We Talk Brain Tumours

Thank you ladies, Ann, Debs and Joanna.

Newark hospital has recently changed to more of a minor injuries unit. Anything thing more serious is shipped off to Mansfield or Lincoln.  There is no way now that Doreen could be moved from out of the house and certainly not for a journey. She is likely to break bones very easily duw to her osteoporosis and there is no way she could undergo any treatment of note. This is the opinion of the Doctors and I do agree with them. The trauma would now be far too much.  The DN's responsibilities have have changed somwhat over the past 12 months or so. Their priorities are with chronically ill patients, I believe this is to prevent bed blocking. Unfortunately for us we don't fall into the definition of chronic!! We haven't attended the City for almost 2 years now (Dr Sokal and Mr Byrne) and when I rang a few weeks ago for help, I was told we weren't "Active" on their patients list!

If it wasn't for our lady GP I really don't know what we'd do. She will always ring me back and pop in if I ask.  The continence nurse is good and will also visit if I ask. The Mac nurse rings every 6 weeks or so and again would come if requested. I believe she has now developed a chest infection which really worries me, and today we have started a course of Amoxicillin.

As I have said before and I have no reason to change my opinion. It does not pay to exceed your sell by date!.. They then seem to brush you aside to make room for 'new stock'

Thank you again for your responses, I really don't know where we'd be with The MacMillan Express! Love and best wishes to you all.  Martyn XXXX

Hi Pete,

Sorry I posted before I saw yours. Our OT? we should be so lucky!  Newark wouldn't come to us, but ateam from Mansfield attended about 15 months ago, and made 5 or 6 visits. They got us the wheelchair and hoist, but when Doreen had no response they had to move on. I taught myself, or so I thought, to use it single handed which is apparently against H&E.  Therefore no OT's I'm afraid. Best wishes to you both.  Martyn

Oh Martyn, you and Doreen are having a rough time of it.

You're only human Martyn and unintentional mistakes happen. Please don't feel guilty, you're doing the absolute best you can and Doreen will be aware of that. I hope she isn't developing a chest infection and she feels better soon.

Naomi.x

Firstly, I would like to thank you all for the support you have given me on here. It has been a horrendous couple of days but finally I am calmer and ready for what lies ahead.

Dad is going downhill so rapidly I almost cannot believe it. I saw him today and even since Monday he has worsened. The OT and DN are coming tomorrow to try and sort out his constipation and also see what is needed in the house until he goes in to the Hospice. My mum had minor surgery today to remove a calcified haematoma from her forehead that was attached to her skull. As routine they are sending in to the path lab but as she has had it for 20+ years we are hopeful it is nothing. However, she now can't bend down for four days so dad may be admitted to our local oncology ward to give mum respite. Mum is adamant she doesn't want that though.

Pete - you are right. I know what we are dealing with now and there is a degree of relief to my grieving. Dad has not had any quality of life for about the last six weeks and a poor quality of life for the last year prior to that. He cannot speak, communicate, walk, toilet himself, eat without choking or even enjoy a beer (his one big pleasure in life). He is done and I love him enough to respect that and let him go.

My wish now is that this next part of his journey is speedy and he is soon released from the shell that his body has become.  I have said everything I wanted to say to him when he was still able to understand. He knows that I will look after mum and not let her be lonely. His financial affairs are in order and he is not leaving behind any unfinished business. He knows he is loved and I hope this comforts him.

It's time for him to take back some control and do things his way for the first time in nearly a year. He refuses to take all of his steroids (clenches his lips) and we and his medical team are respecting his choice.

Love to all.

Naomi.x

Martyn, it's awful that you don't have the help and backup that you so clearly need.  Are Macmillan/Sue Ryder helping you at all?  And yes, I'm sure many of us are working rigorously against H&S regulations and along the way we all have our mistakes and minor victories.  The great thing is that we share all of our ups and downs here and tend to learn from other's experiences.

Naomi.  So sorry that you seem to be slowing down and coming to the end of your father's journey.  It sounds as though he knows and accepts it as well.  I know that Macmillan have a booklet that help with the end stages and your Mac nurse will also be supporting you.  On top of this, it's probably very worthwhile to ask about some counselling which will help you to come to terms with what's going on (and help you to support your mother through this as well).

I most sincerely wish you, your father, your mother, and your family comfort and peacefulness in the coming days.

Thank you Pete. I hadn't thought about counselling. Naiively I thought I'd be able to cope but the closer I get to it the less likely that seems. The support on here helps a lot and I still hope to get mum to join after dad has gone as no-one understands better than someone in the same situation. I just want him to go quickly as he wishes but seeing as luck on his side throughout, I'm not holding my breath.

It couldn't be happening at a worse time - my nephew in NZ is taking the equivalent of A-Levels, my son has GCSE modules in Sept, my daughter starts secondary school and my baby is due to have his surgery in Sept/Oct which will take me away to a different county for a few days .... Always the way, hey.

Keep going everyone.

Naomi.x

That was meant to say "seeing as he hasn't had luck on his side throughout". My fingers can't keep up with my mind.

To top it all, I've been diagnosed with a very overactive thyroid gland and my GP wants me to start on betablockers to slow me down as I have bad tremors and my heart is racing but I am still breastfeeding my baby until after his surgery so those will have to wait. Anyway, on my list of priorities my thyroid gland comes a long way down!

Evening all

Martyn.....I know you dont want to hear this but you are an inspiration to us all and it beggars belief that you are having to cope with this without the support that the rest of us take for granted. My heart lurched when I heard how you tried to keep Doreen from "going down" Everyone on here will empathise with that feeling of hoplessness and "Oh God please stay up , dont fall onto the floor". I can remember sweat pouring from me as I tried to keep Mark up in similar circumstances, because I knew from experience that once down there was no getting back. You need to ask for a Community alarm and get social work in and say that you just cant do it alone. Even the Carers that I had, said that it took at least 2 to tackle the hoist...although I had been doing it alone.

If you become ill Martyn......they would have to put help in place. You have not harmed Doreen. You have loved and cared for her and she knows that too.

Love

cathi x 

Dear Martyn,

What would Doreen say to you if she could?  Silly sod, thanks for trying darling, I know you didn't mean for me to fall?

All or one of the above, your love and care for Doreen is clear for everyone to see, she is so lucky to have you (when all other care systems around her fail, you are there).

I know you feel awful and so would any of us but you did your best even when things went wrong and it wasn't long before Doreen was safely back in bed.  Don't let it put you off trying to let her experience different things while she still can. 

As Cathi said YOU ARE AN INSPIRATION TO US......don't forget that when times are dark

Waving hello and sending love & strength to all who want or need it.

Martyn, you know, if she could talk, she'd probably call you a 'plonker'!!  (You know I love you really!   - Yes, you do!!)  As everyone else has said - accidents happen & you were caring for her in the best way that you always do.  I just don't understand how the system can abandon you like they have - you need to rant and scream a bit louder (but I know how independent you like to be)

Take care all

xxxxxxxx