I hope all is good with you.
I have been doing well since my 5th round of chemo three weeks ago, I’ve had much more energy and I haven’t been watching day-time television. I’ve even managed to do some more of the de-clutter of my room (still lots to do though), I’ve thrown out lots of stuff and taken several boxes of more useful, but unwanted, things to a local charity shop. At the moment I am de-cluttering a big box containing 10 years worth of local magazines. I bought some scrap books and I am in the process of cutting out anything relevant to the town where I live and sticking them in the books. They will become reference books for the local history group. I reckon I will have 4 or 5 scrap books of cuttings rather than a big box of magazines at the end of it, so that will free us a bit of space for me. It’s taken a week so far and I’m only half way through.
I’ve been doing little bits of art in the meantime, but not much. The page above is from my latest 16-page Teesha Moore styled journal, all the collage and much of the penwork was already done but I managed to finish the page this week with the quote.
Today I have been to see the consultant at the hospital and my final round of chemo is tomorrow. It should have been today but I wanted the specialist nurse to come to the meeting with me for support and she does not work on Mondays so last week I changed to appointment to today and the chemo to tomorrow. I phoned the nurse (she wasn’t there) and left a message on her answerphone asking her to be there today. I needn’t have bothered because when we arrived this morning there was no sign of the nurse and we were informed that she is off sick today (just my luck)!
I really hope I don’t need any more chemo after this because it has been pretty difficult over the last few months. I didn’t realise just how bad I had been feeling until I started to feel better. I just hope I don’t get ‘knocked out’ by the chemo again tomorrow.
The consultant told me that I will now be referred to the oncology/radiotherapy specialist in Southampton Hospital and he will decide if I need to have radiotherapy. I asked if I could speak to this doctor but she said in a rather cross tone “No! I will speak to him. If he wants to see you, you will go to Southampton and you can speak to him there in his clinic”. Well that’s really all I wanted so she didn’t have to snap at me, I am so fed up with just being the subject of the treatment, not being involved in any of the decision making, getting contradictory information and being made to feel like a nuisance every time I try to ask questions. I just want to have a conversation and explanation from someone before I agree to any more treatment. I have had absolutely no indication from my consultant as to whether or not the treatment is working. Maybe she doesn’t know but I’d have thought that as the cancer is in my blood then they might be able to tell from the blood tests I am having every three weeks. When I asked the other consultant about this she said in a rather irritated voice that that is NOT what the blood tests are for, she didn’t say what they are for though.
Fortunately I still think I am going to be OK at the end of this, but it would have been nice to have had some feedback and encouragement from the team looking after me. If I ever have to go through this again I think I will ask to be referred direct to the specialist cancer team in Southampton as I have not been inspired the consultants or care at the local hospital.
However I have no complaints at all about the chemo suite which is at the local hospital. All the people who work there are very lovely and professional and, although all my visits have been about 7 hours long, they have been very kind and nice to me and have done their best to make sure I’m comfortable while I’m there. There have been a couple of times when my treatment has taken longer than it should and they’ve had to stay beyond their normal finish time, but it didn’t alter the way they treated me.
So, one more visit to the chemo suite tomorrow and then … wait and see. I didn’t get a blood test form today so it looks like I don’t need any more blood tests and I’ve got no appointment to see the haematologist consultant again so I guess I just have to wait to hear from the doctor in Southampton. She did tell me that after our discussion three weeks ago she wrote to the Maxillo Facial unit and told them that I would like to see them to discuss what needs to be done about my degrading jaw bone and the tooth that was almost pushed out by the tumour. She said they should be writing to me direct with an appointment.
Gosh, I’ll be glad when all of this is over and we can just talk about art and normal life again.
Following on from my last post here is my 2nd journal video, it’s an early journal I made in 2011 and was inspired by watching Teesha Moore’s YouTube videos on her journal process.
Take good care of yourselves and I’ll see you soon.
AJ xxx 🙂
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