm beginning to feel a bit anxious now. If the date I've been given is confirmed I'll be operated on the week before my birthday and 30th wedding anniversary ( I was a child bride!!) so I guess the celebrations will have to wait. Our insurance is reinstated but the surgeons secretary was away today so more waiting.....

Leslie - good to hear from you, hope you feel a bit brighter soon.

Freddie - that's interesting, I think I need to know more about how tamoxifen is supposed to work - does it stop your body from producing oestrogen or does it stop your body from reacting to the oestrogen?

mamia it stops breast tissue from reacting to oestrogen but it has the opposite effect on the lining of the uterus. It makes the endometrium particularly sensitive, hence the concern whenever there is unexpected bleeding whilst taking it.

mrsrhodg I'm glad to hear that your insurance has been reinstated!

Leslie obviously it always cheers everyone up to see you on the thread! I hope you are feeling better and resting all you need.

Thanks for the welcome everyone.
Leslie sorry to hear you are in hospital and glad to hear you aren't in pain and able to doze. Waving to you from my hospital bed here as I've just been readmitted for monitoring and pain relief. I shall use the time to read through these threads and get familiar with everyone's back story. Weird thing is after surgery in here they were very keen to give opiates (I actually asked for my dose to be reduced as I felt too much) but as soon as I was discharged just the paracetamol ibuprofen combo. I think probably pain was what was causing my sickness and nausea as immediately felt better when I had some dilaudid. Wish I could go home but as it is over an hour away down a very potholed road probably best to stay put.
Mrsrhod I have been googling (sensibly I promise!) and found this - might be helpful? <a class="break-all" href="https://www.google.ca/url?sa=t&source=web&rct=j&url=www.guysandstthomas.nhs.uk/resources/patient-information/pharmacy/painkillers-after-surgery.pdf&ved=2ahUKEwilmv_JgsfZAhWLm-AKHS0WD2I4FBAWMAl6BAgDEAE&usg=AOvVaw2FPTmeiA5k3dDrceeG2uEY" rel="nofollow" target="_blank">www.google.ca/url?sa=t&source=web&rct=j&url=www.guysandstthomas.nhs.uk/resources/patient-information/pharmacy/painkillers-after-surgery.pdf&ved=2ahUKEwilmv_JgsfZAhWLm-AKHS0WD2I4FBAWMAl6BAgDEAE&usg=AOvVaw2FPTmeiA5k3dDrceeG2uEY.

Leslie...so very lovely to see you....clean hair vastly over rated. You take care and hope you escape soon...

Hope you get a good night's sleep Leslie - and are home (and clean) very soon.

Welcome to newbies and hand-holds to those waiting for results/diagnosis etc.

I read along every day but never really seem to be able to think of anything to say to join in the chat - i think brain cancer is a bit too different to most cancers! There doesn't seem to be much cross-over! I do have a chemo question though that maybe some of you can help me with. I'm taking oral chemo at the moment, and my oncologist seemed to think I might be able to go back to work but the chemo is making me feel horrendous for 10 days out of every 28. Has anyone actually managed to work during chemo? I'm a secondary school teacher so no 'taking it easy' if I feel a bit dodgy, working from home, leaving early etc so not really an easy job. I spent 3 days in bed this cycle just completely wiped out, nauseous and with lots of cramps in my stomach as it was trying to digest it - i just can't see how I can manage to work too?

Anyway, rambling! for all!

Littlegrey I managed to work through mine, I had one day off when I was really ill one day after I had chemo but I think that's because I hardly drank anything. They told me to drink as much as I can to flush the chemo out, but I had it through a cannula so I'm not sure if it would make any difference if you have it in tablet form.

Have you spoken to the nurses about how it's making by you feel? There's lots of different types of anti sickness tablets to try if yours aren't working. If the chemo is making you really ill they may suggest a lower dose.

Luckily my job isn't stressful, I don't think I'd have managed work if I had to deal with a classroom full of kids.

Hope you start feeling better soon how long do you need to take the tablets for?

LittleGrey sorry the chemo is making you feel rubbish. Tbh, I'm not sure you can make comparisons. We all react differently and what's important is how you feel, not how anyone else felt. I worked last year, but I wfh and if I wanted to lie down and have a snooze I could do so without being held accountable to anyone.

