So folks I have now been home for 2 weeks, and a routine has become second nature. My daily routine has been 3 nebulisers, 2 tube changes, 5 feeds through my nose and 12 meds, the major issue has been raging diarrhoea for 5 weeks and rapid muscle and fat loss.
My family have been fantastic, despite my occasional frustrated outbursts, in hospital nobody knew I had a voice, but at home I had never been without. Not being able to eat and drink has been hard the swollen face was so unexpected and the last two weeks of no food had been frustrating, as well as the lack of exercise through being too weak.
We also found out a few facts and figures, the chances of cancer returning after radiotherapy is 2%, and the chances of a leak following laryngectomy and neck dissection is 1%, I think this makes me pretty outstanding 😂
Anyway the day of my swallow test came round, despite saying otherwise I had built up my hope’s up, our trip to Cornwall depended on it in my head. My swallow test was being done in Kidderminster hospital followed by meeting my specialists in Worcester – I have to say the liquid you have to swallow is hideous and tastes nothing like orange.
By 10.30 we returned to Worcester for the results, this took a bit of time due to images, reports and doctors in theatre – eventually results were in. Everything looked ok BUT, there was a small sump where the leak had been so it was decided a liquid/one texture diet should be followed so any small bits of food would not collect in the sump. Disappointed does not sum up my initial reaction no cornish pasties, cream teas for the second holiday in a row. The previous year my throat so sore from first bout of cancer I was on liquids – but I am alive small sacrifices initially so what if its liquids we are going to be going to paradise😁
My first treat after getting my news, was my first cappuccino in 6 weeks and did it taste good, and my first meal was tomato soup. Since then I have had the following blended, scrambled egg and beans(see below), sausage and beans, lasagne, cottage pie and a multitude of soups.
The hardest part of the whole cancer experience has been the knowledge that I can’t eat my favourite holiday foods, or do one of my favourite hobbies body boarding in the wonderful cornish sea. This is compounded by not being able to exercise fully, I have on occasions been a complete pain in the arse to my family, for this I apologise and continue to work on my head and how to best deal with it all.
Thanks as ever for reading I hope you find it a little bit interesting.