mssage for LaraC

Dear Lara, I hope you are comfortable at home. The plan is for me to leave hosp hopefully next week and although l am desperate to be home with my husband and daughter l am also very scared about leaving the support of the hosp. l am leaving with good back up but it is not quite the same. l was just wondering how you managed . Forgive me for asking but how mobile are you ?
Hope your days are happy
with much love
Jacqui xxx

Hi Jacqui,
I have been thinking of you…
I completely understand how scary it must be to leave the hospital, I had a panic attack the day I was supposed to be leaving as I was so nervous. You’re right in that you can get so used to the security in hospital even though you are desperate to get home. However, I must say that I feel much better since I got home and there was no need to worry at all. The hospital set up home care for me for an hour a day and things like a shower chair and even an alarm button around my neck in case I fall etc so I felt very secure. Do you have all that organised for you too? I have the alarm button as for some hours during the day I will be alone and this connects to an operator who in turn can contact my husband/sister/ambulance. It sounds like you have things set up at home though.

In terms of mobility, its ok in terms that I can walk but because of the brain fluid mets I get really dizzy and risk falling quite easily. I can walk outside my house to the car with assistance then any further Im in a wheelchair unfortunately as the bone mets are also causing me mobility/pain problems so pretty much house bound unless a dutiful family member feels like taking me out!

How mobile are you? Will you be alone during the day or will you have help around?

I really am thinking of you and I promise the thought of going home is much scarier than the reality. It was a little emotional when walking through the door as it’s a big change but once you get into some sort of routine you will feel much brighter for being around your family and own surroundings and you’re only a phone call away from the hospital.

Take good care and feel free to ask anything
Love Lara xx

Thanks Lara it is reassuring to know that you felt nervous too about leaving hospital. l cannot walk at all although l can manage with a frame to transfer from bed to wheelchair. lf all goes to plan they will discharge me next week and l will have a carer 4 times a day plus support from my family. However l want to try to be as independent as possible and if l am in a wheelchair don’t believe l need someone sitting over me. l am hopeful that the wheelchair should fit through all the door ways giving me full access downstairs.
Funny enough the lady in the next bed works for the response team for the buzzer system albeit a different council so that is something my husband is trying to sort out.
On the practical side l need to be home to see how things work out.
Thanks for your support Lara it means a lot as only people who are going through something similar truly understand the emotional side.
Take care and stay comfortable will update you when l get home.
lots of love
Jacqui x

Hi Jacqui,
Just seeing how you’re getting on. I did try to private message you on Friday but it said your user name didn’t exist! Then I lost my whole message and didn’t have the energy to write all over again. Not happy!! I wrote to the moderator and they have ignored me so far so not sure what is going on???

Anyway, I hope you got the buzzer system sorted, it really is peace of mind. Are you home now? I hope you get to enjoy this beautiful sunshine.
I went to hospital yesterday for an infusion and found out how close I was to not coming out when I was in just now, I’m glad to be given this extra time, the brain radiotherapy seems to have improved some of my symptoms so day to day living is much more comfortable and we even went for a picnic this weekend which was just lovely.

Take care and you stay comfortable too, let me know how you go
Lara xxx

Hey Lara, so glad to hear your out of hospital, i’ve read your sisters postings and just hope you know I have been thinking about you… don’t know if you remember but my mum has the mets in the same place and so far so good no major symptoms other than the chemo ones!!! we are hoping to take off down south for a couple of days ( we live in Northern Ireland) so will send a message soon!! but again was really relieved you got through it. luv Tabby