We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

Useless day here so just popping in very quickly to say good luck for tomorrow purple and waving to everyone else

Morning everyone,

I hope your chemo goes well today purple & you feel better for it.
I have been doing lots of napping over the weekend after chemo on Fri. Less nausea thankfully so far.

pandora that sounds like a very draining situation for you to be dealing with at the moment. Easier said than done to try to focus on your needs/rest etc I bet and very frustrating. It sounds like you have referred to all the right places, but a shame the rest of your immediate family are not any use with help for your Grandad.

ranout unfortunately the ex is an ongoing nightmare. After 3 years of dealing with him & his mood swings, dealing with cancer feels easier as I am being looked after, there is a plan and people on my side. He has alcohol issues & after we split he eventually ended in rehab, then lost his job. He hardly sees the kids because he cannot handle it, blames me for everything as thinks I abandoned him. He is a man child & is currently taking responsibility for me having cancer as believes he has caused it due to the amount of stress he has put me under. We are trying to sell a property and the fall out from that is not great. Fingers crossed the sale goes through ASAP and it is one thing less to sort.
I have taken a step back from attempting to do too much due to being ill and just focus on my girls and me as much as possible. It can be pretty wearing though, but I have a fantastic family and a very supportive set of friends, so consider myself pretty lucky really generally (apart from getting cancer!)

My chemo,which was due this Thursday, has had to be delayed until next week as ive got an infection in one of the surgical sites in my neck. So they've swabbed it and I'm on antibiotics and awaiting a review with a consultant this week.

One thing after a-fucking-nother

@Pandoraslastchance I swore for you, when I read you post! Grrr I suppose at least their looking after you.
@noodles44 sounds as if you may have light at the end of the tunnel with your ex? I can't imagine having to deal with all that and a man child. As you say focus on yourself and your DCs and he can do one. I can believe he's trying to blame the cancer on himself! Lordy!
To lighten the mood, if I may, no it's not constipation again it's wiggate! Just got my lovely nhs wig (it's actually quite nice!) brought it home, popped it on and the kids were beside themselves laughing! Only had it on back to front!

Pandora that sounds so tough. Could your husband go and do some cleaning instead of you? Or is there any chance your grandad could live with you? All the stress is the last thing you need right now

I've just got home from chemo so I'm out a lot quicker than I thought, luckily no issues with being on antibiotics as the chemo went ahead as planned. Super tired now as I was so uncomfortable last night so I think it'll be an early night

Glad no issues with chemo purple & you were not as long as expected in hospital. Get a good nights sleep.

pandora what a pain with the chemo delay. I hope the antibiotics kick in quickly & you do not have to wait long to restart.

ranout the wig sounds great, I felt like I was in a 70's glam rock band when I 1st tried mine on as it felt so big. It is my first school run 2mo wearing it, so hope I don't stand out too much with it!
The ex stuff is just annoying mainly but does get me down from time to time.

I hope everyone is doing alright. I have flu type aches & pains today, but not having constant nausea any more, so am pleased about that

Good morning all. I spent a lot of time here when both my parents were diagnosed with cancer and your words made me stronger and helped me.

I am delurking today to step into the fasting conversation and also give some guidance on how to access medical papers you might be interested to read on this or any topic.

The research on fasting and cancer treatment is strong and kicking. Valter Longo is the leading researcher in that field. His articles are here

www.ncbi.nlm.nih.gov/pubmed/?term=Longo+VD%5BAuthor%5D

You will notice that not all articles are accessible. For those only giving the abstract, a way around the subscription is to use sci-hub

sci-hub.tw

Paste the PMID number into the research box and it will unlock the article for you.

Let's try the first one on the list "Periodic fasting starves cisplatin-resistant cancers to death." Under the authors name there is a code PMID: 29875131 . Just copy the numbers and put them in sci-hub.tw , IMPORTANT just the numbers, not the letters and the pdf will open, you can then save it without downloading. I click print preview and save the preview without downloading the file.

