Sorry that it's been so long since my last blog. Not been too well over the last few weeks but now back at just about 100%.
As a reminder to all my loyal readers T and I got married on Easter Saturday with me rattling about with a huge cocktail of drugs to get me through the day. The tablets combined with the joy of the day seemed to work and fun was had by all and we went off on honeymoon with me not feeling too bad.
However I wasn't well and the symptoms were not that nice. In simple terms I was spending every day not wanting to eat and retching without much reason. Not a good way to enjoy a holiday! But the break was good and much needed. And it was half way through the holiday that I got to hear the results of the blood tests and xrays taken on the day before the wedding. "Not good but not so bad you need to cancel your honeymoon."
And it was with these thoughts in my head that I settled down to enjoy he rest of the break knowing that they wanted to repeat all the tests as soon as I got back home. So it was another trip to my doctor for the repeat process.
But it was whilst waiting for the results that T was having a chat with her boss at work when he made a link between my symptoms and his own. His suggestion was that I might have a hiatus hernia. A quick look at the old internet and he was right with the symptoms matching my own. And this linked with the fact that they had found a small hiatus hernia at my last endoscope exam.
So it was back to my doctor to get the blood and xray results and a chance to talk through my self diagnosis. "You could be right" doctor Tom says. The result was a change in drugs and fingers crossed. Bloods had been better and the xrays clear but some concern about my kidneys so an ultrasound scan was to be booked.
I was ready to try anything and everything. Feeling pooh for about 6 weeks is not my idea of fun and I was getting more and more fed up. In fact I was pretty down by this point and felt that I was perhaps going to feel like crap for ever more. :-(
But then slowly I started to feel a bit better. And I am happy to say that I have now been able to eat as normal for about a week now. Me happy :-)
And then last Wednesday I have to go in for my 9 month after the operation scan. Took ages this time due to emergency use of the scanner. Just a couple of days later I see my consultant last Friday. We walk into his room and we go through the normal greetings and he gives a throw away comment "oh the scan is clear by the way - next one in 6 months this time".
T and I do high fives in his consulting room and big smiles appear on our faces. :-)
And folks I have to tell you that not having to have a scan for six months is the best news for a long long time. With scans every three months it is a continuous round of worry as the time shoots by between the scans. Six months feels a lot more that twice the length of three months. Crazy but that's how my brain works at the moment.
But now some different news.
In conjunction with my consultant and the whole department medical team we are soon to launch a new charity to provide support to sufferers of bladder cancer. Bladder Cancer Support UK is currently being registered and has already started to raise funds for it's launch. Last week we managed to raise the first funds for the new charity and new events are being planned to carry on with the project.
The organisation will be national with a fully interactive website with many features similar to those we all use here on the Macmillan site. We are currently getting quotes for the work to set up the site and I will let you know when it is planned to go live. As well as this national support facility we are also setting up a local support group with regular local meeting to give the needed support and even hugs. This will start with a coverage from our two main local hospitals and we are just about to make contact with all the patients and carers who have been knocked sideways by a bladder cancer diagnosis.
Once we have got the model right we will then support the formation of other local groups throughout the UK.
So if you want to help build this new support organisation for bladder cancer patients and the families and friends please do get in touch. I know that Macmillan has helped us over the last year and we want to spread that help with a detailed focus on bladder cancer.
I'll keep you informed as we move forward over the next few months.
Thanks and hugs to you all
Andrew xx
