D I Y CANCER.

Hi gang 

Well. Annette’s long post is still MIA but I’m going to press ahead and try to reply to you all. 

I find it hard to put into words my gratitude for your collective kindness and humour as I face this next hurdle. I am truly humbled too. I think this group has its own spirit. We bring out the best in each other, me included. To find such kindness in a random group of strangers online, I ask myself is this luck? As I face a wider world that often seems harsh and unyielding it makes me wonder if the kindness is there too, just a bit hidden, and I look for it. More often than not I find it. 

I’ve gone off on one. Back to the moment. 

Yesterday afternoon was tough. It was about 3pm before I saw sight of a doctor and I was giving up hope. 

First the palliative care consultant arrived. We talked about where we’d got to on the pain management. Progress seemed halted. The TENS machine was helpful as were fentanyl tablets I can dissolve under my tongue for rapid short lived relief to allow me, for example, to take a shower. We agreed I didn’t need to be in hospital for pain management and she would investigate handing over to the hospice. 

Then the duty consultant oncologist arrived with her two juniors. One standing at a computer on a trolley, the other by the bed. I outlined my understanding of the scans, explained that in my view it’s not doing enough to be worth continuing and at any rate I couldn’t envisage attending a chemo session in this pain. I told her I wanted to abandon the chemo, that I understood this took me from treatable but not curable and into palliative and end of life care. What I needed from her was an understanding of the scenarios that might play out from here. I understood she couldn’t tell me what would happen to me. Then I drew breath. 

Her junior at the computer said “that was easy. You did all the talking”. Was this not normal, I asked. No, said the consultant. She normally had to draw people reluctantly to the conclusions I had already reached. She agreed with my analysis, said she wanted to consult with my oncologist and would come bsck to me tomorrow to discuss scenarios. In the meantime she would start the discharge planning so I can get home.

tbc..don’t want to lose this 

 Part 2

Then the palliative care consultant came back. She had talked to the hospice pain management consultant and I could be managed by them. There’s a waiting list for an inpatient admission but right now I’m not sure that’s what I want. 

She had also finally spoken to the pain management consultant at the hospital. He had reviewed my scans and said he could not perform a nerve block. The tumour is growing round the nerves coming out of my spine, which explains the pain. But it also made it technically impossible to inject anything with either safety or efficacy. This was disappointing as I felt a nerve block was really my last hope for some good pain relief. 

We had a longer chat about how I will manage at home, my support networks, planning for the girls’ future, leaving a legacy and so on. She asked me where I get my strength and said it had been a pleasure to be involved in my care even if it was for a short period. It was quite touching. 

So now it’s the wee small hours. I’ll go home tomorrow with enough pain killers to fell a large elephant. My younger daughter has been there today (yesterday?) changing the beds and generally being a hero. I put her to work - felt like a good move in the circumstances. Better than feeling at a loss. 

I have so many questions about how I’m going to manage. tvmananndanv and @anndanv you have been so very helpful. It’s going to be about using a combination of painkillers, disability and mobility aids, meditation and head management. I think I need a Mrs tvman or a Vince. I can’t rely on my daughter in the same way I would a spouse and this all highlights just how badly my ex has behaved. That he left his children to cope with this. My older daughter is unfortunately not able to be around as she is struggling with serious mental health problems. 

I can’t say I’m not terrified. I am. I think my friends and family will rally round. I must let them. There’s a big part of me that wants to get on a plane to Switzerland tomorrow. An equal part knows that’s not the way forward. 

I hope I have not scared anyone. I’m sure I’ve over shared but hey, you can choose whether or not to read this. 

Thank you again for all your support. The list is too long - I’ll break the system if I at mention you all. Georgieporgie, ownedbystaffies, gobaith, norberry, tamencio, plastic, pet1968, Devon Cat..,and anyone I’ve missed out. Your words mean so much and help so much.

And , I am so sorry my story has hijacked your thread. How are you now? 

xxx

Hi @daloni (I've tried 5 times and the flaming thing won't highlight your name, just says "loading") I

Sounds like you have made a very, very brave decision. Of course I support you in that, I know, not think, you are a lady who stands well above the parapet and it's an honour to know you.

I'm trying to find words whilst I'm in a daze. I hope you are at home now with sufficient painkillers to allow you to do the simplest of tasks without pain. Are the girls with you? I hope they can understand.

It's early and I'm sure you know why I'm awake, I'm going out to try to sleep now, Sevredol taken. 

Take care Daloni

Tvman xx

Hi (it worked. Weird)

I have been writing my last post just as you were writing your last post, psrt 2 of 2, so it'll explain why some parts may look like I didn't read part 2 of 2. I hadn't!

I hope you're sleeping now.

Tvman xx

Hi tvman

The trick is to wait for the name to load then press return.  

I am still in hospital but I will be home tomorrow. My small girl is there. Big girl sadly can’t be. She has serious mental health issues and being at home was exacerbating them. It is very, very sad. I can’t look after her at her time of need and she can’t look after me. 

xx

Hi Annette anndanv

Oh my dear friend Annette, I am so glad you have a scooter now, it sounds EXACTLY like mine, it also splits into 5 pieces-how weird is that?

I've now read 2 posts that have shaken me to my defective bone marrow-yours and Daloni's. 

Other parts of your post I'm going to reread tomorrow, sorry today! It's almost 5am now, I'm tired and I'll try to get to sleep now. I'm going to send you a pm first though, I'm putting that here in case you don't get a notification.

Speak later Annette

Tvman xx

Hi Daloni it worked?

Your name just wouldn't load, if I could get again it's probably still saying "loading" I usually tap on your username when it loads. But it didn't load!

Tvman xx

Oh

Poor Big Girl. Just exactly the kick in the teeth you didn't want.

Tvman xx

Hi How are you today? I hope you see you are not alone here!

You are so brave and strong and have helped me and others when we have been having a bad time 

thank you so much for being here to help us 

lots of love