Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

@catmomof3
I found out more about cancer on here than at the hospital to be fair. If this is the same nurse who was unprofessional last week then ask for a different one if you feel able. Call them tomorrow morning and tell them that you didn't get an arranged call back and then ask what you need to know etc. I did find that you have to be your own advocate and find your voice.

I am also autistic/ADD which is a blessing sometimes but a bloody nuisance because I miss stuff that's said to me so I have to write it down or I now ask the staff to write it down. I also write down all my questions when I see someone so that I don't forget.
Don't be afraid to ask for things to be repeated until you fully comprehend what's being said - if someone gets shitty about it then repeat " I am autistic please repeat that" ad infinitum if necessary.
Hope you get all your scans sorted soon.

@MothralovesGojira My issue is I go non verbal because I find it hard to communicate my needs properly. I just think it's so unprofessional to say you will call to check up on someone and then not esp when they have just been diagnosed with cancer.

Can someone tell me when do you meet with your oncologist? Will I even see my gynaecologist again now, or do I meet with them to find out the treatment plan? I just feel like the next steps were not 100% explained and that may of been my fault because I was in such a state and I could only manage to repeat "am I going to die?" a hundred times over.

@catmomof3
You're right. It isn't on for no one to call you when they say they will. Sadly, in my experience it isn't unusual.

You need to make sure that your records are clearly marked to make medical professionals aware of your difficulties. I'm at the other end and say what I think, often without thinking, so can be seen as rather rude! Take someone with you every time who can ask questions etc. Consider recording the meeting on your phone so you can listen at your own pace later.

You sometimes get referred to oncology once all your staging scans are done or you could have surgery first. It really depends on how your hospital is organised and what your results are but you will have a better idea once your scan results are ready. I can't really help as I have a different cancer so treatment is different.
McMillan can offer counselling fairly quickly or see if you've got a Maggie's near you who can offer support. You should have been given some leaflets telling you what's available in your area.
Also, if you don't get PIP at the moment then apply now. You have additional needs with autism.

@MothralovesGojira I actually applied for pip 4 weeks ago for my autism and other mental health issues but not heard back yet.

@catmomof3
You may need to contact the DWP and tell them that you now have cancer. You'll have more additional needs going forwards. It could mean that you'll avoid an in person interview later on. McMillan do advice on claiming PIP so it may well be wise to ask them.

@MothralovesGojira I thought you could only apply for pip if you were stage 4 with a year to live? The thought of that scares me so badly.

That's not the case - that's the fast track

Spk to MacMillan- they're the experts

@TopOfTheCliff
I consider myself practically an ophthalmologist when it comes to dry eyes 😂😂😂

Single use drops are best
Drops in day, ointment at night
Always preservative free (you build up an intolerance to the preservatives, and then your dry eye treatment is making your eyes even dryer without you knowing)

The stickiness does make me wonder though, if you actually have an eye infection and need some chloramphenicol? Tho it's probably clearing up on its own by now

Flaxseed oil - very good for dry eyes (and stiff joints) you can get it at Holland and Barrett, but you will need to take it for a few weeks before you see any effect

Specialist eye bag. You warm it in the microwave and then hold it over your eyes for between five and 10 minutes, using a special massage technique afterwards to release the oils from the glands into the tear fluid

@catmomof3
I'm not sure where you are but if you're in England & Wales then you can apply for PIP if you have cancer and are undergoing treatment/had treatment which effects your day to day life. I got awarded PIP last time I had BC and got given a 3 year award so need to reapply at the end of this year. If you are given a terminal diagnosis of 6 months survival or less then you claim full PIP on the fast track claim system. I had my claim looked at within 8-10 weeks, had a phone call to check if everything was the same and then got my award through about 4 weeks later.
If you've already put a claim in then it's worth asking if you can put it on hold so that you can submit extra information and McMillan can help you with that.

Thanks Dr @Tilllly I have all those things except the eye ointment which I have ordered from Amazon. I do use the warm eye bag when I remember and it’s great. I have flaxseed in my porridge. It all got worse with Capecitabine and my lids were raw and healed together in the night. Lots of the cheap drops sting. I’d like them on prescription. It won’t kill me but it’s annoying and I look sore!

