Making the most of it

Hi Kentish

just wanted to send you a hug and i hope you are managing to get some rest. I am praying things continue to go well xxx

1) letter in the post, prescription penalty notice for claiming a prescription without a valid exemption certificate. Turns out, neither the chemist nor the gp actually filled out the forms in 2017...they both assured me it would be dealt with at his diagnosis and as we've only used our local chemist who knows us well, I've never been asked for the certificate number. I have left this with the gp to sort out....absolutely not clearing up that f*****g mess.

2)Friday, phone call from the Oncology clinic to do Nigels telephone assessment for the next round of Abiraterone. We saw Nigel's specialist nurse on the Thursday before he was transferred to the hospice, she cried, upset that Nigel has been dealt such a shitty hand of pca. I did feel brave enough to say that i didnt think they had dealt with the aggressive nature very well in that they didnt act until it was another crisis. She said she would cancel his next appointment and his review which is due in a couple of weeks as it was obvious he wouldn't be attending. She clearly didn't manage to remember to do it and I'm sorry to say that the nurse on the end of the phone bore my anger and despair at the incompetence of the specialist nurse.

Just 2 more things that make a crap situation harder.

Dear, darling Kentish,

I am sending all of you the biggest hug. I think you and your husband are amazing. You give me support like you wouldn’t believe. I only hope that I will be as brave as you when...

I still can’t bring myself to log information about my bloke’s test results on here. Everyone else has questions about treatment and prognosis. Whereas I’m petrified to  find out. His PSA was >6000 last June at diagnosis. That’s the first time I’ve ’revealed’ that! I bury my head in the sand and carry on regardless. Like you and your husband, we chat and laugh a lot. Cry a bit too. We write letters to each other and spend as much time as we can together. 

We too have talked about end of life and where Laurence will be. Our lad is 14 and so we too have decided that our home isn’t right for us and that it would be so hard for our son. He doesn’t know that his Dad’s cancer is stage 4. I am trying to pull the rug out from under him as gently as I can.  Laurence has had a bed in the living room since coming home from hospital in June but a hospice will hopefully  offer better care. 

Gosh, I’ve rambled on! Sorry. Insomnia is a bugger. This is my time to be alone. To be angry, distraught and howl to the moon. Sorry if I’ve been insensitive. I have had a single shot of brandy in a coffee and it has gone straight to my emotions! 

I send remarkable you, your warrior husband and  precious children, love and peace ❣️

Vicky xx 

Thank you Kita, 

I had a chat with the hospice social worker this week and something she said stuck in my mind about how I am coping with the situation :

"You are doing at the moment and there will be time for being later."

She is quite right, there are times I cry so hard I can't breathe but most of the time I just work my way through the day as best I can in the knowledge that one day it will be different and I will have to fully embrace the pain in order to move forward with it.

Vicky, having youngish children makes it different, as a parent, you want to protect them from the nasty side of life. I've tried to remember how sad I felt at 29 to lose my dad so suddenly and to work out what would have made it easier to cope with. For me and the children that is being informed, there is a brilliant booklet from Macmillan about talking to teenagers and children and it also deals with when a parent is terminal. I've read it over and over and feel I am prepared to have the conversations when they arise.

When Nigel was admitted to hospital at the beginning of December for the low sodium, I sat the children down and began with. "There is never a good time to have this conversation so we are just going to have it now." I then told them that any infection dad had could be the one that he wouldn't be able to get over or that the hospital wouldn't be able to control one of the many things that were  failing and that it would be this that would cause dad to die. We sat and hugged/cried for a while and then my daughter turned the TV on, my son resumed browsing instagram and I went and washed up.

I don't ask them to "be brave/strong" or anything like that, nothing is forced, if they are sad they can be sad. Letting them have their space to process is important but then we carry on with normal stuff..."tidy your room, wash the dishes, bring the cups down!"

I can only hope I am getting it right and only time will tell. Everyone is different, it's good to ask for support even if that's out of your comfort zone as it may help you find a path through this.

Devon maid,  

I read your posts and really felt for you, the hospice have been great in making Nigel comfortable and in answering questions about how this horrible disease progresses at end of life.

Keeping on top of imagination is a struggle, the smallest thing can be blown totally out of proportion. I have reached the acceptance stage of grief, but little dribbles of denial and hope still creep in, I think that's inevitable. Nigel thought he might come home for an hour in a wheelchair cab today but after having a wash he is fast asleep again and unlikely to manage it. One the one hand this feels like improvement but on the other I can see it takes enormous effort for him to do anything and this is not improvement. 

Stau and Peggles,  thank you for the support. Your kind words are much appreciated.xx

Yes Chris, having youngish children certainly puts  a different perspective on life and cancer, it feels so wrong that they are losing their dad already and that they'll not have him there for all those "important" milestones. It has certainly lent a frantic feeling to approaching each treatment, really desperately hoping that this one will last. I hope we've disguised the desperation from the children and instead given off an air of "living life" regardless of pca. I admire your attitude and determination and I understand your reluctance to embark on what can sometimes seem a futile journey. I have everything crossed for you that each and every treatment will knock your pca back as it should. Big hugs and love to your family. Xx

Ha Lynn! Those pesky bins, my mum has been getting the Boy to empty them and then carry them down to her house (just along the road) and then she puts them out with hers in the morning!

Whatever works eh?

I was just going to post a midday update as we've had a family meeting. Bloods have been taken and the consensus is that if he is medically stable, i. e sodium etc are not in the danger zones, then we are planning his return home! I can barely contain my excitement....I know he's still really poorly but it's like we've had a reprieve and that perhaps now it may be a more steady slope than the Base jumping we've been doing.

Occupational therapists have been making  lists for me of measurements required and are going to try and get his legs moving again.

We talked about if he is not stable and agreed that the hospice is a good place to stay and we will just carry on as we are. I have popped home for an hour to do the washing and read the post etc.

Our hospice is 75% NHS and 25%charitable donations. According to their website they need to raise 600000 a year to sustain it. The staff are all for family pitching in to help with washing and personal care, and I can go and make a cup of tea/cofree etc when I like and bring it around to him. There is also a microwave and toaster and fridge, which makes it easy to take our own food in and reheat.

But today he has eaten my porridge, 2 biscuits and their sausage and mash followed  by ginger cake and custard. Plus 3 cups of coffee.  His appetite, taste buds and sense of smell appear to be returning, a bit of me hopes that if they restart the Abiraterone it doesn't mean they disappear again. 

He's having a nap now and the kids are coming up for dinner, I think we're back to "making the most of it"