Hi all
I’m so overwhelmed by all your replies and show of love and concern. It was always one of my lines in job applications that I wanted to make a difference, so if I didn’t do that then, then hopefully I seem to be doing that now!!!
I’ve been moved from the single room to a different bay - I’ve got the bed with wifi!! I met the woman whose husband paid for the wifi to be set up so she is so pleased that someone is benefitting from it. I didn’t have the heart to tell her it’s only very limited.
It’s very odd the attitude from the medical team about how ill I’ve been. They all say they are amazed by my recovery and didn’t think that I would ‘pull through’ but even the palliative care consultant wouldn’t say the word ‘death’ !!! They all say “you’ve been really ill, we didn’t think you would make it/pull through”. but none dare say the ‘d’ word!! and thentThey worry about me not being realistic!!! It’s abit more difficult when they don’t use plain language about’ ‘dying’!!! I’ve always asked then to be honest and upfront with me but they still aren’t or can’t!!!
Good news is that I’m seeing the onc on thursday for my herceptin and zaledronic acid and to see if I can restart taxol but expect that will be next week and then home on friday. Not sure how I’ll manage the stairs yet but having a physio assessment tomorrow for that.
Social services have agreed to give me extra help at home so now have to see if need to pay for the extra.
Hubby got turned down for carer’s allowance so we need to appeal about that so will be seeing benefits advisor from MacMillan shortly.
Only need 2 litres of oxygen and have spent a few minutes off oxygen without going light headed today - didn’t mean to - the portable run out and then later, I forgot to put the nasal specs on!!
So will see what onc has to say on thursday and may get to live chat tomorrow if I remember - I was doing well with remembering what day it was etc but this evening suddenly thought it was tuesday so feel as if my brain is still not fully functional - but there again, don’t think I know anyone who says their brain is fully functional regardless of ever having chemo or not.
Very wobbly on walking still so will need help with shower tomorrow or might end up who knows where!! Hope that improves. Rubber leg syndrome is very odd - that’s my name for it.
Thanks again for all your support. It helped my hubby know that so many people cared.
Take care
Love and thanks to you all
Katexx
Hi Kate,
saw your update on bcpals too, and am so glad you’re giving this thing as much of a kicking as you can manage,
We’re all routing for you sweetie, hang in there!
Rebecca
Oh Kate made me day reading your post lots of love Eileen
Hi Kate
I used to come on here alot to ask questions for my sister and do look in now and again, ask social services/nursing staff to apply for continuing health care funding which will pay for any care you need and any equipment etc. You should not be worrying about this and as a qualified nurse who fills in these forms regularly I would be shocked if they turned you down.
Cathy
Hi Kate,
Read your latest blog this morning and it resonated so much with me. You just write what I want to express but find it hard. You have really helped me get my thoughts about this horrible disease into perspective.It is horrible and I don’t feel the brave person people around me like to think I am. Sometimes I wish I had a clever response to the many people who say after you’ve said you’re having a bad day or week with the treatment “Oh but you’re looking really well” as if you’d made it all up or as if looking ok must mean things aren’t that bad! My neighbour said the other day " Oh you’ll live forever!" Well I think that’s a little optimistic for anyone!! I suppose we all struggle with the words but you say so much of what I am often feeling inside and daren’t express and I guess I’m trying to say thanks for helping me to try and express more of what I’m really feeling to those around me. I too think that it actually helps to face the reality and sort of own it instead of hiding away from the death word hard though it is. I really appreciate your honesty and hope you know that your words really help even though you’re in this awful situation and I think you must also be helping your friends and family so much by being able to express how you feel. Am also having a night with choccies - bad day - steroids wore off today after taxol 21 last week! Thinking of you, Anne x
You continue to astound me Kate! I am so very pleased that you have come through this crisis…what great strength and courage you have! I hope you are soon well enough to return home to your family and maybe meet up again with us for a meal and a drink.
Hugs
Dee
x
It’s great to hear you are on the up, I have been thinking about a lot recently, hoping and praying that everything including yourself would be okay for you and your family. Or as okay as it’s ever going to be with this horrible disease.
I wish you well Kate
Diane xx
I’m absolutely delighted for you, Kate.
X
S
It’s so good to see you back Kate! I know you have given me a lot of hope and courage to get on with this c…p disease. I’m sure you have done the same for many others who come here. You can be sure of one thing…you have made a difference, you have done good!
love Maroke
Hi Kate,
2 words ***** YOU’RE AMAZING!! *****
Havent been on here for a while, and just catching up nosing the latest comments/topics, and just really pleased to hear you are battling strong as always…Well done you !!! 
you truly are an inspiration to all of us - thank you!
love and best wishes
Rachel xxx
Hey Kate,
So pleased you are feeling a bit better, I really hope you will be home soon. Probably sounds a bit soft but your strength and determination really helps me too.
cheers
caroline
Well Kate - I will be realistic - I am really delighted that you didn’t die. Even if the medics pussyfoot around, I suppose it’s important that we don’t. You continue to amaze me, all you’ve been throught, must have knocked you sideways, and yet in your posts, you come over as having so much resilience and courage. Astonishing woman. Well done, and keep on keeping on. xx
You really are amazing Kate.
Sending love to you and your family.
Karen x
Hi Kate, Sorry I have not been on here for ages and have just seen your post.
Thinking of you
Fay
Delighted to see you back online again Kate. Here’s hoping you continue to gain strength and improve.
You are making a difference to so many; your willingness to “talk” openly and share your fears and feelings is so appreciated.
Sending love to you and your family
Ax
Hi Kate
It’s great to read your posts. I do love your no-nonsense approach - it used to terrify me initially, but now I really appreciate the honesty and selflessness with which you share the highs and lows of your life with us. I’m so glad that you’ve responded so well to treatment and hope that you’re comfortable and getting good care from the team at the hospice.
love & hugs
xxx
Oh Kate how lovely to see you back here. Sending you so much supportand a wry smile at what happens in hospital. Take them all on! Thinking and praying for you dear Kate.
Much love and strength
Dilys
xxxx
Hi kate
So glad to have your message and hoping/praying you will continue to improve. Had to have a wry smile about the d word…I had my radiotherapy at Jimmys in Leeds ie the great oncology centre of the north…they never mentioned cancer…just paraphrased it as “ladies who have your problem”. Give me strength! Thinking of you Kate, lots of love
Louise x
Hi Kate
I keep getting told by people I work with how strong they think I am ,but by god girly, if only they knew hey !!!
Mary
xxxx
Hi Kate
I havent managed to get on here for a while -Im so sorry you seem to have been going through the mill in my absence- You are in my thoughts and prayers, and I really hope you continue to improve, and gain strength. Lots of Love Debbiexx