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

Firstly, my apologies for being quiet for a while. It’s partly because iPad is not getting on well with longer threads. But also because I wanted to step off and ignore the whole bally disease treadmill,

But I can’t escape feeling tired all the time. Nor that my bodily thermostat swings randomly between hot flushes and feeling chilly, Nor that next month sees various more tests.

Are they your pet rabbits, btw, or a family of wild who just happen to live nearby?

Hi iVampire no need to apologise at all! I'm glad you've managed a bit of a break from cancer. Fatigue is so wearing. I hope it improves soon, and the wild temperature fluctuations. I'm having a PET scan next month which I'm a bit nervous about so we can hold each other's hands while we wait :) do you have any nice distractions?

They're pet rabbits. Talking of which, I'd better go and give them their dinner!

No rabbits, or pets if any kind to distract me unfortunately!

I’ve got a nasty feeling that the minor crappinesses are drug side effects, so I just have to learn to live with them. I’ve been trying to will them into non-existence - because I want to co-exist with this drug effectively and unproblematically for the long term. But it isn’t quite working out like that.

It doesn’f help that I don’t like this time of year much either - seems like a long time before it’s properly light and the sun is brighter.

I sound like a wet lettuce - so, tell me more about the bunnies!!

You're not a wet lettuce. It's rubbish having to accept the limitations of cancer treatment. Though I think it is a bit easier when you come to terms with it rather than resisting it constantly. It takes a while though. I still have days where I'm really grumpy about the side effects and I've been on the same treatment over a year and a half now. It took me ages to just accept that I'll never be "normal" and there are some things that I can't do.

The winter is dragging on this year especially. It was nice and sunny here today. But apparently there's going to be more snow, even into April. The novelty has definitely worn off! Hopefully the lighter evenings will help a bit.

I'll happily talk about my bunnies all day. I have two. One is a dwarf lop and one is a lionhead (she's about half the size of the lop). The little one licks my face and hands whenever she gets the chance. She's very affectionate. The big one is a bit grumpy, except when she has food I got them before my cancer came back and I feel really guilty now as they'll likely outlive me. Luckily my parents love them too and will look after them when I'm gone :)

The bunnies sound lovely leslie. I used to have a huge rabbit and he was horrid!
Been so tired lately that, what with family and everything, I've struggled to get on. Was neutropenic again (and still in the 'severe' category) at last week's blood test, so will try again this week, but getting fed up as it'll have been at least 7 weeks between chemo even if I'm ok to go this week... this one was due on 9th March. Plus it's making me so so tired.
I know what you mean about the rabbits too leslie. I know it sounds awful but I feel something similar about my little girls. The likelihood is they'll be growing up without me and if I'd known that it might have been a very different life path for me and my DH. But they are great and do take my mind off it all!

Glad to hear you got more antibiotics Leslie - we will have to change to the woofie trampolining team. Your bunnies sound very cute and you certainly shouldn't feel guilty, they sound very loved. Do you have a picture? Agree the weather has been grim this year but surely got to improve soon. Still feeling sick as a parrot but slept - supposed to be going to MIL in Paris this weekend but DH said we can stay here if I am not well. Its quite boring but I feel bad for keeping everyone here though its the dog the kids want to see not MIL!

Swaying Completely understandable to be self-absorbed and you've every right to be. I think it does others good to remember these things really don't matter.

Love to everyone else.

Sorry to hear you feel poorly LittleGreyCat. It must be really hard having such little ones but you shouldn't feel guilty, they have a special Mummy and are very loved. Hopefully the treatment will keep you going for as long as possible.

My sister has Myeloma and is on 2 lots of chemo and steriods a week for 6 months. She is being very positive and just wants to get on with it but is finding it very difficult to sleep at night and wakes literally every couple of hours for the toilet.

She feels drained ... anyone have any ideas to help with her sleeping?

LittleGreyCat I hope you'll be around for a long time with your lovely girls and I'm sorry you're so worn out. Did you get a chance to ask about the immune-boosting injections? It's such a drag having your chemo delayed.

penguins sorry you're still feeling so grim I hope you'll be better by the weekend!

flowerpot I'm sorry your sister is struggling. Has she discussed it with her oncologist? They can sometimes reduce the steroid dose a bit. Otherwise they might be able to prescribe sleeping tablets - I have never tried them with steroids so I don't know if they are enough to counteract them.

Yes she has but he said it is part of the side affects. I think she said she wakes as she wants to wee - so every couple of hours she wakes rather than waking for no reason

Oh I see. I guess there's not much she can do then apart from maybe not drinking too much before bedtime?

she has to drink 6-8 glasses of water a day minimum so she's constantly on the loo

Maybe mention to the doctor re the urine - it could be they could give her some meds for urge or refer to urology for tests but not sure what meds she would be allowed. Kegel exercises can sometimes help over the longer term.

Phoned doctors and 111 as still feeling grim and they've recommended going to hospital for some checks, wanted to send an ambulance but prefer DH takes me. Hope they won't just send me away. Doctors surgery reckon it can wait until tomorrow but 111 doctor was adamant its a hospital job. Will try the hospital. Don't want to tell work or they will send me more flowers, its lovely, but I don't need anymore.

I hope the hospital are helpful penguins :)

I had an eye test today. One eye is a bit short sighted so I'm getting glasses. She thinks it's probably caused by the chemo. I used to have amazing vision so I'm a bit annoyed, but never mind. Hopefully now I'll be able to read the subtitles on the telly

Leslie the annoyance will be overcome by the pleasure of being able to see things properly .

LittleGrey sorry you're feeling so rubbish. I've managed to (mainly) avoid being neutropenic thankfully. I had to have a blood transfusion in hospital last year and I've been marginal a few times but it just leaves you feeling so drained physically and in every other way too. Your little girls will know you and love you and you will always be their mummy.

