Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Chips thank you for that document, it's a really useful read.

@Babamamananarama I'm happy it's been useful. I found it very interesting.

Hope you're ok and resting.

I have managed to get a cancellation bra fitting today from our lovely independent lady. I've bought, tried and sent back so many bras that I think I need an expert.

I've also got an ECG this afternoon and seeing the oncologist this evening. I've set my spreadsheet back up to keep track of pre authorisation numbers for treatments.

Hope everyone else is keeping safe despite the wild weather.

I've realised I've been really lucky having read all the recent bowel talk: I've managed to get by with just the odd Immodium during my chemo. Probably jinxed myself now! I tend to sit it out when it's the other way which is probably not advisable. I have had the experience of chipping away though - on DS2 as a baby. At least he doesn't remember it!

@MrsPnut I've had the same authorisation number from DH's work healthcare for my diagnosis, tests, all appointments etc We still check what will be covered though. Hope the ECG is ok.

My mini greenhouse is still standing after the wind - hurrah!

@JeanLannes you're welcome. You need to get a form from the GP, fill in your part (name, address etc.) and then return it to the GP for signing. There was a huge confusion with mine as to whom was sending it off (me or them) so check this. It gives you free prescriptions for everything, not just cancer related things, for five years and can be renewed by doing another form after that.

@MidtoLon I found out from this group that I was entitled to ESA so was very grateful to discover this. It is £114 a week which is worth having when one can't work. No-one told me any of this information .

@MrsPnut good luck, the wheels are in motion. Fingers crossed your medical team comes up with a treatment plan.

I have just had a phone call from my consultant’s secretary (I left a message on Friday), the consultant will phone me this Friday to discuss the bone scan. I want a confirmation from her mouth that the new “trauma injury” is just that. I know that the radiologists/doctor in the nuclear medicine have already said despite this all is fine and didn’t want to do detailed imaging. BUT..: I will be able to relax a little bit more if/when I hear it from the horse’s mouth.

@MrsPnut hope you get some satisfaction from your oncologist tonight.

I haven't had as much trouble with constipation - as the opposite.

@balkanscot Hope you can get some peace of mind although I suspect it might take more than Friday's call to do that.

Trying to maintain some kind of zen state about my pathology report. I now have 2 appointments showing so probably report is not ready for the first one. Hard to say - I've got a couple of appointments I can't tell what they are for or if they are 'real' so have queried. I do wish people would make it clear what your appointments are for.

@TopOfTheCliff after further investigation it isn't the surgical glue that's driving me crazy - it's the tape holding the new dressings. I've cut some of it off. When were OK driving? I'm hoping to try at the weekend as dh is having surgery week after.

@Acinonyx2 I drove two weeks after surgery but I drive a manual and it was my left armpit that had the nodes stripped. It is sore if I drive too much even now but it is getting easier all the time.

My lovely bad mothers have sent me 6 bottles of wine, some pub bar snacks and a beautiful cup and saucer. I just keep getting random parcels in the post but it does make me feel cared about.

Hi everyone hope you’re all ok! Less than a week to go for my appointment - referral letter didn’t state where I had to go in the hospital - just rang and asked - they said I have to go to oral and maxillofacial surgery - surgery!! I’m scared now, I thought I was just going to be told if it’s cancerous or not 😢

@MamaOl93 it's just the name of the department. Don't panic. Your consultant will be based there. That's all. It doesn't mean you will definitely be needing surgery.

Hi @MamaO193 the waiting is always the worst part. Oral and MaxFax surgery is just the name of the speciality. They are surgeons but won't be doing operations in the clinic. The likelihood is that one of three things will happen.
The first is they take one look, reassure you it's nothing to worry about and send you away delighted.
The second is that they take a look, decide they want a biopsy or some tests which they do straightaway and give you another appointment for the results.
The third possibility is they want to do tests or a biopsy but have to bring you back for the tests and again for the results.
The likelihood is that unless it's the first scenario that you won't have a final answer on your first visit. Lots of waiting and worrying is probable. Have you tried using the Calm or Headspace app to help you cope? I found the first very good.

For some reason I'm exhausted today. I'm not sure why although I did do a very energetic medicine ball class this morning so maybe it was that. Having reread Dr Peter Harvey's article as posted above I'm chilling with the new normal!

After speaking to the nurse about my itchy boobs, I've taken off the dressings, showered and sent her photos of them . I must be very careful not to send those photos to anyone else.

@MamaOl93 it is hard waiting. Top is clear about the options though.

