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

Have a great time dulce!

The saga of the house move continues here. Have to be out of old house by tomorrow so last minute scrabbling! Then storage stuff has to be sorted - downsizing is no joke! Can’t believe the amount of utter shite we have amassed over the last few years!!!

to everybody! And Leslie I hope you manage a nap later! I’m knackered too as I sweltered last night having forgotten to take off my tracksuit bottom things before bed! Only realised at 6am when I’d been tossing and turning all night. Am so exhausted I never really woke up enough to twig and take the wretched things off!!!

Good luck with the house move Addle. The one good thing about moving is getting to sort all the crap out that you've amassed over the years and finding things you'd totally forgotten about. Hope you've got plenty of help. It'll be worth it once you're all settled and can relax for a while

Bon voyage Dulce I hope you manage to leave your cares behind for a few days :)

Good luck with the moving addle that sounds very stressful!

I've just had a bit of a nap. Feel all out of sorts today and got rather a nasty cough so I hope that wears off soon.

Just had a phone call asking me to go for a pre assessment tomorrow and hopefully I'll be having my stoma fitted on Wednesday. I knew it was coming but now I've had time to think and get my head round it I'm totally dreading it

purple I'm not surprised. It's a big deal. Good luck with your pre-assessment. Hopefully you'll get more details about what to expect. And let me know if there's anything at all that I can help with.

Thanks Leslie there's a good chance I'll be chewing your ear off with all the questions I'll probably have

Thank you WhatwouldLeslieKnopeDo and Miles for welcoming me it was terrifying when my son was diagnosed last year and then surreal to be diagnosed myself. Also our middle child was diagnosed with Langerhans Cell Histiocytosis (LCH) when she was 8 months old and had a year of chemo. LCH is a rare blood disease and for all three of us our condition is related to white bloods cells. LCH behaves like a cancer but is not usually classified as a cancer. All of our conditions are very rare and when I hopefully recover my oncologist wants to do some genetic testing. Our other child completely recovered BTW and is now a very tall and healthy 15 yr old.

Bed rest was automatic because my spine was very unstable and it was scary as it felt like it was collapsing at times. I have had an IV drug every month for 3 months now which builds bones and I definitely feel much stronger. For example and I can now walk from my bed alone and use the loo in my ensuite when in June and early July I had to use bed pans to go to the loo. I also was getting pains in various areas of my body such as the back of my neck and my ribs which have all subsided, now the pain is just in my lower back in the same place it started.

Walking, sitting in a chair and standing all exhaust me after about 10 minutes or so. In fact I can only walk for a few seconds at a time really.

Good news is that I have been handling bed rest well, I am not sure why as I am very active normally but I have not been sad and depressed but calm and content. My DH has been incredible and my kids have been very helpful. Of course thank God for the internet, Netflix and Amazon Prime for keeping me occupied!

Miles what is your story and prognosis? How are you doing? xx

Good luck tomorrow Purple. It's bound to be a really scary few days but you WILL get through this.

Advice off the top of my head - get some big/comfy knickers! The best I've found are these M&S flexifit. They're a bit pricey and they seem to have reduced the range of colours, but they're so comfortable. No pressing on scars etc and fits over my stoma easily.

Goodness Movable that's a lot to deal with. I'm glad your children are doing well now. It will be interesting to find out if there's a genetic link - otherwise that's a lot of bad luck! I'm glad your mobility/strength is improving too. Hopefully that will continue I dread to think what we all would have done without the internet! I do get frustrated sometimes and I'm nowhere near as restricted as you. But I think there's a certain calm that comes when you literally do not have a choice.

Thanks TQ I will get through it as I don't really have any other options. I'm sure I'll be ok once I get used to it. I think it's just the fear of the unknown. Lovely comfy granny knickers have been ordered Leslie

Wow Move that is a hell of a lot to deal with! How are you getting on with the chemo? I shaved all my hair off last week as it was falling out in handfuls. I'm attempting to learn to crochet as I don't really have the energy for much else other than watching tv

Leslie did you have to have bowel prep before yours? Taking loads of laxatives? And if you did did you have to take them before you went into hospital? I live half an hour away from my hospital so do you think I'll be able to take them when I get to hospital? I don't fancy being stuck in the car for half an hour with no toilet

Ooh good luck purple - it’s always scary thinking about going in for these things, and I know the thought of a stoma is a big deal, but I hope you find it gives you relief in terms of symptoms and you find it helpful when it’s all said and done

move that is incredibly stressful - and am glad to hear you have been relatively content with bed rest - I remember the feeling of trying to stand after my bowel operation - a very low blood count and no abdominal wall muscles made it exhausting standing up so I feel for you. I hope the genetic testing reveals something useful for the rest of your family that can help prevent any more of these conditions

Hope you sleep better tonight Leslie!

Oscha good luck tomorrow

purple I hope you get some sleep tonight. I didn't have any bowel prep but I'd already had most of my bowel removed.

addle thanks. Just settling down now. I hope you sleep well too and don't melt tonight

Good luck tomorrow Purple!

Good luck @purpleunicorns.

@Movablefeast as @WhatWouldLeslieKnopeDo let's hope they come back with some results on your genetic testing.

