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I posted this in The Scrapbook today and thought I'd put it here as well...
After playing my ukulele I often do some very simple and repetitive strums for several minutes as a kind of meditation.
Yesterday I was alternating Am to A chords and today tried it again with some vocalisation, harmonising, something I had not tried before in this way. I found it quite expressive and will definitely be doing more.
Here's a link to the recording (3 mins 51 seconds)
It's a while since I posted anything other than music stuff. I suppose I want to say, "I'm still here". I update my profile bio now and then, but I felt like posting here today, for no particular reason. Maybe this will help release something, some thought or idea or emotion, that's trapped inside me.
Like a lot of "incurables", I have no real idea how long I have left. About a year ago, my visits to my oncologist changed from 6-monthly to 2-monthly... I reckon that was...
I thought it was about time I brought this blog up to date.
I was originally diagnosed in February 2017. I had a TURBT operation on 1 March 2017. All went well with this and, at a follow up Cystoscopy on 6 June 2017 I was clear of cancer. Sadly at a further cystoscopy on 21 March 2018 a further small growth was found. A second TURBT was done on 4 April 2018 and again all OK. At my next cystoscopy on 17 July 2018 several very small tumours were found. I went in as a day patient first on 4 August 2018...
The week before my treatment went really well and I felt loads better so if you are on the same journey take heart the side effects do pass so that you are ready to start again 3 weeks later. I had my bloods done on the Monday and they were all normal. I also saw my Oncologist and he was happy for me to continue. My white blood cell count was back in the normal range for the first time since my diagnoses of CLL so the Epirubicin and Cyclophosphamide are helping to control that too. I had my treatment...
Had my staging results today, T3, N2, Mx. Tumours is extending through the Oesophagus and is very close to the heart and Aorta, and just to add to my misery, I have lesions on my thoracic spine. I have an appointment to see my surgeon on Monday 19th November, but I'm not expecting good news. I have tried the Oramorph and Oxynorm to try to relieve my back pain but nothing seems to touch it. I would give so much to be smiling and happy out walking in the fresh air once again. It's getting increasingly...
It has been such a long time since I wrote in my blog. Life is back to normal, work is so busy and stress levels are through the roof, but related to normal things, like work, family, moving house etc! Health issues have taken a back seat for a little while. Part of my mind is always back there, ready to jump if it needs to. One thing I can safely say is that I would never be frightened to be checked out; I know that can bring bad news, but it doesn’t create the problem, it just deals with it if...
Today was the appointment with the consultant just shy of 12 months (by a week or two) since I finished my chemoradiotherapy regime. Inevitably a degree of apprehension (slight), although I would not really talk that up particularly. In many respects it was a case of just getting on with it and dealing with whatever he told me.
The ultrasound scan was 10 days ago and as I had received no call to say, "Umm, can you come in a bit earlier please?" I worked on the basis that no news was good news....
I have appreciated the comments on the last post. Reassuring to know that others have similar tales.
Yesterday was chemo day and the lovely staff are always keen to check I am emptying out - to the point of adding to my obsession.
The routine is tricky. Unplug the pump, wheel it carefully way across the room to the loo carefully avoiding the randomly placed desk chairs, trollies and bins as well as trying not to rip the cannula from your arm. The worst is finding it’s already occupied. What if they...
Got my final Endoscopy today which will tell me if I have enough healthy Oesophagus left to enable my surgeon to agree to operate. I think they call it the 'Ivor Lewis' operation. It's no understatement to say that I'm terrified because I am already in a lot of pain when I try to swallow, so I've no idea how they are going to get their instruments down my throat.
I am so grateful to this site for giving me a way to release my emotions, without burdening my family.
What could be more stressful than actually undergoing treatment? The journey there that’s what. Who’d have guessed?
The actual getting there is taking it’s toll.
The hospital in reality is only 45 minutes away and we are told to allow 20 minutes from the outskirts of the city to the hospital.
I have to factor into this enough time to drink 3 cups of water half an hour before I am due for radiotherapy. If we are a little behind schedule I drink water in the car prior to arrival....
