Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

It does seem a long time. The hospital I am going to for a second opinion said that they were going to chase it up the day after I had it . That might hurry it up a bit I suppose.

I had originally requested the scan 6 weeks ago but was told there was no need for it at the time. After I asked for a second opinion it was " have we not done a PET scan yet?"

Yes the consensus seems to be that PET scans give way more details on any spread, etc. i hope we both manage to get reassuring results quickly.

Let's hope so royal

Morning everyone

One session done although I am feeling a bit blurgh. All went OK but felt a bit fuzzy headed about half an hour after it finished. Managed to eat a reasonably decent meal but by 9pm was feeling about 5 out of 10 on the sickness scale. Went to bed but had terrible night - banging headache, felt really sick (about 8 out of 10) and very restless, couldn't get comfortable. Luckily wasn't sick.

I had Emend yesterday and have got another two of those to go (every 24 hours). Also on Domperidone and have got some other ones for "severe nausea and sickness" which I didn't take last night as I wasn't been sick but maybe I should have done.

Still feel sick but about 4 on the scale now and managed to have a couple of biscuits and one Weetabix this morning.

Am going back after lunch for a Neulasta injection so will mention it to them then as I was told I really shouldn't feel sick so maybe they will change something.

Trying to keep fluids up - aiming for 3 litres but mainly water, squash and flat coke.

Just thought I would give an update. Hope you are OK today leslie.

Hi Cookie glad your first session went ok. The steroids do wreak havoc with your sleep pattern I am afraid. Try chamomile tea.it is beneficial for us cancer patients besides having calming properties.
Hope everybody else is as good as can be.
Tutti if you are reading, I do hope you are ok.

What's the one for severe sickness Cookie? I'm a bit of a nausea pro so happy to give some tips. Is it FEC you are on? I think others have had nausea too. I think the medics are a bit deluded about chemo side effects to be honest. They're quite often surprised when I say I feel a bit grim. Whereas I don't think it's at all surprising when being pumped full of poison!

The regime I'm on doesn't normally cause nausea but I have an exceptional ability so I'm on quite a few things and it's relatively under control. My onc remembered from last time so prescribed extra meds straightaway which made it all a lot easier. I couldn't have Emend before, but I have it now and it seems to be quite good. I still carry my sick bucket around the house and in car journeys I've only been actually sick a few times this time round.

I always carry a salty/carby snack with me as I find that helps settle my stomach. Those little packs of mini Ritz crackers are quite good for that.

Good luck with your injection. I hope you feel better soon and that they can advise in the nausea

I've been wondering about Tutti too. Hopefully quietness is for good reasons

Good idea to Christmassify the thread royal I like the sound of your hair. Was it curly before? I don't think worrying/not worrying is a good/bad sign really. I wasn't worried before any of my results and most were fine, obviously latest ones were not prior to the scan that showed my recurrence I had this funny feeling that something was wrong. But it wasn't really an anxious feeling, more of a calm "knowing". We were going on holiday the day of the MDT and I was completely convinced that they would phone and call me in for the next week. But then I didn't hear anything for a month so assumed I was fine. I don't know if I had subconsciously picked up on a symptom that I'd had the first time I was diagnosed, or whether it's just a coincidence and I would've felt that way if my scan had been clear. I had been feeling a lot healthier actually what I'm trying to say is, you can't really read into how you feel as it's impossible to be objective. I hope you've got nothing to worry about

chewing and royal I have my fingers firmly crossed for you both. I had a PET as an earlier this year and they managed to get my results in one week to discuss at the MDT, with some chasing from my team.

I'm feeling a bit groggy, but not too bad. I have some Pombear snowmen to nibble on. Everything tastes funny as always for first few days. I have also taken to drinking gazpacho I highly recommend it. It helps the nasty taste and satisfies the craving I get for slightly vinegary flavours!

I have rambled on ridiculously so will stop there. But I hope everyone has a good day!

