Wednesday 4th

Hello,
This is Aunty A touch typing from J dictating. A first.
Ok.....so......starting at the end.

No immediate treatment. Jolly pleased that we can go on holiday next weekend, with further radiotherapy at some point on my groin, with possibly more radiation in my abdomen.
The day started well with the flight on time with a smooth transition from Gatwick to South Kensington. Made the hospital by 11am and saw Dr AG by 11.15. I believe it's so much nicer if you have to give somebody bad news or difficult news, on a face to face scenario.

Dr. AG explained that obviously the disease has progressed into low volume disease and the reason the lymph node in my groin is causing me some discomfort is the fact it is pressing on a nerve, which in turn causes pain down my leg and my knee.

The two lymph nodes which are inflamed and enlarged which are cancerous are not attached to any major organs i.e. liver or kidneys.  This is usually how the BRCA 2 mutation acts so for once this is good news.

We discussed the rising CA125 (blood cancer markers) and it seems that when first diagnosed you can have a very large tumour and not a particularly high count but as the disease progresses the counts will become higher with only a small amount of disease.  So it's better not to concentrate too much on that marker, but more on how you are feeling.

The conversation then turned to chemo.  There is no chance of me having any PARP inhibitors or going on any trials in the future as my bone marrow is suppressed due to the myleodysplasia.  When I had my first chemo my bone marrow began to change.  By the time I had my second round of chemo my bone marrow mutated, and this is irreversible.  If I never had Chemo again I could manage as I am, but at some stage when the cancer is to the point where I have no options left then they will give me Chemo.  However, there is more than a huge risk that one of the cycles will flip me over to Leukemia and there is no coming back from that.

Dr AG then had a quick consultation with Dr. AT and looked at my last CT scan.  She thought that radiotherapy for the problematic groin lymph node could easily be dealt with, but suggested that we go on holiday and let it get a bit bigger to encourage the radiation to work more effectively. You cannot revisit previous radiation areas.

Our good friend LT had been looking after another friend who has recently had an operation for breast cancer, and was just starting her first week at the Marsden.  She passed on my contact details and we arranged to meet after my appointment.  Simultaneously, another Jersey friend was also having a scan yesterday and we had arranged to meet her and her father too.  So it ended up in a rather bizarre table for 5 at a rather nice local chelsea restaurant.  It all felt a bit surreal with us three ladies talking quite openly about our past and recent treatments and how we were dealing with it in a rather "matter of fact" way.  The luncheon was brief as Steve and I had to head back to the airport at 4pm to catch the 5.15 flight.

It was imperative that we were back in the island by early evening as I had a netball match to play (AA - good grief!) pleased to say well worth it as we won (I only played half the game).

Once again I have been humbled by the amount of well wishes that contacted me during the last two days to say they were thinking of me and the level of support that I receive from family and friends (thank you Sheena your card and letter were lovely and I'm pleased I made you smile).

Unfortunately I have been brewing a sore throat/cold which has severely impeeded my energy levels (hence half a game of netball) but loved the racket ball this morning (thanks girls) and had a fabulous possibly last swim in the sea this afternoon (AA - mad girl ! :S)

Back in the door from badminton, and pleased that my PA can touch type skillfully so this blog can get posted tonight.

 I needed a hot tub after my sea swim....... just missing gin and tonic ..........

Me and Liz......BEFORE G&T

Sunday night supper.....