CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

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've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

Pandora

That is so frustrating re not booking the date for you and can see why you don't want to go through that long period of pain. I hope they manage to get it sorted asap.

This is a day for moaning

What are people doing about the flu jab? Last year I was on chemo and was advised not to have it during treatment. I booked my jab with Boots for today and waited 40 minutes for them to tell me I had to pay, despite being exempt from NHS charges. They also thought I was over 65...

Pandora that's crap.

KeepCalm It's Robinson's Peach for me!

Chemo went fine, I'm only there until about 3:30 now so it's not such a long day. I'm feeling pretty grim today though 

Well done on the weight loss Pandora. I can't believe the hospital FORGOT to schedule you in! I'd be raising hell with them.

Noodles I think I'll give Macmillan a ring again, they were really helpful with getting my PIP sorted out

MrsT moan away as much as you need to! That's what we're here for. Haribo sweets are good for dire rear

TQ I asked about my flu jab yesterday and was told we all should get it done but for anyone who's having chemo you need to have it just before you're due your chemo and not afterwards as your immune system will be too low

I think in one of the leaflets about the first chemo I had it did suggest having the flu vaccine. I mentioned it to my oncologist back in September and he seemed very relaxed about it and said there was plenty of time. He didn't say not to have it but he didn't say you must have it either! I think I've mentioned it to the chemo nurses too and there was nothing said about not having it.

I've only had "proper flu" once in my life back in my 20's but it was horrendous so on balance I will probably have it. I've booked it for towards the end of this cycle so a few days before the next one.

TQ I went along to Boots expecting to pay (more than happy to cough up the cash rather than have to go to my GP) but I ticked the thing saying I was immunosuppressed and they gave it to me for free. Lovely young man (as my mum would say ) hardly noticed he was in there (as my mum would not say ).

Felt fine with it this time whereas last year felt rough. I was advised to have it up to two days before or one day after

cross posted with purple re the flu jab.

Thanks for the recommendation re haribo sweets. I like them so will pick some up next time I venture out.

It's the payment bit I'm struggling with. I can afford it of course, but I'm puzzled as to why I should have to!

Yes surprised you had to pay TQ. I happened to book it at my GP whilst I was getting other stuff sorted yesterday so I’m assuming it will be free there.

It's the payment bit I'm struggling with. I can afford it of course, but I'm puzzled as to why I should have to!

Definitely. It makes no sense!

I'm an idiot . Have just rung the surgery and they told me to go over at 3.50pm.... I should have gone there in the 1st place. Official nitwit.

Trouble is, I'm of the generation / upbringing that silently decreed you only ever go to the doctor if you're at death's door. Sadly, this is why I left my aches and pains and niggles until it was too late. I didn't want to bother them when you hear of how under pressure they are so I went to Boot's instead.

I got the flu jab last week at the chemist in Tesco. I paid, but I hadn't had my official diagnosis yet. It's not a live vaccine so it's okay to have, as long as your immune system isn't complete buggered.

TwitterQueen, small lol at your over-65 woes . Could be worse- I've just been talking to a neighbour who has thought I've been pregnant for ages...

I booked my flu jab and Mirena coil removal today- feel uncharacteristically organised. Last radiotherapy session tomorrow, and then more anti-oestrogen drugs and bone strengtheners from my oncologist.

It's weird, I don't even feel ill.

TQ I hope your flu jab went well :) if you're not on chemo at the moment then I don't think you would fit in any of the categories to get it free. But the GP surgery can use their discretion because they have access to your medical history. I had mine the other day. And I'm going to ask my oncologist next time I see him whether I need the pneumonia vaccine because of my dodgy lungs.

Mrstraveller I'm sorry you're feeling so rough. Hopefully the various medications will get to work quickly. And fingers crossed you find a drink that you enjoy. I find having things really cold helps a bit when I don't fancy anything. I also sometimes drink gazpacho

purple sorry that you're feeling rough too I found that after a longer break it was like having a first round again. I hope you feel much better soon. And good luck with Macmillan.

pandora how frustrating. I hope they can fit you in sooner. I'd be asking lots of questions about the risk of such a long delay etc and hopefully that will encourage them to magic up a slot for you!