If for some reason sci-hub doesn't open go on wikipedia en.wikipedia.org/wiki/Sci-Hub it will give you the working links in the info box on the right.

Valter Longo's book has several chapters dedicated to the fasting and cancer treatment. Maybe you can borrow a copy from your local library or have a look here libgen.io/book/index.php?md5=D36E32724F45AA92BE06935AF92EF2DE that will take you here libgen.pw/item/detail/id/2169513?id=2169513

There is usually a 5 to 10 years gap between research results and changes in protocol so being able to stay up to date with the research is quite important.

I hope this can help one of you.

Just checking in. I'm under the weather. I spent all of yesterday in bed. Today I've made it to the sofa so that's progress :) I think my body is rundown from so many rounds of chemo. I'll see what my oncologist says this week.

purple I'm glad chemo went alright

pandora sorry about the delay and added family issues

Sending love to you all

I meant to say TwittleBee I hope you're feeling better today. If not, seek help ASAP. Definitely do not massage/do anything if it's sore. I thought it was a wind pain.

I hope your new mattress arrives soon Leslie and you can luxuriate on it to your heart's content!

I'm just about recovered from the oophorectomy - it wasn't nearly as bad as I thought it would be. Hot flushes are horrible though, I seem to be having even more than before and more intense. I've tried a few things - paroxetine, amitryptiline, evening primrose oil - but none seem to have any lasting effect. I self-referred to the menopause clinic, which was kind of ok, but I was a bit disappointed at their lack of knowledge in some areas and I don't think they can help me much more.

I hope your new mattress arrives soon Leslie and you can luxuriate on it to your heart's content!

I'm just about recovered from the oophorectomy - it wasn't nearly as bad as I thought it would be. Hot flushes are horrible though, I seem to be having even more than before and more intense. I've tried a few things - paroxetine, amitryptiline, evening primrose oil - but none seem to have any lasting effect. I self-referred to the menopause clinic, which was kind of ok, but I was a bit disappointed at their lack of knowledge in some areas and I don't think they can help me much more.

I have no idea wtf I'm doing to post twice and before I'm finished writing!! Argh, apologies!

I've got the dreaded colonoscopy lined up for next Monday - I'm dreading the prep over the weekend. Hope you're starting to feel better Twittle. I'm hoping I'll be offered gas and air, I won't be able to have sedation as I have to pick DS up afterwards and I don't have anyone to stay with me overnight.

Sending love and gentle hugs to all.

Well just to make my day better I've spiked a temperature and I've been directed to a&e I've had enough.

So sorry @Pandoraslastchance - this happened to me a couple of times. Whereabouts in your first chemo cycle are you? The only thing that matters is that you are safe and hopefully they'll isolate you on arrival.

Both times it happened to me I had to stay in isolation for 5-7 days until neutrophils started climbing. I actually found the enforced rest beneficial too. Hope everything goes ok x

Oh Pandora, sorry . there's not a lot of good new around right now is there. so are you going to be stuck in A&E all night?

I was moved to majors due to a high pulse rate of 128 and temp now of 38.
I was due my second round of chemo this coming Thursday but they have delayed it until next week.
I feel like crap. I'm so tired and dizzy. My neutrophils were bottom of acceptable this morning when I saw the chemo specialist nurse.

Bloods are back and are all ok with no signs of infection. I've had one dose of iv antibiotics and I'm allowed home under strict instructions that I'm to rest, drink plenty of fluids and not get stressed and to complete the oral antibiotics.

OH isn't happy but I didn't want to stay in hospital on a main ward and risk catching something.