On a more frivolous note ladies .... I'm sorting a hospital bag (just in case as DH won't have a clue apart from pjs and toiletries anything else I should pack?

Also any recommendations on toiletries and make up. I love my products. Please tell me to p1ss off if I shouldn't be being frivolous I just need to get organised it's how I cope!

Ranout I love anything bodyshop, they do lovely shower gels. Do you have a kindle? If not a book or some magazines. I'm going to take my crochet in to keep me busy. Oh and don't forget to take a phone charger to keep us updated on how you're doing. Do you know how long you're going to be in for?

Thanks Addle and Chase, I'm hoping the pre assessment goes ok today so I can get this over and done with and stop feeling so uncomfortable

Good luck today purple It must feel very daunting, in time I am sure that it will become part of your routine and you will get used to it. sorry that it is something extra to contend with on top of everything else. At least you are now closer to restarting chemo too...

Have a fab holiday Dulce my kids are back later today and I cannot wait to see them. We are going to have a fun day out somewhere 2mo before round 3 of chemo on Thursday.

addle good luck with the last day of your move. The odds and ends at the end are the most time consuming I find as you end up dithering with where they will go etc. My advice is 4 piles.... Keep, sell, charity shop & tip! Good luck,

I hope you got a better sleep last night Lesley Pesky steroids!

Waves and hello to everyone & all the new people. My iPad has lost 2 posts midway through me typing, so I don't dare do a longer one only to lose it again. The thread is really busy, it is sad so many people have to be on here, but it is a great source of support, so welcome

Have a good day

Good luck guys hope all goes well. Purple I'm following you closely I think you're a few steps ahead of the road I will be going down.
Sensitive question but how much weight did you guys lose before you were diagnosed? I'm 7 1/2st now, used to be 10, I can't eat and have no appetite I'm scared about how I will fare with treatments, will my body hack it?
Also I'm STILL in hospital although my ct is at 9:30 this morning so I'm hoping to go home today. I get to see my girls, it's been 5 days I've only ever left them over Night before. I can't wait.

planned glad your CT is today, the 20th sounded a long way off.

Is there anything high calorie you can bear to eat so even if you are not managing much it will help you not to drop more weight?

I am thinking nuts, avocado etc as they are all healthy fats. Plus a chocolate eclair or two maybe
My Dad dropped weight when he did chemo and he was told to eat custard tarts to keep his strength up which seemed to do the trick for him.

ranout you really are organised with having a hospital bag at the ready! I keep my kindle, iPod, emergency £20, popcorn, water and a Nakd bar in my handbag constantly. Plus make up bag with minimal bits in, moisturiser & hand cream & a t-shirt material scarf. If you needed to go in suddenly I would imagine pj's, cardi & light dressing gown and anything to occupy yourself - iPad, book/magazine, crochet like purple. I got a felting kit a while ago & would possibly take that to pass the time. Or an adult colouring book could be a good distraction.

Good luck with your CT planned and fingers very firmly crossed for being able to go home today. I didn't lose any weight prior to diagnosis, and in fact gained it during treatment - actually very common due to steroids, nausea etc. You might be referred to a dietitian to try and build your weight up a bit.

noodles sympathies on the disobedient iPad! Mine does the same. Enjoy having your children home :)

purple good luck with your pre-assessment hopefully they'll be able to allay some of your fears

ranout I always take some easy snacks, and some squash as lukewarm hospital water is gross! My advice is not to use any favourite products as you might start to associate the scent with hospital. I still gag when I smell mango shower gel take hand cream and lip balm as hospital is so drying.

Good morning. I'm feeling refreshed after a decent night's sleep :)

Oh, wet wipes! I always feel so unclean in hospital.

Planned I lost about half a stone although I was around 13.5 stone to start with so could do with losing some. I find I can't eat when I'm stressed or worried so that why I lost it. Once I started chemo I soon put it back on and you get weird cravings for certain foods. Unfortunately mine was for cheese

As Noodle says try and have high calorie foods and drinks if you can, or you can get milkshake things from the doctor that have loads of calories in. Good luck with the scan, they only take about 10-15 minutes so hopefully you'll be home by dinner time

Thanks guys.

@noodles44 I also have a felting kit! Guess what everyone's getting for Xmas! I also thought the stabbing motion might release some stress!

For those of you losing weight I'm sure you've already thought if it but can they prescribe those build up drinks?

I was prescribed the drinks before my op but I refused to drink them I did try them but they were not nice. If I need that sort of thing again I'm going to buy the Complan powder that you can add to normal food.

Also use full fat butter, milk, cream etc. No "diet" foods.

I've never tried felting, but now I'm intrigued

Hey all,just a quick check whilst waiting for my portacath to be fitted. Apparently there is a pillow shortage and 2 out of 4 theatres have been delayed due to surgeons not accepting patients without pillows. I shit you not.

I've got my cross stitch to keep me busy. Can't add pictures as my phone makes the pics too big.

Regarding weight gain,our ward dietician used to teach us to add butter,full fat cream or milk to everything creamy and we used to do snack rounds mid morning with cakes etc and we used to give complan soups and milkshakes(made with full fat milk of course)

If you are really struggling then ask for complan soups or shakes,fortijuice drinks and lots of cake.