Tahiti I have polycystic ovaries too, though not full-blown PCOS. Also discovered by chance, when I had my eggs frozen prior to chemo many years ago now. It's apparently linked in some way to diabetes hence the need to lower carb intake. Unfortunately due to my bowel surgery I am on a high white carb diet

noodles I hope the conjunctivitis clears up quickly

KeepCalm we definitely approve of sequins

I had a bad night/morning with the pain and nausea. Luckily the district nurses came to take my blood so while they were here they gave me a morphine and antisickness injection and that really helped. I've been taking lots of Oramorph too. I'll ask my hospice nurse about pain relief when I see her next.

I hope everyone is having a good day

BitOfFun it is very weird when you don't feel at all ill

Evening lacies hope we've all had a good day. I've made my lot have a trip to a mill to look at David Hockney paintings!
Quick question @WhatWouldLeslieKnopeDo can I ask what mattress you bought and what rating do you give it? Think we need a new one!

ranout I got a Simba. I tried it out in John Lewis, but then they sold out so I had to buy it elsewhere. I didn't want to buy one without trying it. They have a 100 day free trial, but it seemed like it would be quite a faff to return a mattress.

I think I like it. It's hard to tell as I'm usually achy at night. But it's definitely better than my old one. The one I tried in John Lewis was really comfortable so I think it will be better once it's a bit worn in!

Thanks @WhatWouldLeslieKnopeDo could kick myself as I was in John Lewis yesterday, I'd DH has mentioned it then we could have tried it out - ooh err Mrs!

Sorry Leslie and purple you have also been feeling a bit grim today.

Hoping tomorrow will be a better day for all of us. It’s the last day this cycle of having the injections in my tummy so look forward to that being over until next time.

I’m expecting a sleepless night due to the increased dose of AD’s but I always get up at least once in the night anyway and go downstairs for tea and then come back up and read/listen to the radio.

My husband’s been in a different room since this cancer shite started as I would keep waking him up and he needs to be able to function for work.

Leslie sorry to year you've been feeling rough. I hope that's eased off now. You too Purple.

Well, that would certainly have caused some pearl-clutching ranout, especially if you were wearing your crocheted knickers I hope you find a mattress that you like quickly.

Mrstraveller I hope your night isn't too disrupted. It's good that you have the room to yourself so you don't need to worry about Mrtraveller. Here's to a better day all round tomorrow, especially as you won't have to jab yourself :) are you getting any side effects from the injections?

Goodnight lacies. I hope everyone manages to get some sleep, or at least a rest

I do get joint pain and aches. I think the chemo nurse did say that at least some of the joint pain is caused by the jabs.

Yes I think it would be really stressful for both of us if we had to share a room at the moment given that I spend a large part of the night wide awake with the light on!

I guess I do get joint pain and feel generally rough, and where my spine mets are it can be absolute agony. But this is where my years of surviving hangovers is starting to show its mettle 💪.

Flu vac wise, I've been playing the fun game of how and when to get my 3 year old done. When I was in for chemo last month, after some discussions between pharmacy and the nurses, they said get mine done the day before my next chemo and hers done two weeks later, as the dose for kids and over 75 is live. There's like 4 different vacs going around at the moment causing a whole load of confusion for receptionists. Finally got hers done yesterday, although again the nurse at my gp had the jab prepped until I reminded her we had agreed on the spray. So now only family member left is dh whose is booked in for next weekend.

I've got a not unexpected week off chemo this week. Originally there were 4 sessions booked, then a 5 appeared, but because it's been as unsuccessful as expected tomorrow's session is cancelled and I'm now at a loss of what to do with a day to myself while my kids are at their grandparents. So many things I plan to do, chances are I'll end up sleeping in, getting my picc line dressing changed by district nurse and then everyone will turn up. It would have been nice to be the 1% chance this was going to work but I'm looking on it as a chance to expand my low residue/fibre diet and try a banana 😱 never thought I would miss fruit and veg this much. But I did have my first alcoholic drink (baileys) since May in a little screw you to the day.

Mrstraveller - I've got the spare bed lined up and used it for a few weeks when I realised my 4am waking was me up for the day. Has anyone else been given a random assortment of inflatables by their district nurses? I've got a cushion and a single bed mattress topper thingy which can be used in the spare bed. I lost quite a lot of weight the second time I was admitted (10kg) and hit my looking like a skeleton weight, so needed the extra padding for a while. The white bread, potatoes and chicken diet (and milky bar) has helped fix it. OT might have bits to help, although as I'm new here I could be preaching to the choir.