Sunday, 26 January 2014

January Bits and Pieces!

This has been a busy week with all sorts of bits and pieces going on, wedding planning being one of the main activities amongst them!

Firstly, it was back to reality and a visit to the GP to finalise which drugs my surgery will prescribe and which they won't and to also update the doctor on my changes in medication. My surgery is only able to prescribe the 'cheap' drugs and not the more expensive ones. These will come from Papworth. It is all a bit of a rigmorole, as at the end of the day it will be the same Primary Care Trust that will pay for them anyway. 

It seems to be a big lottery over drugs and who will pay for them: I've met other transplant patients whose doctors are willing to prescribe all the drugs and then others like me, who have been refused the expensive ones. According to the newspapers it seems to be a similar situation when it comes to cancer drugs and there are even reports of drugs being refused because they are seen as too expensive, although they have been approved by Nice. At least I am going to get my drugs one way or another, so I can't complain, but it seems wrong to me that there isn't just one straight forward system for all. 

We celebrated an early 'Burn's night' on Tuesday evening with haggis, tatties and neeps - we always celebrate 'Burn's night' - Rob was born in England, but his late parents were Scottish, so we like to carry on traditions! It's a quick and tasty meal, proper winter comfort food! And all washed down with a wee dram of whisky if you fancy one! 

We were recently interviewed for an article that is going to be featured in Hertfordshire Life, the article is going to be about living in Knebworth, but they had seen our transplant story in the local news and wanted to include it too, together with our views on living in Knebworth. We are always happy to try and spread the word about organ donation, so on Wednesday a photographer visited to get some pictures to go with the article. We are beginning to get used to this!  The feature will be in the March issue, which will be on sale in February. 

We have been exploring a few wedding venues this week too, for Sarah and Oli's wedding, just shopping around really to see what there is available and when and getting an idea of costs. This is all very exciting for me, and even more special in the light of my transplant. They hope to get married in spring next year and now I've had my transplant, I'm looking forward to enjoying every minute of it -  planning, preparations and all! It's a good excuse to get out and about and have a few afternoon teas - as Oli said on Saturday, after seeing a venue that didn't quite meet our needs, 'Well at least we've had a good afternoon together and enjoyed a nice afternoon tea!' It's going to be a lot of fun: I'm going to make sure of that! 

Just when we had thought we had finished with media interviews for the time being, on Friday I was asked to do another interview with the British Heart Foundation for their magazine. I was more than pleased to help with this, as it was about living with Idiopathic Pulmonary Arterial Hypertension and the importance of Professor Morrell's work and research on genetics, which aims to help develop new treatments for Pulmonary Hypertension. Hopefully the article will help raise awareness of Pulmonary Hypertension. His team were awarded a two million grant last year for this important research, which we are all hoping will lead to some targeted new therapies for PH and even a cure. 

We are still catching up with friends we haven't seen since my transplant and spent a lovely day on Saturday when friends came from Lichfield, near Birmingham to visit us. It all felt a bit surreal at times, as last time we met up was just before my transplant and now I've recovered a lot from the operation it was a bit like I had just blinked and it had never really happened! At other times I noticed how much more energy I had and how I can concentrate on conversation for longer. We are slowly managing to meet up again with many of our friends since I had my transplant and seem to have a busy calendar over the next month or so. 

After a lovely weekend, just as things feel like they are getting back to some normality after my transplant and Christmas, it's time to start packing a case ready for my next hospital visit - transplant clinic and yet another brochoscopy are looming again. Hospital always brings it home to me, the seriousness of all that has happened and reminds me that there is always some uncertainty about the future. I always begin to get worried about what they might find and why they need to keep checking my lungs over and over again. On the other hand it is always a relief to be going back as there is always something niggling - this time my never-ending cough feels worse this last few days - so it will be reassuring to be checked. It's always a massive relief to get home again and be reassured that all is going well. So I'm bracing myself ready and hoping I'll be home again fairly quickly again. 

My late father once gave me a lovely silver cross and disc engraved with a prayer called, 'The Soldier's Doxology', which had belonged to my grandfather. My grandfather wore this during the Battle of the Somme and survived it. I always keep it with my transplant bag and bring it to the hospital every time I stay in or visit. It is my lucky charm, I reckon if it worked for my grandad, then it could work for me! So far, so good, it will be coming with me yet again! 

Today I'm also sending off my first writing assignment for the writing course I've just enrolled on. I've decided it's time for some new challenges and activities now I'm getting my life back again and writing is something I can do from home and can also manage even if I feel a bit under the weather so it is a perfect choice for me. It feels good to get started on a new challenge and I am mainly doing it just for my own pleasure, but who knows where it may lead ... we will see! 

So a busy week with lots of bits and pieces going on - life seems to be getting busier and busier now, which is good news, because busier and busier means getting better and better! 

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