CANCER SUPPORT THREAD 66 for those with cancer or awaiting cancer test results. Rant, rave, laugh, cry, joke, scream - whatever gets you through the day.

[TwitterQueen1]

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you have a loved one with cancer you can get support on a different thread here

For old and new posters it's very helpful if you (re)introduce yourself in your first post with a summary of your diagnosis (chemo brain is a real thing and my memory isn't what it used to be!).

On the Laxido, it was the Tesco pharmacist who suggested it to my husband when he went in to get something for me for constipation. He’s bought 2 boxes from there so guess you can just get it at any pharmacy. I find it does work. I have an orange flavour one (not sure if they do other flavours!).

One of the District Nurses did tell me it’s what the GP would prescribe but I haven’t bothered to get it on prescription.

Laxido does seem to work quite slowly for me over a few days so don’t make my mistake and take too many sachets of the stuff on one day. It then sent me the other way! On the box it says you can take up to 6 a day but I just take one morning and night over the course of a few days and that seems to work.

@Mrstraveller we definitely seem to be on the same journey. I also got impatient with the Laxido it's a fine line to balance! I ended up having to phone my kids school tomorrow to say could I possibly use a disabled space, as I didn't want to leave the loo for more than 2 mins! They were fine about it but I've learnt my lesson.
On a plus side, I can't believe (fingers crossed) how much better I feel today, so it must be the injections.
I totally need to not do too much though as I have a tendency to feel ok and then overdo it!
Hope everyone else's SEs are manageable and the sun is out, it is here. all round.

Making notes on laxido here... I've been prescribed lactulose and senna and I don't think they do a great job. Also the lactulose is vile.

Any tips for bone pain? Have sent DH out to get hot water bottles. I wasn't expecting this (maybe I need to read my chemo side effects thing again) and it's no joke!!

Keepcalm I'm sorry to hear about your business worries. I hope you sort something! I had really only started my own self employed photography business, but I had to cancel everything. I've lost so much £££ after investing heavily in equipment. It's just way too physical for me to do now. Also was literally in the process of sorting health and critical illness when I got cancer. Managed to sort dh's out, but was just waiting on a doc report for some heart issue I had years ago and then cancer happened and it was too late. For fuck sake.

Sorry I’ve never talked so much about bowel movements! Try the Laxido. I took something else before that and it didn’t work. The thing with the Laxido is you have to give it time but it does work. The taste isn’t great but manageable. The pharmacist said you should try to drink it as quickly as possible so almost down in as few gulps as you can manage.

Laxido is grim but it does eventually work. I've had 4 today so far and they make me gag every time. All the morphine they gave me in hospital has made me ridiculously constipated so I'm trying to stick to paracetamol for a couple of days without the morphine

Tahiti amazon do a rechargeable hot water bottle, I've put it on my Christmas list as it'll be handy during the night instead of traipsing downstairs to fill a hot water bottle up

Hope you're not feeling too rough Fuzzy

Pandora how are you doing?

@Tahitiitsamagicalplace keep going with the laxido it does work after a day or so, but I feel your pain.
So the horrid aches, the nurse phoned me today (I actually feel fine today, and yesterday was my last day of injections) and she said that I should try ibuprofen instead of paracetomal next time. I also had those wheat bags you can pop in the microwave instead of hot water bottles. Also try and have a bath, I can't believe I didn't think of that one till later on last week. I'm going to start with turmeric and black pepper capsules as their supposed to help your joints - checked with the nurse today and she said it was fine. Mainly just keep yourself snug, warm and well hydrated. Hope your feeling better soon. As I said, compared to yesterday I'm a different person so it does end.

Macmillan have me going to the GP to get a DS1500 form.

I've just googled. That's the form for people who have 6months ffs

Unless Macmillan know something I f*cking don't I'm NOT impressed!!!!!

for Keepcalm that would have panicked the life out of me too. Lots of people on here have talked about that form so someone more knowledgeable will come along but hugs in the meantime

And no need for the laxatives anymore. I'm now running to the bathroom instead

Never boring this is it?!?

@ranoutofquinoaandprosecco only thing helped me was baths and hot water bottles and even then I could have cried.

Thankfully it seems to have passed today somewhat and just some cramps sparks in my toes/feet as opposed to all over.

I hope yours passes very soon too

KeepCalm quite a few of us on here have them. It's basically to say that your cancer is incurable and that you could die within the six months, in theory. They tend to be "generous" giving them out as it makes the benefits application process so much easier. There's a time limit of three years so after that you have to be re-assessed, but until then you would get benefits without needing an awful assessment.

Cally I hope you're feeling better today. Did you get your CT?

for everyone feeling rubbish!

I have a reusable heat pad from Argos instead of a hot water bottle.

@WhatWouldLeslieKnopeDo thank you. I thought someone somewhere knew something I didn't!!! Thank you for explaining it better.

I should stay away from the google ....

@KeepCalm thanks for the good vibes - don't want to speak too soon, but I think that's what's worked! Currently in bed, but only just, which is a miracle, had a couple of glasses of wine, a homemade chilli and watched an episode of apprentice with the DH!
Hope your issues pass, soon. Ps that was me yesterday, didn't matter what I ate or drank! So fingers crossed you'll be ok tomorrow. I have a bit of a joke with a cancer buddy - we just always say cancers the gift that keeps on giving. Need to lose a dress size, you'll get the shits so there you go, need to put some weight on, the steriods do that! Nice Brazilian you say, oh go on then!

keep calm. Glad you got some quick replies on the form business. I had a feeling it would be something like Leslie has explained but don’t you think they should explain that when they give you the form? Maybe give them some feedback!

ranout. I’m in bed already. We went for a walk round a village in the Peak District today. Didn’t walk far but the fresh air after being more or less housebound for over a week has really tired me out. Your post made me laugh re the nice Brazilian. Yes it does seem whichever way you turn cancer gives you something else to deal with!