Hi Leslie thanks for asking after me, I'm doing ok trying to find out what normal is again. Hope you're managing ok x

royal and Leslie Tutti is bearing up through the chemo but has good and bad days like the rest of us. She unfortunately won't be posting on here again as she is too hurt and upset.
She was accused of being disabilist by more than one poster over something she said a while ago and they contacted MNHQ about it
I would add that I have a disabled child and have never found any of her comments offensive at all.

Hello all,

Cookiepuss

When I felt really sick but wasn't actually being sick I found that mint essential oil in a diffuser really helped, I don't know why, but it did. Also drinking cold mint tea and putting ice in all my drinks. Worth a try if things don't get better ?

I have decided to have my hair trimmed tomorrow !

cookie sorry to hear you're struggling with nausea it's really no fun. I had Emend with EC chemo and it seemed to do the trick.

I've not been able to have it this time round but have been given levopromazine, cyclizine and ondansetron which seem to help. They knock me out for the whole of the day after chemo which is better than feeling sick!

Sorry to hear that tutti won't be back. I've been thinking of her and how she was getting on

leslie hope you're feeling better over the weekend

pimmsy good luck with the haircut and yes to ice!

Some people swear by ginger. I'm not that keen on it, but I did eat quite a few Lotus caramelised biscuits the first time round. I'd completely forgotten about them. I went off them for quite a while afterwards as they reminded me of nausea.

Thank you minty how are you?

Thank you for the update chewing. That's a shame. I saw the post you are referring to and was pleased that the offensive word was changed. But I don't think anyone would want Tutti to stop posting. I hope she feels able to return should she wish to do so in future, and that her treatment continues to go well. FWIW I think it is best if people report things that concern them for any reason to MNHQ so they can decide whether it breaks the guidelines. In the past we have had some arguments on the thread and it's better to avoid that if at all possible!

Sandwich good luck finding your new normal feel free to post here whenever you need to though! Once a Lacie, always a Lacie

leslie I had my 7th chemo dose yesterday, all being well the last one will be next thur. 4 herceptin down, 14 to go! Loving my port as you predicted although it always seems to catch me by surprise when I'm getting dressed.

I've been doing odd days at work over the last few weeks but don't have much stamina now and get tired very easily- all par for the course at this point in treatment I guess.

Like first time round I haven't really given myself the chance to deal with the diagnosis so will give that more time in the new year. Other than herceptin I probably need to have another op to balance my breasts and a nipple recon so not out of the woods yet

Yippee minty very nearly there! I'm glad the port is working well. Though sorry you'll need another op. It all drags on so much doesn't it! yes, I think the tiredness is unavoidable really. Be gentle with yourself. Though I'm sure the mental stimulation helps. It sounds sensible to dedicate some time to dealing with the emotional side of things, once the majority of the treatment is out of the way. It's hard enough getting on with the things you have to do when you're in the midst of treatment.

I've approached it similarly, though there isn't really an after. Or not one I want to think too much about though I've found that my mind must have been processing it in the background, without my silly conscious mind getting involved! Much easier that way. I sat down with my counsellor this week to discuss something I thought I'd really struggle with. I very rarely cry but I thought I might. But she just asked a few questions and as I answered I realised that I'd already made the decision and come to terms with it. So you might find that by ignoring the problem long enough, it really has gone away disclaimer: this is probably not the most psychologically sound advice...

Hello all, been reading how you're all getting on and it's really inspiring. Hope the scans, chemo, etc. work out for all.

Just an update from me, my op (L mastectomy + DIEP recon) did go well. I had very low blood pressure the day after so was unable to get up the next day or move about in my very hot bed. The patient-controlled anaesthesia IV line was making it worse. The day after, not much progress, still weak with catheter and cannula. Worst 48 hours ever.

Now doing laps around the ward with two Christmas-sy drain bag holders. These along with bright green non slip socks and long white TED stockings make me look like a demented Christmas elf limping around. Plus I'm small (5 feet high, 48kg).

It takes a lot out of me though -- so just waving to everyone!