Ivampire I got off the treadmill today but it was bittersweet. I went into work to pick up a friend for lunch but it made me realise how far from 'normal' my life is.

Am going to chase my scan results tomorrow.

I’ve just been feeling really tired and really down today, I was turned down for a volunteering role I had really wanted to do, and had been angling for for some months. Even though I have other irons in the fire, I’ve been feeling lowish.

But I’ve now got a list of all the local ‘Looking Good Feeling Better’ sessions nearby, so will book myself a treat,

flowerpot advice to drink lots (and therefore pee for England) seems to be fairly common for lots of blood cancer patients, I find that drainage massages help. Has your sister enquired about sleeping pills?

Your rabbits sound lovely Lesley I have no pets at the moment, so no fuzz therapy available.

Just back from A&E and have double antibiotics for 14 days, think I have an infection. Was waiting forever, next hospital had declared a major incident and closed, then started feeling really ill and collapsed but at least I then got seen. Did ECG, blood tests, swabs, etc so another lovely bruise and I apparently need to be referred to hospital for a colonoscopy but knew that anyway, was trying to pace my cancer checks 😃 They seemed quite shocked my doctors hadn't referred me 6 months ago but they have sent me to urology and gynae to be fair, I am having more than my fair share of hospital visits. Hope Dr Google is wrong, it got me a 75 percent match on colon cancer and it was my highest match, some of its 60 percent matches are right. Not going to worry about that though but will add to my hospital visit schedule. I am going to have a lovely 14 days on double antibiotics, think that's our trip to France gone.

Love to all.

penguins I'm glad you've been checked out, but sorry you are so poorly. I hope the antibiotics get to work quickly. Remember Dr Google is notoriously unreliable, and bowel cancer symptoms are pretty vague. (Where is the percentage match from?) That said, obviously try and get the colonoscopy ASAP. Sorry about your trip to France - could the others go without you?

iVampire that sucks. I'm sorry. I hope that a LGFB session will cheer you up a bit :)

TQ definitely! I'm quite excited about being able to see properly again.

I'm off to the GP this morning to discuss my morphine. I've tried reducing the dose but the pain came back so I guess I'm on it longterm. It's a bit scary. It makes it all feel much more real

I hope everyone has a nice Wednesday.

Thanks Leslie So sorry about the morphine.

The 75 percent thing is just some symptom checker webpage but my doctors so far have told me its unlikely though hospital doctors last night were annoyed I had been told that and said you can't tell without a proper test which should have happened 6 months ago when I started bleeding. I've sent a message to my doctor to get the test but I think its fairly common around my age to bleed so hopefully nothing. My doctor said as I have an almost normal FBC I won't have it. The anaemia and symptoms mean I should be referred anyway. I do want it done as its the last obvious cancer check but I am not worrying unless I have it and even then not much can do other than follow advice. Some people on here think what I have is peri menopause and I will feel this way for 15 years, I am hoping its that though my doctor is saying I am far too young, he still talks to me like I am 25 😂 and I am only slightly out of the normal age range.

I said to my husband they could go to France without me and he said no way is he leaving me here ill alone, its nice to be loved, I thought he would jump at the chance. He often moaned at me before I got unwell but has been really sweet since making all the meals and he was very happy when I had to hold his hand last night as I was so dizzy. He did find it rather amusing I went quite confused after fainting and was asking why hospital signs were in Russia and why was I in Russia with President Putin then I decided I was in Premier Inn then I kept seeing Orville the Duck, wierd. Feel more normal after a sleep, think have been reading Russia Today too much.

Apologies that's very rambley, still half asleep. I will go to sleep now and pretend I am Orville The Duck again - feel like him with my lovely hospital pad which is like a nappy and knickers.

Where is the bleeding coming from? If it’s rectal then that’s not normal as such though with age and post-childbirth it’s more common to have piles/fissures etc. It’s a bit concerning that your GP thinks a normal FBC rules out bowel cancer. I’m not saying it is likely, but any rectal bleeding must be checked. I hope you can get a colonoscopy soon - make sure they refer you under the two week rule.

I’m glad your husband is taking good care of you :)

The GP was really nice. She’s put the morphine on repeat prescription.

Oh and at your imaginings. I had some weird auditory hallucinations after my first surgery. I could “hear” nurses saying all sorts of things. I told my now ex boyfriend off for plugging my magazines into me (?!) and making me sick. And I thought I was feeling so ill because I was actually Elizabeth Taylor so I needed different tubing it made perfect sense at the time.

Glad your GP was nice and gave you more meds.

You are more glamourous than me as Elizabeth Taylor, mine was strange half of me thought I was in Russia, half thought I was in hospital. But the panda poster I could see was real though DH didn't believe me at first. 🐼

I get both types of bleeding but rectal for 6 months, red, but on and off. Just got an e-mail back saying my doctor is on annual leave so will have to pursue this. I also have private. I thought the FBC thing was wrong from looking online.

DH just called to see how I was but felt bad for waking me up. He seems to prefer me ill. 😂 Had 4 people in the bed next to me, they were kicking them out very fast, and all 4 had been sick so hoping I don't catch that though only one sounded like a sick bug as her husband sick as well. DH laughed as I moved away but so don't need that.

Ah, rubbish timing for your doctor. Can you see a different one? Good you have private. They probably have better post-colonoscopy snacks

For a second I thought you meant four people at the same time I hope they didn't pass on any germs!

Are you feeling any better today?

I have just been to the podiatrist. My toe is really sore now as she was cutting bits off and poking the lumpy bit lots. But the nail isn't digging in anymore so that is much better. If my oncologist gives the go-ahead I'm going to have nail surgery to hopefully fix it permanently :)