Latest phone appointment

Thankyou x

You are doing so well and we all just keep going. Exercise is definitely good. I walk my dog every day and when I try and jog  a bit I can get very breathless but I still give it a go and feel better for it. I will do what I can while I can 

I try and live for today now xxx

Thinking of you Lilly. Keep on keeping on. Rainie x

Thank you. Had a lot of pain in left leg hip knee and thigh last few days so taking paracetamol. But still managing to get out- lovely Sunday lunch at eldest sons today- walked there for exercise!

Good to get out and keep going. Lovely to eat out with family. I appreciating out and seeing people now more than ever after lockdown xx

Lockdown was so hard, yes, being unable to do stuff, see people. Especially family. I have 4 children and only one lives close by.

One son down this weekend and his partners a nurse so that’s handy !

Agreed to chemo and it’s all been whirlwind, got blood test Monday then Covid test. Took a while to pin somebody down to give decision, seem to be a few working from home. Still not managed to get cardio gram results but assume it’s ok

However chemo starts next Friday, 

Good luck with the chemo Lilly. Will you have something nice to concentrate on - music to listen to perhaps? Rainie x

Good luck with the chemo.

I had to go for a PCR before I start my radiotherapy we will be doing our treatments at the same time x

Update

Booked car ferry, son took day off to take me, girded loins, book and headphones for music with me.

Arrived for appointment.

Gave receptionist details, who then informed me my appointment wasn’t for another 3 hours! I said no, I have the information for all 3 appointments, directions to chemo building car park etc and it’s at 12.

Also my mixture wasn’t ready and there were delays at pharmacy that were currently of 30 minutes so could be further delays

Was taken through for first f2f ever with oncologist, had good chat. Told her also  I couldn’t wait til 3-330 for treatment as ferry etc was booked. They offered me today early, again I declined. 

Anywayy upshot is I start treatment on 2nd appointment date. This means another CT scan, blood test and Covid test.

I was mentally and physically drained and so upset and angry that nobody had informed me of the time change. If I lived close by it wouldn’t be an issue.

The irony is when I got home there was a letter with chemo schedule and the time that gave me was ...... 930am not 12 or 3oclock !!

The only good news was my echocardiogram showed a strong healthy heart

I made right decision for me

Hi Lily,

It is all so frustrating and upsetting especially when you are not feeling well and having to travel like you have.

they could be far better organised and we just have to take it.

my PCR has to be repeated as they have postponed my radiotherapy a week as they hadn’t done the planning. There are places 10 minutes away from us but they send me to somewhere an hours drive away. I asked if I could go somewhere nearer. They said only if I book it myself . I looked into that and I would have to pay myself and they would not notify the hospital only me. So we will do the drive again for the third time in a week  !

I have the repeat PCR Monday and start the radiotherapy on Wednesday 

I hope the radiotherapy helps my headaches as they are getting worse every day despite the morphine