Well what a difference a week makes!
Harry has been to school Monday and Tuesday afternoon this week. Last week I wasn't sure if harry would wear his uniform again! We stayed at Martin house till Friday.
Harry was so spaced out last Wednesday, he could hardly focus his eyes, but was determined to be busy and had me up at 6.30am to do lego with him! He was so busy all morning that by lunchtime he was exhausted, but he was so reluctant to give in to sleep! I had to lie next to him in bed and hold his hand and give him permission to sleep in the end, and he slept for several hours!
As said in my previous blogg the doctors at Martin House were able to play around with his medication. He was taken off morphine as it wasn't agreeing with him and swapped to oxynorm another opiate! The morphine had to work its way out of his system for him to become more alert!
Last week was so very hard. The doctor at Martin House included us in all discussions around his medicines and also told us that although hard to predict and gauge these things, in their experience it seemed that the disease was spreading fast throughout Harry's body and timescales looked like weeks rather than months left. The way Harry was last week I had come to that conclusion myself and wasn't even sure if Harry would come out of the hospice. I could accept that, as he had very little quality of life last week and to see him, in pain and agitated isn't how you want to remember your son. Therefore last week I was prepared to lose him sooner rather than later, to minimise the pain for him. With this acceptance, goes hand in hand the acceptance that trips out will end. So much emotion I can tell you!
I was listening to Jeremy Vine's show this week, which had a section on end of life care and I could totally identify with it.
In March this year, we were told that although hard to predict Harry's life expectancy, he probable had just months left, based on how prevalent and aggressive he has had the disease. Therefore based on this info, Paul goes on sick at work and I decide not to go back to work as planned in May this year. We concentrate on creating our memory box and giving our boys the best time ever! We have certainly achieved that! However, you can't keep living each day as if its Harry's last, as there is only so much energy and also the day to day stuff at home gets missed. Getting Harry to school has been a goal of ours too.
Therefore, as Harry is well for a week or 2, we slow down and do more mundane things. However, Harry then needed morphine to help with the pain, so we decide to flit to Filey, which was the best decision ever, as we had a fab week. Since then, Harry has needed his pain relief increasing at an astronomical rate, leaving us thinking the very end is in sight!
This week, dare I say Harry seems to have plateaued again. From his blood test last Friday it does not seem that the disease has spread into his bone marrow yet as thought. His x ray did show up further hotspots of cancer in his legs and pelvis and this will have caused him further pain. A radiographer looked at this x ray yesterday and felt one zap of radiotherapy would help his pain. As a result we have visited Jimmy's in Leeds today and Harry had a CT scan and tomorrow he will have one zap of radiotherapy. This may, or may not help, but in the consultant's experience
Radiotherapy can help with pain management particularly when cancer is in the bones.
Harry is not keen on having radiotherapy, he said earlier in the week, that he doesn't think his legs will get better, I never want to lie to Harry and so I agreed with him. We had a chat about how this made him feel bad and how sad I was, then he got on with playing.
Having had this conversation I am not going to lie and say that radiotherapy is going to cure him, but said it could make him better long enough for him to enjoy more days out. He still didn't think it was worth pursuing, so I asked him, if he had a dog that had poorly legs and the vet said that if he gave the dog some medicine to make them better, even if just for a while, would he agree to the vet giving the medicine? Harry thought the dog should have the medicine, so I said, that mummy has consented to him having medicine to try and zap some cancer cells and help some pain go away. We had a cuddle, then Callum and Harry resumed normal play, dancing around the kitchen, creating chaos, whilst I cook tea! Brought a smile to my teary face!
End of life care is such a strange thing. We go from accepting harry will die more imminently last week, to seeing Harry's determination shine through this week; his medicines were tweaked again at the weekend, obviously creating a good cocktail for Harry! Harry's smile can be seen again and we can hear his laughter!
This is going to sound exceedingly selfish, but in many ways I don't want Harry to live for months. The emotional rollercoaster is exhausting; financially I don't know how we will manage if he lives say beyond Christmas. In some ways I thought if he dies in the next few weeks, then the hospice is quiet. Come the school holidays it is booked up with respite stays and it'll be busy! If Harry dies in the next couple of months, then we can afford to have a couple of months off work the other side to grieve Harry and try and get to grips with the events since Harry was diagnosed in November 2011.
I will be forever the planner! Though I am so very much trying to take each day as it comes, which I manage mostly, but when faced with death I guess I try and put a positive on even the most grimmest of events, ie when it is convenient to happen and the benefits of Harry dying sooner rather than later.
The thing with death, there is literally no predictability to it. When i was pregnant with harry, he arrived 2 weeks early, a lovely surprise! Callum arrived 10 days late and i found not knowing which day he would arrive hard,as I like to be in control, but i did know that come day 14 i would be induced. In out situation now, Harry could last weeks or months, it depends on how quickly and where the disease spreads to. However, Whilst Harry has a smile this week and has quality to his life again, I hope this never ends. Our finances will sort themselves out! If we can squeeze a bit more fun in and keep harry pain free, then that is what matters the most!