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

Hope you can sort your nails out.

Can see any doctor, one has just adopted me, not even his patient - my husband said the doctor saw him in town and the doctor asked why I hadn't been contacting him. He used to phone me every week at one point, never entirely sure why, seemed to just like to gossip. He's lovely but some things I would rather talk to a female about. Glad he's got a holiday as he was quite stressed and saying they did everything wrong. I'm hoping I can get a referral just by phoning as I'm feeling rubbish but we will see. They said I will feel rubbish for 14 days on the double antibiotics but at least should get rid of any infections.

I am a bit tempted to go private after seeing the difference - it wasn't quite 4 at the same time but they were kicking out someone who had collapsed being violently sick and awaiting an urgent heart operation and it was only Tuesday afternoon. Only to the waiting room but still. In the next hospital cancer patients were said to have had surgery cancelled after waiting 3 hours and A&E was out the door then 12 hour waits then closed totally and next is 30 mins drive away. I don't have a mobile and have to get hold of my daughters to book a private one - she seems scared of me dying saying she will look after her brother is I die but can't get the phone off her. Will have to get my own phone. Really tight deadline at work, urgh.

Leslie sorry to hear about the morphine, but at least it's doing the job without the syringe driver. You're not having a great time right now are you, what with your ear and toe on top of everything else. I love the sound of your bunnnies! I think we may need a photo..

The Easter bunny will be visiting the TQ household - my DCs may be grown up but we still have the traditional egg hunt.

I chased my scan results - Good News! No progression. No new tumours. And the one at the top of my spleen has reduced from 1.9 cm to 1.6 cm, which is very reassuring. No ascites, no lung mets.

Nicky when do you get your results? I think you must be having a scan about now too? Fingers crossed that the Caelyx is working for you.

Is anyone taking CBD (cannabis oil)? Everyone is talking about it. I asked the question and was told no-one knows enough about it to make any kind of judgment call.

penguins he sounds a bit intense! Fingers crossed you can get the referral over the phone. That's awful about the other hospital. It's all such a mess. Thanks a lot Jeremy CHunt!

TQ that's really great news yay for Caelyx! There's a few bunny photos on my Facebook page

My toe and ear are just minor annoyances really. I was being a bit melodramatic about the morphine as it makes me feel like a "real" cancer patient. But it's such a relief not to have the pain. And definitely better than a syringe driver.

You're never too old for an Easter egg hunt! We do one at my aunt's house :)

My DH got worried he was trying to start an affair but don't think so as he's about 10-15 years younger Hearing all my very elegant problems should have put him off in the vague off chance he was!

I think you're amazing how little you complain with what you are going through. Have a lovely Easter egg hunt. DS loves the places with the giant gold bunnies as he loves the rabbits. Hope the weather improves, he's meant to be feeing red pandas on 11th with DD.

TQ Glad you got good news.

That's fantastic news TQ! I'm interested in CBD oil but have no idea on where to safely buy it, I know Holland and Barrett sell it but I've heard the one they sell is really weak compared to others so I'm not sure it would be worth it.

I know what you mean about taking morphine Leslie when they first prescribed me it and put it on my repeat prescription is when I felt like a 'proper' cancer patient

Purple my local health food store (not H&B) sells ImproveMe. Website is www.improve-me.co.uk

It's non-hallucogenic and completely legal. I haven't got any yet but I'm certainly thinking about it.

TQ I am pleased your results were good, but what a balls-up with the appointment. Sounds hugely and unnecessarily stressful.
Littlegrey and ivampire I am sorry to hear you're feeling rubbish at the moment.
Leslie I am sure you'll be thrilled with your vision once it's corrected, even though wearing glasses is a bit of a faff. I am blind as a bat, and spend the first seven years of my life thinking that the world had fuzzy edges. Getting my first specs was a revelation .
Swaying I hope you get a greater degree of certainty soon.
penguins are things any better today?

I phoned my consultant's secretary this morning. She confirmed that the MRI results are back, understandably would not give further info over the phone. I work in the NHS, so while I know that often no news = good news, I'm aware that very occasionally no news = report sent to wrong inbox or lost down the back of filing cabinet, so just wanted to exclude this possibility.

sending love to all .

Turn Hope the MRI results are OK, hopefully they just don't give them over the phone though I always having the same thoughts re news.

