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!).

Well think I’m going to have to abandon my plan to see if they can bring chemo forward at Christmas. Checked my appointment card and remembered the oncologist wanted to see me again before I see the surgical consultant and it’s on the day of my chemo. Never mind. I’m not too bothered about it.

Hi Caz I've got a couple of soft bras from a brand called Sugar Candy and I live in them. First day back at work for me today post op, with my fake boob. Feeling a bit self conscious but at least ityyhe right weather for layering up!!

Question for those of you on Tamoxifen - have you found it messes with your periods?

Happy Monday everyone

Have a good day at work Knicker - sounds like you have recovered well?

Thanks Mrs. Although I am currently at the mercy of SWTrains...

I've recovered in fits and starts - I have a haematoma behind the scar which needs draining every 4-5 days. Not painful really but it gives me a very strange sensation round under my armpit that painkillers don't quite touch. I guess it's all the nerves etc trying to readjust! Anyway getting back in the car on Thursday helped my mental state of feeling stuck at home although I'm not up to long journeys just yet! (Hence the fecking train) 😬

Fobbed off yet again by the PIP team . I supplied all info in August and despite a call last week with the Maggie's benefit advisor and another one today, all I get is "I don't know what's going on, I'll have to talk to an advisor, someone will ring you back." They never do of course .

knicker hi, I spotted your question re periods on tamoxifen. I was diagnosed in 2014 and don’t post here much anymore but I wanted to say yes it does affect them. In many women it will stop them altogether and in many cases will put you into menopause (depending on your age). I think mine stopped after about 3 months.

Hello mrsrhodgilbert lovely to "see" you... hope all well after your hysterectomy etc...
knicker I don't post much either as my active treatment finished last June. But I hop on if I think I can help. I have found tamoxifen fine... I still have periods... but lasting two days... and slightly more regular and less frequent. I used to get 4/5 days Of "joy" every three and a half weeks... now it's two days every 28 days... frankly a vast improvement. Not sure if it's relevant but I'm 45.
I was worried about weight gain... but that hasn't happened.. Tho I am.careful and exercise a fair amount... and my appetite did increase but I firmly ignores it.
The only "con" so far is some of my toe nails have fallen off... Google (Yes... sorry... I know I shouldn't!!) suggests it coukd be tamoxifen... but equally I did the moonwalk and i suspect it could be that...as my trainers definitely didn't fit brilliantly...ahem!! Anyone else with "tamoxifen toe??!!!
While I'm on...flowers and chocs for all.
leslie I hope you're getting to grips with the oxygen etc.. thinking of you
twitter I think you're being v restrained in your PIP post... that's outrageous and the last thing you need
Right.. Will stop waffling... and get back to the "day job" waffling... today I'm researching loneliness for an article... heart breaking but also uplifting the amount if help that's out there...and people volunteering etc...

Someone did ring me but now I'm not just angry I'm really upset too. Apparently my telephone application was refused and they sent me PIP 2 forms. They didn't tell me this. They then contacted my onc nurse who incorrectly told them I was stable. They didn't tell me this either. My PIP 2 was also rejected - again without informing me, so I've had no opportunity to challenge it. So I've had to go through yet another horrible phone conversation with me trying to tell them how ill I am and them not believing me. Crap, just crap. I'm going to ask the Maggie's advisor to help me deal with it when I'm up next. I can't cope with telephone calls with people disputing my diagnosis and me trying to persuade them I'm not lying.

TwitterQueen I am absolutely furious on your behalf

@TwitterQueen1 diabolical. Can you get your MP involved? Ours is quite responsive I'm in West Yorkshire.
My sil is in Lincolnshire and here's has been helpful with her application.

Oh TQ I'm furious on your behalf I honestly thought it was all sorted and I can't understand why they didn't tell you that you'd been rejected. It's an absolute shambles I'm sure Maggies will get it sorted for you

Bloody hell TQ that is all you need. Forms are not great to complete at the best of times. I cannot believe how long & complicated they make it and that you have to start all over again with it. Can you get your consultant (or onc nurse) to call back and update them? Would that help speed up the process & maybe reopen the closed PIP claim to save redoing everything? I hope they backdate all this for you too...

TQ. I can’t believe this. Also angry on your behalf. I hope you do have an MP who can help & the Benefits Advisor can cut through the crap here and get it sorted

I can't face crying down the phone at anyone else. I'll either write or ask Maggies to do it for me. Tx all.

Hi freddie yes I’m ok thanks, I made a good recovery. I think I’ve got about six months of treatment left with the final five year mammogram next April. I’ll be very glad to get off the anastrozole, but probably also terrified to be set free. How are you?

TQ although I’m not posting I do read every week or so and I’m so sorry about the crap you’re going through, I’m stunned about your onc nurse. I know it’s completely different but when I was struggling to make bupa believe I needed gynae surgery in the spring it finally took a very curt letter from my oncologist to make them believe and understand the situation. He was pretty annoyed ( not with me) to have to write it but it worked.

leslie I can’t leave you out, I have been watching with concern your latest antics. I hope you’re getting more comfortable, did your sister make it? Sorry I’ve missed a few pages I think.

