Round 2 .....

Dad's first chemo had gone well and although he was 82 and not robust he had coped well and apart from being tired there had been no major issues. He was prepared for the second chemo and this was given three weeks after the first. He was using his home oxygen daily as advised and wasn't really feeling too bad - all things considered. Along with the chemo Dad had a round of radiotherapy, the purpose of this was to help de bulk the tumour in his vertebrae and hopefully reduce his pain. Pain was a big issue for him and he was truly suffering, I was hoping for some miracle with regard to his pain but it wasn't to be. The radiotherapy had no effect on the pain Dad was feeling. I collected Dad after his second chemo and he had tea with us before heading home to rest , he didn't want to stay with us as he felt he was putting us out - so he said , but I just think he wanted his own space and felt far more comfortable at home. Chemo number two was brutal and Dad really struggled , he became very weak and never really gained his strength back. A couple of days after Dads chemo I was struck down with a tummy bug - this meant I could not see Dad as I was not going to risk him getting any infection that could further weaken him. We spoke on the phone but I was very worried about Dad and could tell he was really struggling. Once my bug had cleared I saw Dad and was really worried about him - he was not tolerating the pain at all and could barely function. I called the palliative care nurse who visited and recommended he be admitted to either hospital or the local Sue Ryder hospice - initially Dad was against this , I think he felt that if he went in hospital he was admitting that he was struggling. I persuaded him that going in to the hospice could help him with pain management and also allow him to rest. He finally relented and was admitted for pain management and general TLC.

His overriding concern was for mum and her welfare , I visited them both as much as I could and every evening and weekend was spent travelling from Mum's care home to Dad's ward. Dad was always asking how mum was - Mum however never even seemed to notice that Dad had stopped visiting. She may well have been totally upset by the whole change in dynamic but there was no way of knowing. This is something I find hard to deal with , the inability to be able to get any insight into Mum's feelings, I constantly worry about how she feels and ultimately its a  question that will never be answered. Around this time Mum started to take an interest in magazines , she didn't read them but would spend hours flicking through them and looking at the pages, my mother in law started saving all her magazines and they were then sent on to mum, I was pleased she was doing something that may stimulate her mind and ease any boredom she was feeling. We would often while away the time flicking through magazines , pictures of babies or animals always seemed to spark and reaction from Mum - any reaction was always lovely to see.
Visiting both Mum and Dad was very difficult and I always felt like I wasn't really spending quality time with either of them , just ticking the box of visiting.  Dad seemed to be unable to remember information now as I think he was just struggling to take everything on board so I found myself becoming responsible for both Mum and Dad and ensuring their needs were met.  When Dad was feeling up to it I would take him to see Mum and he loved visiting her. He just wanted to see she was ok and being looked after.

During this time Mum was assessed by the Continuing care team ( CC)- I wasn't aware what this was and didn't pay much attention to the letter I received stating that Mum didn't qualify for CC funding , to my mind nothing had changed Mum was still contributing to her care.  I would later find out what CC was and how it could be applied to people in care. No one talks about  CC funding but everyone with a loved one who needs care should make a point of reading up on it. CC relies on people not really being aware of it- in my opinion. It can have huge implications for the person in care and their family and I will come back to this in  further blogs. My mums care is now fully funded by CC but this was far from an easy journey and I will discuss this fully when we reach that stage.
While Dad was in the hospice a CT scan was arranged to assess if the chemo had reduced the tumour size, the hospice arranged all this for Dad and also accompanied him to his hospital appointments , this in itself was amazing and reduced the pressure on me and my family hugely. I didn't have to try and juggle work around appointments but I knew Dad was accompanied and well cared for.
The CT scan showed the chemo was not reducing the tumour size and It was agreed that Dad wash't really strong enough to undergo any more treatment , this was huge blow to us all but again Dad didm't really seem to react to this. It was agreed the focus would be on pain management and getting Dad comfortable so he could regain some quality of life.