Feeling pretty rubbish today and think I worried my manager as I fell asleep and didn't phone in first and she asked if I needed 2 months medical leave as I don't seem well. Also gave me a £2,500 bonus which is totally undeserved as I've been unwell so much. Feel very lucky to have contract renewed anyway. Hope I'm not going to feel like this for 2 months. Was having the hallucinations last night again very weird I was flying through the air by myself, having affairs and part of a Russian military operation with Putin shooting people whilst flying unaided. Gone this morning thankfully, don't think its madness as I'm half aware its not real, seems to be when very tired. Not sure I want to admit to this to a doctor though! Cancelled France but at least MIL was lovely and told DH he needs to look after me. At least its Easter soon so won't be alone for 2 weeks.

Thanks TQ I'll look into that, didn't realise it was so expensive, although it is a lot stronger than the one Holland and Barrett sell.

Your manager sounds lovely penguins all my work colleagues have been fab, they even bought me a load of unicorns gifts when I was in hospital

penguins that's kind of you to say, but I certainly do complain. This is sort of my place to let it all out as I don't like to upset my family :) plus I feel like it's important on here to be as honest as possible about the cancer experience so that it's more helpful to others to know what to expect rather than the sugar-coated "stay positive" stuff which is often posted on cancer forums. I'm glad your boss is understanding. And you still deserve a bonus. It's not your fault you're ill, and I'm sure you'd much rather not be ill and be able to work as normal. Definitely tell the doctor about the hallucinations. It might be one of the antibiotics. Have you checked the leaflets? Some of them are really powerful.

purple are you on the morphine now? I've decided to look at it positively. I have the pain and I'm lucky that a relatively small dose of morphine can control it and allow me to live my life :)

TheTurn I'm so impatient now as I want to be able to see the subtitles properly! they won't be ready until next Friday. I hope you get your MRI results soon and I have my fingers firmly crossed for you.

It's been pouring with rain here today. But I had a lovely lunch out with my parents. And also a little bit of shopping. I'm feeling much better from the ear infection and chemo side effects. I feel almost normal! :)

Yes I'm on slow release 20mg on a morning and 20mg on a night, I also have oramorph to top up if needed. I stopped taking it for nearly a month but this last week I've been getting the same pain in my leg that I had before the treatment started so I'm worried that either the treatment hasn't worked or that it's spread somewhere else so I've started taking it again

That's the same as me. I am glad not to be relying on oramorph now as it is just so sticky!

Sorry about the leg pain. Maybe there's some inflammation from the radiotherapy that is irritating a nerve or something? Is it next week you're having your scan? Hopefully not much longer to wait until you know for certain

I'm keeping everything crossed that it is just nerve pain, or even lymphodema although that's unlikely as my leg doesn't seem to be swollen. I go for an MRI on the 9th and a CT on the 11th then get my results at the end of April. On the positive side my critical illness cover has finally paid out after 5 months of waiting so I've got a bit of money to go away for a few days before I get my results back.

and for everyone waiting for results

Purple Glad your work are looking after you, makes a big difference. Hope your leg pain turns out to be nothing. If it is nothing I find Feroglobin takes mine away.

Leslie Glad you had a lovely lunch and you are feeling almost normal. I started to feel almost normal though can feel a wave of it coming over again, grrr. Still kids are now on holiday for 2 weeks and old enough to do things for themselves. Told DH about the Russian hallucinations and he said maybe its showing my real desires - good job I never said about the affair hallucinations! Will mention to docs when I get chance though same as before meds in hospital so might be the illness causing.

Hope everyone has a nice Easter.

That's great your CI cover has paid out and you can go away. I may resist the wine - not sure what would happen with double antibiotics, hallucinations and wine

Thanks for thinking of us Leslie, I'm glad you are getting relief from your pain and hope that continues.

My daughter's op went well and she was so brave. I decided to bite the bullet and ask outright what they think and he said he's not worried the lesion is anything sinister which is a weight off my mind!! However when checking her over they have said she needs to be seen by the GP as when they last saw her she had an enlarged lymph node and he's not happy that it's still enlarged plus she is complaining of shortness of breath which he said is a red flag with an enlarged lymph node ... I never knew that. Her lesion is in a delicate area so I'm having to change dressings if they get wet or soiled and I've now used the last dressing so am super stressed as it's Bank holiday weekend and she's not back at clinic to have her stitches out for a week!

