Hello Everyone – it’s a bit of a long posting I'm afraid
Sorry not to have been in touch, I know some of you have been on heckle pins (great expression) regarding news, but it has been so frustrating that I lost the plot for a while.
Well what can I say? Lisa’s nails, skin and feet problems are nearly as bad as ever even though chemo has finished. She had her consultation with the surgeon on Friday 27th Feb and pushed to have her surgery as soon as possible. Well be careful what you wish for. We had a very low key family celebration for my 60th birthday then on Thursday 26th March Lisa was told she could have her surgery that Saturday which would have been great had it not been for the fact that I was flying out to Lapland that day for a long weekend courtesy of Duncan, stress stress stress but in beautiful surroundings.
Lisa went in for her op and had the last of the tumour removed on her left side, some exploratory (and it would appear totally unnecessary) surgery on her right side and the lymph nodes removed from her left side. She came out pretty bruised and sore as you can imagine but I got a text from her saying “all the nasty stuff has now gone” and it was a good feeling. Then against all odds we had a fantastic display of the Northern Lights and raised a glass of……. Hot chocolate – it was minus 10 after all – things seemed to be on the up at last.
She was out and home very quickly with all going well until there was a set back when she was taken back into hospital because the wounds were infected. The infection was serious but they were loath to keep her in hospital as three wards had been closed due to virus infections so they gave some very strong antibiotics and another drain for the gunk and sent her home.
They also gave her the results of her tests and said that they had found that three of ten lymph glands that had been removed were infected with cancer. This came as a thunderbolt. There was talk of more surgery once the infection had gone. We felt we were back to square one. Another appointment was made for when her surgeon came back from holiday and we had a rotten week of feeling terrible. It wasn’t helped by being told that during the surgery her BS levels had dropped dramatically and there had been an “emergency”.
One bright spot was that Lisa's wounds from her operations had cleared from the infection enough to stop the flow of gunk coming out but this had been replaced by a torrent of lymph fluid which was keeping the wounds wet and so they weren't healing. The doctors and nurses were stumped and were prepared to do the let's wait and see approach. I wracked my brains to think of a way of allowing the fluid to drain but keep the wounds dry, what would do that? why of course Pampers - if the adverts are to be believed they keep the skin dry and absorb the wet. So we got some, replaced the dressings with lumps of Pampers and two days later nearly all were all healed up - bingo!!!!!
The constant pain, the side effects of the strong antibiotics and the lack of progress with the wounds had brought Lisa's spirits lower than at any time since she was diagnosed last August. Luckily by the time she saw the surgeon again she was off the antibiotics and the Pampers had worked their magic so she was ready for a fight over all this mismanagement and conflicting information, grrrrrrrr.
Some good news was that what we had all feared the most, that there were new cancer cells, was not the case and what we should have been told was that these were old cancer cells in her lymph nodes and were now all gone - what a relief!!!!!!.
To condense the meeting down to a few sentences - The surgeon confirmed that although she had excised a lot of tissue the tumour had hidden part of itself further than the scan could reach and was still larger than expected so she may or may not have removed enough of the surrounding area during the operation. As a result Lisa was to have the wound reopened and more tissue excised then have radio therapy to clear up the last vestiges. Her new operation will be on 7th May (just before Ian's birthday so we are sticking with the pattern of memorable events being ruined).
They accepted that she had contracted her infection in the operating theatre and that she should have received better treatment post surgery. They were stunned by the Pampers solution and will pass it on as a good idea for other post op patients with similar problems - what planet are we on?
One other piece of worrying information was that they have tested the live cancer cells with various drugs and have found that while the cancer is very aggressive it is also unusually resistant to conventional treatments and only the high dosage of chemo had worked The surgeon also said that it shows that whatever Lisa has been doing to help herself she's been doing it right and could she pass it all on.
So it's two steps forward and one back but it could have been so much worse. Lisa is feeling very much more positive and has started planning things again –
On a very bright note - The Carefree Holidays for Carers have started with our first families arriving in May and June which is great and shows just how organised and strong Lisa is to have sorted all this out while she’s been so ill. One family is a Dad and three young children who have been left without their mum due to breast cancer and another is an older couple where one of them has just come through a chemo experience similar to Lisa’s. They were nominated by friends and sponsored by individual fund raisers and this seems a good way to go for us as the main charities seem to want a lot of forms completed both by us and the carers. It’s only a week in a caravan not the Crown Jewels!!!
I will be only too pleased to get any advice from any of you who have experience of setting up a charity please as this may be the way we need to go.
As always thanks for your positive thoughts and support. We now have a huge ring of good will and positivity surrounding us and I know that without these we would have sunk without a trace ages ago –
Hope the Race for Life goes well Prinny,
Enjoy the sunshine everyone
Love
Annette
