Wednesday, 16 October 2013

16 th October

Well we decided to live and it felt great. We began to make plans for half term and think about Callum's birthday and yes, Christmas, then it's like a record being scratched! 
Harry was doing most splendidly on his new patch, we had the old Harry back. So alert, his memory was brill and his ability to concentrate awesome! He improved vastly as a consequence with his reading, woke up around 8-9 am, in school earlier etc. the smell of hope and an even keel was immensely delicious! 
Then last Thursday Harry awoke with pain in his leg. It was this Date exactly 2 years ago that Harry awoke with pain in his leg and signified the beginning of this turbulent rollercoaster that is cancer. Harry went to school and managed ok and was fine after school too, enjoying showing his hamster Joey off to a friend. However, at bedtime Harry was in tears with pain in his leg. I had to commence oral morphine to help with the pain.  Intermittent pain is how it always begins and our hearts are in our mouths again. Harry slept in Friday, he awoke with pain, he was limping and a different sole to the one witnessed only hours previously. I gave him more breakthrough pain relief and he went to school. We went to ikea to try and look at beds for the boys rooms, but I couldn't stop thinking about Harry. I contacted our McMillan nurse and we decided if pain persisted over the weekend we would increase his patch. I also felt the scan was more urgent to give a good picture of what was going on and whether any more radiotherapy is viable.
Our McMillan nurse as ever, made several phone calls on our behalf and we have a scan booked for tomorrow (17th oct).
When I collected Harry from school on Friday, he had been given a certificate in assembly as he was the star of the week for being kind to others and sensible! I asked Harry how he was at pick up and he said he had been in pain all day, but despite the pain he had, had a happy day! He makes my heart melt!
I gave him more oral morphine to help with the pain and decided to see how he was on Saturday. Cycling club has moved to Saturday mornings as its getting dark much earlier on an evening now. I wasn't sure if Harry would be up to going, but he was so very determined to go despite limping and he himself said that it didn't matter if he left early!
The session was 90 mins. At half time Harry showed no signs of giving up! However, 10 mins before the end he was exhausted and tearful. Some of the other parents commented that they never saw him fall to initiate him crying. It's times like this when I want to shout that he has cancer in his bones, so he doesn't need to fall to be in pain. Harry had actually done amazingly well and had been competing in a race, whereby his team was second!
Once home, Harry was very tired and limping, so I leave instructions for Paul to increase his patch. Since the patch takes 12 hours to kick in, I gave him oral morphine to help ease the pain in the meantime. 
I usually undertake all medical procedures, but I had a date with Jason Donovon, whom was starring in 'Priscilla Queen of the Desert'. It was a fabulous production and the music had us dancing in our seats! One track was 'Raining men' by the weather girls and it took me back to my previous night out with some year 1 mums, where I did a cracking rendition of the same track myself in 'The Rose and Crown!' Though in all honesty having had a few too many to drink it was probably 'arse about tit' if you excuse the expression! 
Despite turbulent times again I had a really great Saturday, finishing with a great Mexican meal in the new Trinity Shopping centre in Leeds. We had a tapas, a couple of glasses of vino and added to that was great company, just what the doctor ordered! 
Harry awoke Sunday with much less pain, the increased patch was working! Yey! However, we are only too aware that those pesky cells are present. Yet, again we feel uneasy.
However, we go to church and the boys enjoy seeing their friends. Harry manages to ride his bike well around The Tarn in the afternoon before joining The Barracloughs for a Sunday Roast. 
A great sociable weekend! 
Harry is doing well on the higher strength patch, but we can see his concentration is affected and so is his memory. It is a trade off. 
I am only too aware how things developed 2 years ago and again in May. Harry started with pain at the end of May, we then had a fantastic week in June, then things declined rapidly and only improved once Harry had, had a blast of radiotherapy. Therefore, having tried to live and not think of death, it's very, very hard again. 
Harry has such huge determination and lust for life. His time on this planet is not over yet. The longer he lives the more people he meets and the more people there will be to feel the loss. Sometimes I wonder if Harry's life is to try and spread awareness of cancer. It should not be a taboo subject, in fact I think it is a disease that we will all be affected by in some way during our lives, considering 1 out of every 3 adults will have cancer.  I would hate to think any child following harry's death thinks cancer always means death, because it doesn't. 3 of my family members have had cancer and beat it! Cancer can be beaten, unfortunately in some cases like Harry's it can't. 
Well, we were in LGI today for Harry to have his lines in his portocath flushed, he had bloods taken and nuclear dye syringed into him to make the cancer cells glow in readiness for tomorrow's big MIBG scan. Harry has to take iodine twice a day for 3 days. It's the first time he's had to take the medicine without an NG tube. It's disgusting and made me retch when I tasted a tiny bit! We mix it with yoghurt and Harry has lots of juice between spoonfalls. The purpose of iodine is to protect his thyroid. In some ways it feels what's the point he is already on a palliative pathway. But if we can keep problems to a minimum then of course we will do our best. Harry is a star, he always will be, the brightest shining one with a cheeky sparkle! 

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