I've got a date to have half my thyroid removed, they still don't know if it's cancer but as it's lighting up on the PET scan and is now doubled in size it seems likely, my tumour markers have both gone up significantly (hundreds higher than when I still had the bowel tumour in me) so I'm glad they are taking it away!

Hope everyone else is staying as well as can be.

Maybe a for you instead penguins with all the hallucinations going on I've never heard of feroglobin, I'll ask the doctor next time I see him.

Brilliant news that your daughters op went well zebra and fingers crossed that the lymph node is nothing to worry about, doctors often give the worse case scenario just so you are prepared that it's bad news but hopefully it's not too serious. Is there a chemist or a Boots near you that you could get more dressings from just to tide you over until after Easter?

likeazebra oh you poor thing. You have so much going on all at once! I hope you can get hold of some more dressings before the weekend. If you can't get any from the GP/hospital, I've found Boots have a reasonable range. They're not quite as good as the hospital ones but I used them after I'd had my port inserted and they were fine. Fingers crossed for your daughter and for your thyroid surgery

penguins I hope you feel properly better soon so you can enjoy the holidays :)

purple yay for the critical illness money. Any idea where you'll go?

Has anyone tried fasting before/during chemo? I've read that it can help with side effects, though the research is still ongoing. I'm wondering about trying it.

Thanks Purple I'm just having the tea now. Feroglobin is just liquid iron, we get it at Waitrose, but also has things like magnesium in which maybe is stopping my pains - had them for 6 months. I test low in iron and I would check with doctor as excess iron is bad plus never know how things interact - like does combining it give hallucinations I'm mid 40s and it seems lots of women have pains in peri or menopause if you are anywhere near that age. I'm hoping that's all mine is though my doctor said I was far too young.

No hallucinations last night so maybe the illness not meds. Started shaking like crazy but gone now.

Glad your DDs op went well zebra and it looks not sinister. Hope your thyroid op goes well and they can treat things quickly if it is cancer which I hope its not.

Hope you are feeling OK today Leslie and enjoying your Easter bunnies.

I'm 34 but with all the pelvic radiotherapy I've had the doctors have said that will cause an early menopause so it could possibly have something to do with that. The side effects are worse than the actual treatments at times

I've very jealous of your bunnies Leslie I'm allergic to most animal fur and I don't think you can buy bald rabbits

My friend is allergic to animals and she has rabbits she keeps outside. She's not very allergic though.

No idea on where to go Leslie, we got married last August and we still have a 2 day getaway voucher to use. I fancy having a city break as I'm not one for lazing around and at least with a city break they'll be shops/pubs to go in I'm thinking possibly Liverpool. We live north east so ideally somewhere not TOO far away

Hi all. Sorry for my absence. I’m feeling a bit like iVampire - just sick of this whole cancer bollocks. I’ve been feeling completely rank for the last few months and I’m just a bit fed up with the whole shebang. I’m off the ‘swimming team’ as i’ve had a permanent ascitic drain fitted so no baths or swimming again which is sad and feels a bit like the beginning of the end. The chemo is making me super pukey and i’m So feeble I can barely walk to the car. Get CT report on Weds but I’m expecting not the greatest news. Feel sad for my lovely kids and husband too. Grr. I’m normally very jolly and positive but finding silver linings is proving tricky right now. Sorry for the massive whinge but better to let it out here I think than upset my family further.
TQ i’m So pleased that Caelyx is doing the biz for you. Long may that continue. Leslie hope the toe is healing and your Easter bunnies are keeping you cheery in spite of the exhausting rodeo we ride. zebra you sound like you have a lot on your plate - sending you love. purple hope you have a lovely trip wherever you decide to go. Love and best to everyone else xx

Aw Nicky it's absolutely shit isn't it? Do you have many more sessions of chemo to go? People who haven't had it don't realise how rubbish it actually makes you feel and although you look fine it feels like having constant flu. Good luck for Wednesday

So sorry you are feeling so ill Nicky and all the best for Wednesday. Please don't feel you should apologise for whinging - if you can't whinge with stage IV cancer when can you whinge. I just wish we could make it better for you and your kids.