@ChipsandKetchup my hip is an ongoing long saga that started with a car crash 33 years ago. I have arthritis but don't want surgery at the moment. I have a brilliant physio who is using LASER on me to reduce the pain and making me work very hard at strengthening the muscles. I am also cycling, gardening and going to a personal trainer and getting fitter and slimmer but exhausting myself and am in a state of permanent muscle aches. It is quite good at distracting me from the aftermath of cancer as the minor nerve pain from breast and axillary surgery is nothing in comparison. I'm just a bit sick of my useless body!
Regards to all, I hope side effects are minimal this week.
I've got Herceptin 11 tomorrow so have a trip to the Oncology Unit to look forward to.

@Acinonyx2 the breast care nurses told me 4 weeks after surgery for driving, I'm sure I could and in fact I have put my car in and out of the garage when my daughter has left it out , but I'm worried I'm not insured.

@BadEyeBri @TopOfTheCliff @Acinonyx2 thanks all, and thanks for all the options I’ll be given - literally haven’t known what to expect xx

@KitchenFishCurry yes the big worry is the insurance risk if anything were to happen. Might have to put poor dh in a taxi - it's very early in the morning to ask anyone else. Then neither of us will be able to drive!

@TopOfTheCliff it's great that you're so active. I put on nearly a stone over the course of my chemo and I don't have the energy to shift it. You sounds bloody inspirational so I will take a leaf from your book and get started. Somehow. 😳
Ive got Herceptin #6 Thursday which is always a joy 😬

Arrrgh just need a rant. My MRI scan was cancelled today for reasons that aren't quite clear yet. Have been told they won't be able to reschedule for at least another week which will put back my next consultation but also my surgery. Apparently there is nothing they can do....

@ChickandLamb how annoying and upsetting for you, I would be so upset. This is the problem, everything hinges on the next thing so if one thing moves, so does everything else and it is so frustrating.

Back home after a long day. They would not give me my chemo until my port had been looked at by ultrasound. They can’t seen an abscess or signs of infection but it is very swollen and sore. Anyway I am armed with more pain killers and a circle of pen.

Happily my neutrophils had doubled from their pre-chemo level so was pleased with that and I have a full print out of my bloods. My blood pressure was the highest ever reading I’ve had though which I put firmly down to DH’s driving on the way!

@ChickandLamb - I am sorry to hear about your mri being cancelled. You must be understandably upset and cross.

Hope everyone is doing ok.

@ChipsandKetchup have you heard of the SafeFit trial? It is run by the University of Southampton and Macmillan with an online Cancer trained fitness coach and instructor. It is free and it is absolutely brilliant. I am coming to the end of 3 months of classes and I shall miss my instructor lots. She has become a real friend! I have lost nearly 10kg so far and have come a long way. Have a look online for SafeFit, anybody with cancer treated on the NHS can sign up.

@ChickandLamb sorry to hear of the delay. It's just infuriating!

@TopOfTheCliff I will look that up, thank you. I've enrolled in a 6 week class with Fighting fit for cancer which is a charity that do something similar. So far it's been some stretching and Pilates so I imagine that will ramp up a bit.

I'll look at your suggestion too. Thanks!

@Acininyx2 thanks for useful antioxidant info.
@MrsPnut. I hope you’re able to organise private treatment very soon.

I am 2 weeks post first chemo - epirubicin and cyclophosphamide, and . my follicles really hurt which I presume is the precursor to the hair loss. I have some maybe silly questions. Would the tingling/soreness ease if I cut my hair short? Does the soreness go once all hair is lost?

@Fizzy thank you. I am feeling really like I'm losing it to be honest. I needed the stepping stones of the next appointment to feel sane. I've been told the MRI needs to be done on certain days of your cycle and I'm now at the end of that window which is also upsetting. I have to wait until Thursday to have another conversation with my consultant about the best way to go forward.

@Lunificent if you have long hair having less weight might ease the soreness but basically it will stop when it falls out. The falling out is easier though if you cut it short first.

@ChickandLamb that is a royal pain and I know what you mean about having the next steps and dates clear.

@JeanLannes did you get any antibiotics? I had a low-grade port infections for 6 weeks that was constantly dismissed until the GP prescribed antibiotics and it cleared up in 48 hours I wouldn't dismiss infection outright - see how it goes. I was surprised when you mentioned previously how sore it was.

I've had some crazy BP readings at hospital

My tits still itch. I feel like Lady Frankenstein with my reassembled boobs and bald head.