@FlippyNeck I hope you manage some rest before your procedure.
@Pandoraslastchance gosh it must feel as if nothing's going right at the moment. Can I be frank? Maybe now is the time to listen to your body and put yourself first. Your probably swearing at me now. It's time for your family to look after you and take your stress away. Let your DP look after you. 
@WhatWouldLeslieKnopeDo hopefully you had a good nights sleep? Can you catch up today if not?
@KingIrving thanks for the links. The 5-10 year info gathering is useful. Touch wood my first round of chemo went well I had my last proper meal on the Sunday evening had chemo on the Tuesday and next proper meal on the Wednesday evening. The Monday night I had a tin of veg soup and Tuesday a banana. I will fast again this time and see how I feel but also listen to my body and if it needs feeding I will eat!

purple how you feeling after the start of this lot of chemo? Hopefully won't be as bad as last lot for you

Pandora I am so fricking sorry for you, it's not fair! Really is one thing after another for you isn't it? Hoping they clear the infection asap so you can get on the chemo

Flippy good luck with the colonospy. Hopefully you'll be given a fruity flavoured prep so you can mix it with squash. The sitting on the loo is the easy bit haha. You'll be allowed the option of gas and air for sure.

leslie hope you're feeling less under the weather today?

I ended up in A&E as pain got so bad. I've been sent home now after they had a prod and deemed me okay to wait at home for my CT scan. Been given oramorph, codeine and diazapan to keep pain at bay though. Been told to sign off work too, which is not good as I love my job

Oh Pandora it's one thing after another. I have to agree with Ranout, this is the time to think about yourself no matter how selfish you think that is. All the stress definitely isn't helping and you really need to start looking after yourself and stop worrying about others Easier said than done I know
They should have put you in a side room as you're having chemo, I've managed to have my own room every time I was admitted

Good luck with colonoscopy Flippy. I get hot flushes too and other than having a massive noisy fan in the bedroom nothing seems to help. Try filling a hot water bottle and putting it in the freezer

Aw Twittle how are you feeling now? I hope the drugs are helping with the pain. Don't worry about work, you're more important and you can go back once you're all sorted

I'm feeling a bit bleugh but I'm on steroids for the next 3 days so I'm not too bad at the minute. Friday and Saturday will be the worst days so I'm trying to do as much as I can getting all the housework sorted while I have the energy

Hope you're feeling better today Leslie

Pandora I hope you manage to get some rest etc at home and can be back on track for chemo ASAP. Not what you needed at all & I am in agreement in that you do need to prioritise your care right now.

Lesley I hope you are feeling a bit better and your new mattress has arrived and is helping you rest up.

Purple how are you? Any issue with the fistula at all this round?

Twittle thinking of you too & hope you're ok.
Also, planned thinking of you & hope the email to the Royal marsden has been beneficial to you.

I ache like I am in the throes of a hideous flu bug. Have had a delicious bowl of homemade soup & will be off to bed again soon with my paracetamol. It was the first day back at school today for my eldest, I wore my wig as instructed by the girls for the school run and no one recognised me!!

I hope everyone is doing as well as possible. Night X

pandora I hope you'll be on the mend soon

TwittleBee I'm glad you've been checked out and got decent pain relief

Still in pain and now my neck is all swollen, so I feel shit. Dosed up on morphine but it's affecting my bowel and bladder so a bit of a balancing act!

Sorry not to reply to everyone but sending love

Leslie I hope you make it to the oncologist tomorrow and they come up with a plan to alleviate all the pain and symptoms... thinking of you and everyone else suffering from this bastard cancer.

Leslie I hope you manage to prop yourself up ok with regard to your swollen neck and manage some rest. It is such a fine balancing act with the meds. My entire body is jangling & sleep is nowhere near, so am about to try the co-codamol on the advice of the chemo nurse last week. I hope you get on top of the pain ASAP & manage to sleep.

Thank you purple leslie and noodles still in pain today. had a tough night. This morning finally managed to pass a poo since before the scope so hoped that would relieve the pain but it hasn't. Is it normal for the 1st poo to still look like you're on Klean-prep? (Blimey never thought I'd talk about my shit quite so much!)

purple bless you for being so foward thinking and getting the chores done in amongst all this!

noodles hope you recover from the flu like thing asap. Not what you bloomin need! How did they get on with school?

leslie sending love to you and extra thank you to you for really helping me understand what's going on atm despite feeling like absolute shit. Really hope you get some extra help and care yourself soon