As unicorns says, talk to the nurses because they may well be able to offer you something to help.

Tayto sorry you've been readmitted , hope you're sorted out and can return home soon.
I was in for a week after my op mainly due to nausea and bowels not working..this recovery is a slower process than I imagined ..take care of yourself.

littlegrey - sounds like being off sick is the best thing for you , are you feeling pressure to return?

Thanks ladies. The fatigue is bad, but I will talk about other anti emetics when I next see the nurse. it's having to have 5 doses every cycle I struggle with - by day 5 I'm almost in tears just trying to get the tablets down!
ggirl the pressure isn't from work - they're being really good. It's more that I'm about to go into half pay, and mine is the only income for a family of 4! We have savings from my critical illness payout, but I want to keep as much of that saved, as it were! Plus my chemo plan is 12 cycles so last dose currently due end of November which seems hugely far away!

littlegrey is there any way they would let you work the part of the month after/before chemo when you are likely to feel ok and school arrange cover for rest? Or would that be too disruptive? I have friends who teach and they are all completely wiped out after school and that's when healthy. Are there any charities that would provide financial help - I know it is hard to ask but I think there were a few that helped my family when we ran into trouble when I was a child (gentlewoman's trust?) ? As someone who just tried to make my husband bring my work laptop into hospital so I could finish a project (no that's not happening!) I know it can be hard to step away from responsibilities but I guess we all need to look after ourselves first and deal with other things after if possible. Can appreciate how worrying it must be though.

ggirl I think most of my pain is from gas weirdly - never knew it was this sore. No temp or other signs of infection at least. Having lots of bowl movements that are just water really despite not having eaten for two days (under medical advice - I feel like I could murder a fillet-o-fish for some reason!). Surgeon muttering about naso-gastric tube if I throw up. Is that similar to what you had? Any tips to deal with it? Just had pain meds so feeling more comfortable but still can't sleep.

Bowel of course....

Tayto how are you feeling this morning?
Littlegreycat no advice from me unfortunately - I have BC and while I have other friends with other types of cancer, I don't know someone with your particular illness and chemo regimen. From what I hear, however, talking to your HCPs about different antiemetic options is a good idea?
Leslie I hope you got a good night's sleep. And remember that now everyone tells us washing your hair all the time isn't actually a goodidea!

Tayto oh yes they threatened me with NG tube as I was bloated and nauseous. Weirdly the IV antiemetics didn't work very well but eventually they tried oral ondansetron and it worked, teeny tablets which I managed to keep down. It was a turning point after that.
Hope you get it under control today.

littlegrey I have a friend who is main earner in house and has been gong through treatment for Breast cancer. She managed to arrange a mortgage break and she got good advice from Macmillan about help with finances.

littlegrey...I just wanted to say that we all have different sorts of cancer/different stages of treatment etc so please please post whatever you want. The main thing is I think we all understand what a bastard cancer is and how it can completely mess not only with your head but with the practicalities of life and we can try to help each other....I know that just knowing everyone is here is a nice fluffy feeling...though wish none of us had to be!
Tayto...sounds like you've had a bit of a shocker (nice british understatement there)....on a flippant note Tayto crisps remind me of a very happy holiday in Dublin..is that where your user name came from?
Happy, how are you coping today? hope all is ok
Miles...ditto
Twitter, how's it all going? Wondered how you were feeling now you've given up work for a while...
It's really snowing in London....sitting wrapped up in various jumpers and some very 'attractive' slipper sock things, waiting for husband to leave for work so I can crank up the heating..feeling guilty for failing to find small child's gloves before packing him off to school..and even worse that I've failed (as usual) to do any sort of clever hand made costume for world book day tomorrow (most of the other mothers will have...eeeek) But that can still be remedied at least by throwing money at ToysRUs...I hope!
Will stop waffling....
Leslie I hope you're snuggled up warm either at home or in the hospital and people are bringing you cake....personally I fancy lemon drizzle cake, but as my cooking skills are about as good as my costume making ones I will ahve to venture out to get it!
waves to all....