Evening all

I'm also furious on your behalf TQ good idea to let Maggie's handle it. What a complete shambles!

purple how are you faring?

Knicker how was work? That haematoma sounds like a right pain

Caz I hope Macmillan have some useful advice. You might just have to let things slide for a short while and just do the bare minimum. I hope the diazepam helps with your MRI

freddie sorry to hear about your troublesome toes. Have you seen a podiatrist?

mrsrhod lovely to hear from you :) how are the DDs? And you, of course. I hope you've been able to get back to "normal" after all your gynae issues.

My sister did indeed visit. It was so lovely to see her :)

My wheelchair arrived today. I will probably use it to go to my oncology appointment this week. The parking at that hospital is a nightmare and I don't have a blue badge yet.

Waving to everyone. Sleep as much as you need to and don't push yourself too much if you're tired. It's usually only for a short while :)

leslie I've done precisely nothing about the toes...sorry to be rank... but the new nail has already started growing when the old one drops off... so I presumed it was fine. Should I really get it checked???!! I hate them so much that I just layer on more nail varnish....eeeeek!!
So pleased you saw your sister...
Night night all...

I had my 4th chemo today (hence why I'm up at this hour!) and I feel ok, the next few days might be a different story though

Glad your sister managed to visit, my brothers been fussing over me which makes me feel guilty as he has other stuff to be doing. Did you manage to apply for your blue badge Leslie? If you don't want to go out to get your passport photos done for it the app I used was called PassportPhoto and you do it from home

TQ I’m so angry on your behalf. Your CNS should know that PIP will try to catch her out and worded her response more appropriately. Stable can mean so many things and so should be followed up with a reminder of what stage 4 cancer means in terms of prognosis. I’m very upset for you and would definitely mention it to her and your oncologist at your next appointment.

There is lots of inconsistency in how willing oncologists are to sign a DS1500. I asked the oncology registrar if I was eligible for a DS1500 and he said definitely not, book an appointment with a benefits advisor and they will take you through the forms. When the benefits advisor saw I was stage 4, he emailed my BCN to see if I could get a DS1500, she checked with my consultant and she had no problem authorising it.

Tx MySillydog I had no problem getting the DS1500 and sent it to the PIP team in August. Apparently I'm still not ill enough.

Thank you Leslie, I'm going to try and get as prepared as I can before the op, fill the freezer with easy meals etc, so that will keep me busy in the run up to the op. I had a minor panic about the MRI last night, but I think that was just tiredness. My sister, BIL and nephew are visiting this week so that will help take my mind off of it.

Freddie, my big toe nail fell off when I was doing a long distance walk a few years ago. I think it was because my nail was too long and was hitting the front of the boot. It was gross, but the new one grew back fine.

Caz make sure you have a hot water bottle for when you get home, they really help if you have any pain.

My sick pay ran out a few weeks ago and I've just spoken to Macmillan who have told me to apply for new style ESA, unlike PIP Macmillan can't do this for me so I'm guessing this won't be as straight forward as I was hoping it to be

Ugh I've been on hold to ESA for 27minutes... I knew this was going to be a nightmare

TQ that's really awful. I hope you get sorted asap.

MrsT sorry the dates haven't worked out, I hope they may still delay the chemo bit though if you ask.

I had a bit of good news yesterday. I had an ultrasound to check the progress of chemo ahead of booking the surgery. The armpit tumour has shrunk from 23mm to 11mm and the breast tumour, which was 7mm, isn't detectable by ultrasound. The Radiologist only found the clip which marks its location. I've still got 3 rounds of the targeted Docetaxal/Perjeta/Herceptin to go, so it's looking good for it to be virtually shrunk away by the time they operate. Next chemo is tomorrow, I'm nervous about ending up in hospital again but the consultant said it may never happen again or I could end up in hospital for a couple of days each round. I'm hopeful though as I've got the right sickness meds this time and I'm going to make sure I take the Filgrastim as early as possible in the morning from Day 4 to give my WBC the best chance to recover.

Hi Symphony

That’s very good news. I am on the same drug combination as you. I’ve got 2 more to go. My breast lump was a lot bigger - I think about 3.5 cm and for the first 3 rounds of EC it stayed the same. I do seem to have had a good response to the Herceptin/Perjeta/Docetaxel combo like you and think this is why surgeon is now saying he could do lumpectomy rather than mastectomy. Fingers crossed it reduces even more! To be honest I have no idea about my lymph nodes apart from the fact they are all being removed.

I understand being nervous about the chemo. I always have a bit of dread the night before. You might find that if you can keep on top of the sickness you will feel so much better in yourself and won’t need a hospital visit this time.

Xx