The Macmillan adviser was very cagey when she mentioned it to me. I already knew about it from other posters on here. But she didn't even tell me the name. Just kept saying they'd get a "medical certificate". I think they're scared of upsetting people I've generally found that Macmillan are on board with the "head in the sand" approach to cancer.

Evening all! Just dropping in to say hi and thanks for all the good wishes... I made it through and out the other side, a bit bruised and battered, physically and emotionally! But I’m home now and pretty comfortable. I was sent home with a big bag of drugs, but they managed to forget to include my antibiotics - so we will have to go back in first thing in the morning to pick them up - grrrrrrr!!

Time for a cuppa and heading to bed - hope everyone is having comfortable and peaceful evenings

Ah well done @FuzzyWhiteLegs

Good to hear from you @FuzzyWhiteLegs blinking nincompoops as my DCs would say - pity they can't deliver your antibiotics to you! Hope you get nice and settled at home.

Glad you're home & it went well fuzzy (well apart from the forgotten antibiotics!) Just what you needed to be doing 2mo, I am sure. Can your hubby collect without you having to schlep there too?

I had a GP appointment today as in a check in with how it is all going & to touch base (as I last saw them in June with my lump) I cried on the doctor (who I sort of know, she was being nice which is my downfall to having a sob) I am feeling really flat after stopping chemo, It feels like my (hideous) safety net has gone, even though I have an op to come plus radiotherapy. I need to give myself a shake as I know I am lucky to not be on constant chemo going forwards.
It has been a bit of an emotional couple of weeks as we have eventually sold the rental house owned by my ex & me (our first home together) he is still being an idiot, he has also moved in with his (very new) girlfriend out of convenience mainly I think. He hardly sees the kids & I am dealing with having them full time whilst having cancer, absolutely knackered most of the time, with no opportunity or inclination to go out, meet people etc etc, so the unfairness is grating a bit too. Sorry, bit of a pity party here. The doctor asked if I wanted to book an appointment for my low mood, I have said it is a bit of an emotional time at the mo, so will see how I am in the new year and will do if I still feel the same.
I do need to have a word with myself though & perk up a bit.

I hope everyone dealing with the chemo side effects is improving.
You're right ranout it is definitely the gift that keeps giving...

Hey noodles it sounds like you just need someone to come in and look after you for a couple of days - poor show from the ex. Hope you manage to get some down time this weekend xxx

Fuzzy I'm intrigued that you have antibiotics? I was sent home with just the one box of co codamol - that was it. Oh, and a fake boob

Thanks knicker i am pretty lucky in many respects as my Mum & sometimes Dad have come & stayed for the week after I had chemo to sort the girls out etc, plus friends have been brilliant. One came down on Saturday, took me out to lunch & then took the kids & dog out to the woods do I could nap for a couple of hours. It is the relentless day to day stuff I am struggling with a little bit (& as great as my Mum & Dad have been, I cannot cope with them here for longer than they have already been!!) luckily the girls lie in a bit, so weekends can be quite relaxed. I have a few friends whose kids are up before 6am which would totally kill me if mine did that!

noodles I suffered with low mood (understatement) since coming to the end of my chemo too... I think maybe it’s a case of it all catching up with us as we get to the end of one phase and start staring at the next...! I even spoke to my therapist about medication, and she said she felt that I have probably hit a low in terms of emotional exhaustion and anxiety - being in the firefighting phase for a period of time taking its toll - and that I would probably pick up again after surgery/pathology/the next round of info and decisions are made. I’m not sure I quite believe her, but I’m aiming to simply hang in for the next couple of weeks, as even if I had started meds, they would have taken several weeks to kick in anyway, so wouldn’t have covered this period anyway...!

knickerbocker mmmm... I think they said it was because I had a reconstruction- and a longish surgery (or something - it’s all a bit of a blur )

Dire rear for me this morning, so I had to cancel my dental appointment and can't get another one until December, which means I can't start the bone strengtheners I'm supposed to have prescribed in a few days . Ironically, they need you to be signed off by a dentist before the treatment because a rare side effect is that they might make your jaw crumble .

I've had good news from the PIP lot, in that they say I won't need to be seen by an assessor. I suspect that this is because the "incurable" word has been bandied about by the doctors, @noodles44, so try not to be alarmed: my medical team appear to be pretty optimistic about my time left.

On a more cheerful note, I've been planning my wedding this week, and I've been absolutely showered with love from everybody I've told about it. I'm ridiculously happy, and I think I must be in the top 1% of people diagnosed with Stage 4 cancer in terms of feeling positive about the future .

Lots of love to everybody, and I hope tomorrow is a better day.

noodles I remember feeling a lot like that at the end of my first block of chemo. I realised that the routine, all the checking, and most of all the feeling that something was actually being done was really reassuring. When it stopped I was lost! I then had over a month before I knew what was coming next and I was a basket case. I think it’s quite normal, but it’s really hard to explain to people as they think you must be sooo happy to be off the chemo. Err no!