Also a question, and apologies if the answers are obvious/easily Google-able.

Having been diagnosed with breast cancer, an I now a disabled person? Can I or my husband (if with me) now park on disabled spaces? What are the rights and benefits I should look out for?

My work has given me 8 weeks paid medical leave. If I had been in the company more then 2 years, this would have been 28 weeks. Is there room for me to negotiate more paid leave? Think I need it for chemo and focusing on my health.

Waving back java sorry you've had a rough few days, but hopefully you're on the mend now. It's surprising how exhausting even the most basic activities are after a big surgery, so be gentle with yourself. That sounds like quite a stylish combination

java you are now protected under the Equality Act 2010. You may be eligible for benefits of various kinds depending on your needs, income etc. You'd need to talk to a benefits advisor. Macmillan might be able to help. Your employer will need to make reasonable adjustments for you. I have no idea about negotiating further leave. I suggest you contact Macmillan or Breast Cancer Care for more specialised advice when you are out of hospital.

You cannot park in a disabled parking space without a blue badge, which you are not automatically eligible for. I've only heard of one person managing to get one for primary cancer treatment. I think you can apply for one from your local council if you need one.

Have you got your medical exemption card for free prescriptions?

Macmillan information about benefits, employment etc.

Breast Cancer Care finances and practicalities

java I had the same op as you back in Aug. I have low blood pressure too but was lucky I could still get up the next day. My big problem was taking a funny turn after a dose of antibiotics and having the crash team at the end of the bed!

It's a tough op but 4 months on I've no regrets. Little niggles (to be expected) and a couple of 'tidy up' ops to go but generally I'm very happy.

As to disability, as leslie says you are protected under the equality act but won't generally be entitled to a blue badge. It would be worth checking with your work if there is any flexibility in their sick policy for cancer. If nothing else they should be able to allow you time off for hospital appts.

leslie I suspect I may be following your approach with all this, if I ignore it enough it might never have happened!

minty have you had any counselling? I've never been keen, but after my recurrence I decided it would be sensible to have someone to discuss the darker stuff with as my family aren't ready to talk about it yet. It's been quite helpful. Though tbh we got through the deeper stuff in the first few sessions and now I always struggle to think of things to talk about. (I was a bit disappointed last time when I didn't need to weep and wail for an hour as I hadn't prepared anything else to discuss!) my counsellor is lovely though and has promised she will support me until the end, which is very reassuring. I really do recommend it though. Even if you just have one session and decide it's all "sorted"

Hey Lacies, I've been lurking and trying to keep up. Cookie, hope you've got the sickness under control and you're managing ok. Minty, knocked out sounds good! When I was talking to the nurse about my mastectomy and recon, I said I fully expect to be as off my face as possible. Has anyone had any local anaesthetic block from their surgeon? I asked the nurse and she told me they'd get the pain under control, but I don't want it be out of control in the first place. I haven't had GA before, and I'm terrified of waking up disoriented and in pain. Actually, I'm terrified full stop.

Hey Lacies, I've been lurking and trying to keep up. Cookie, hope you've got the sickness under control and you're managing ok. Minty, knocked out sounds good! When I was talking to the nurse about my mastectomy and recon, I said I fully expect to be as off my face as possible. Has anyone had any local anaesthetic block from their surgeon? I asked the nurse and she told me they'd get the pain under control, but I don't want it be out of control in the first place. I haven't had GA before, and I'm terrified of waking up disoriented and in pain. Actually, I'm terrified full stop.

Oops, once again, posted before I was finished! I've been referred to a psychologist, but it doesn't look like I'll get an appointment before I'm admitted for surgery, which isn't very helpful. I need to find a way to deal with the fear and anxiety, it's horrible.

Oops, once again, posted before I was finished! I've been referred to a psychologist, but it doesn't look like I'll get an appointment before I'm admitted for surgery, which isn't very helpful. I need to find a way to deal with the fear and anxiety, it's horrible.