Xailin is a good eye ointment

Won't your GP let you have these on prescription, they're non-active they're just lubricants, it's not like you're getting a high from them!!

There is actually a forum, literally called the dry eye forum, which I found very helpful when I first started

My McMillan nurse did the same.

Xailin is the only one that truly works for me: you can get it from Amazon. It's a really soothing gel; one for night and one for day.

I've had really watery eyes post chemo, it looks like I'm crying a lot of the time and if it's windy or cold they water so much I can't see properly. Annoying.

@SummerCycling yes as I understand it the results will determine whether I stay on phesgo or move onto kadcyla, and whether radiotherapy is needed.

I wish I hadn't told my wider family the details of my diagnosis and treatment as they keep telling me how stressed they are, how difficult it is to cope etc etc. They also seem to be sharing details with everyone they know, and I am getting a lot of unasked for advice. Apparently matcha tea and goji berries will solve everything.

@demivolte We recently had a discussion on the Stage 4 thread about the ridiculous suggestions people give you to help 'cure' your cancer. Some of the stories are dreadful.

I'm generally lucky in that I have a small family and small group of friends and they don't gossip, or make ridiculous suggestions. My mum is a bit of a blabbermouth though, but generally to people I don't know so I don't care too much. And I think it helps her with her own cancer treatment somehow. I have one aunt I won't tell the details to, because she gives me unasked for advice and also lords it over other people that she knows stuff that they don't and I just abhor that kind of behaviour.

I had a different nurse call me this morning and she was so lovely. She went over lots of things with me in detail and said I will be discussed next Friday at the MDT and I can either wait a week (to be told it's 100% cancer) or have her call me up and tell me what happened at the meeting which I said I preferred. I already know it's cancer, I don't need the added worry of waiting a week for another confirmation. She said after that things should move pretty fast and I'll be assigned my oncologist etc. I'll also get my diagnosis letter then so I can put my holiday booking on hold.

I'm going to remain positive, I'm going to beat this whatever stage it's at. I have things to live for.

Have a brain MRI tomorrow AM.
Anxiety is horrific.
No meds to take ( speaking to GP next week).
Any tips so I don't pass out with fear?

@Enigma52 I’ve had 4 MRIs in the past few months at 3 different hospitals. The most recent two have been at the same hospital and they have spoken to me during the scan. Saying things like “this one will take 3 mins”, “moving onto the next one, this will take 4 mins”, “you’re doing really well and halfway through”. I found it really reassuring so will ask if they can do this at all my scanning going forwards.
I hope it goes well for you tomorrow.

@Yorkshiregold how did the first Bracy go?

@Yorkshiregold thanks for sharing.
Feeling really really fragile at the moment. Legs shaky and spaced out. Hospital couldn't do my chest drainage yesterday ( lack of space ) and menopause being brutal. I can't see how I'm going to get through it.

@JlL2013 Thanks for checking in. It’s all gone really well so far. Nothing like as bad as I was expecting. I’ve had three treatments with one left for tomorrow. I’ve coped pretty well with being bed bound. The radiographers are great and the nurses on the ward have been lovely. I’m using all the pain relief on offer and I’m nearly there!

@Enigma52 Definitely tell the radiographers how you’re feeling and they should be able to help you. Like I said to you before I fully sobbed through a whole MRI. Are you going on your own? I’ve been to most of my appointments on my own but I try to speak to someone on the phone to take my mind off it when I’m travelling in or waiting for the appointment. You can do it. Sending lots of love.

@Yorkshiregold ah really glad to hear that.

@Enigma52 can you bring some music for them to play? Definitely tell them how you are feeling. I definitely recall crying through a few. Ask if they will update you when half way through. Reciting the times tables helped as well (mainly because I'm not great at them and it took ages. They will give you a buzzer to squeeze if you want to talk to them or stop the process.

I did it!
Crikey, never thought I'd become a pile of bloody jelly, aged 52, unable to string a sentence together and panicking about going in a scanner!

I feel as though I've had total personality transplant since this hysterectomy; I no longer recognise myself.

Every ache, pain, twinge sends me spiralling. My body gets hot and my heart beats out my head. What to do, what to do....

Celebrate the win @Enigma52, you did it! Well done.

I’m just waiting to be discharged. Hopefully will be in the next couple of hours.

@Yorkshiregold where are you?