Thanks to everyone for their lovely messages. It does help.
Was beginning to wish I hadn’t come home as there was so much mess but now I’m on the internet I feel better.
My skin is beginning to redden now - finished rads on thursday and have started taking steroids to reduce the inflammation caused by the rads in my oesophagus. Seems to be helping but can only stick to liquid food at present and docs say the pain and difficulty with swallowing will worsen over the next week so rather frightened by that. They will tube feed me if necessary but would rather not -still got enough fat to live off and got hickman line for fluids if worse happens,
Have to say the hospice is not the quiet place I thought it would be but this is due to 1 rather hysterical woman who seems to have little support and a mixed age of children - she really needs some help but not sure who will give it to her or who she will allow. Instead as usual, it is down to the other 3 of us to support her. Nurses all nice but don’t seem to know how to work the new drip machines which is a bit offputting.
Rather scary having the ‘do you want to be resuscitated’ talk - wasn’t expecting that yet but I suppose with the fluid in my heart and the tumour pushing on both sides and my left ventricle not working well, it needed to be discussed.
Will be here for most of day and back for a little time tomorrow.
Thank you for all your kind words
love Kate
Hi Kate
glad to her you are well enough to come home for a while and read your messages and that you are getting sorted out.
I have not posted to you before but I have been following your progress for a while and just wanted to wish you all the best
Dawne
kate I havent posted you before but have been following you too
Good Luck
Kate
I have being following your progress and threads for a while and just had to say thank you for being an inspiration to so many people on this site
all my love and best wishes
Ailenex
Hi Kate, Like the others I haven’t posted before but just wanted to say I am thinking of you. Hope you have a good day at home. Try to ignore the mess! Hope the hospice lady gets the proper attention and care from the right people soon. Take care and best wishes, teacup xx
Dearest Kate
You take care now. I have followed you for ages and never posted to you before. You are a great lady. And just like you to be caring for others in all this. You are in my heart.
Much love and strength
Dilys
xxx
Hi Kate,
its always good to see you posting, and I hope you enjoy (well, despite the mess) you’re time at home,
Take care of yourself,
Sending cyber hugs (((((o)))))
Kelly
-x-
Dear Kate
I also have followed you posts here and on the other site but have never replied before. Just wanted to say I’m glad that you are managing to spend some time at home and hope that the after effects of your radiation treatment are not as bad as you fear. I know what you mean about hospices not always being the oases of calm we imagine them to be. My brother was in a hospice last year. One of the other patients there at the time had a large extended family, most of whom you would not wish to meet down a dark alley in the dead of night, if you know what I mean. It seems that had all fallen out with each other at various times and were intent on carrying on their feuds in the hospice , even though their relative was so poorly. It didn’t make for a very relaxing atmosphere at times, I must say. However the staff were all very good - my brother had brain mets and wasn’t the easiest of patients. Is there a possibility you could get a side room - it might be worth asking. Anyway I hope the rest of your stay is more peaceful and that you are able to get some rest
best wishes
Anne xx
Glad you managed to come home for a while…just ignore the mess!!
Enjoy your time at home.
You never fail to amaze me Kate…hope the hysterical lady calms down…must be awful to be in that position with no support.
Can only imagine how difficult the resuscitation talk was…especially when your not prepared for that discussion.
Hope this treatment eventually eases some of your pain/difficulties.
Sending you strength, love and hugs
karen xxxx
Must add my good wishes too. How strong you are to be thinking of others.
Enjoy your time at home.
Sarcath
glad you’re home Kate thinking of you and your family how hard it must be for you love Eileen
Really glad that you’re back Kate
lots of love
Magsi x
Hi Kate - been following the links and posts these last few days etc… I hope your weekend is a happy one - despite the mess!! Take care xxx
Jenny
Hi Kate,
Sorry to hear about your current problems…have you asked your doctors about Fortijuice? I drank 3 cartons a day of this during FEC chemo, complicated by Crohn’s and had to stop methotrexate chemo. Hospital sent them to my home foc, all yucky 9 flavours, but 3 cartons of 900 calories each day kept me alive.
Take care,
Liz.
Kate - Been checking Gobby Gang for ages to find out how you’re doing. Lovely to see some news.
Great to hear you are back in thick of home life… Loving housework type angst - so NORMAL sounding (having spent a day raging at family’s inability to pick ANYTHING up or put away…) The simple things and stresses of life are often the best - I think they make it easier to feel part of the normal world! I remember one day watching stroppy Tesco mums and delighting in the fact that I was one of them and wanting nothing more than banal normality to continue. This may sound strange to some, but sometimes my counted blessings are very simple.
Hope the rads REALLY kick in soon and you will be revving up (in the Moggy) for summer hols.
Jenny
x
Hi Kate - So lovely to hear from you in person, and to know that you had got home for a while. Can only echo everything that has been written above. Do hope that the hospice may becomes the oasis of calm that you were hoping it would be, and that you can be looked after a bit as well as looking after others in your usual lovely way! It’s always good to read of others here who have been able to talk to you or see you, and to know that you have such a great support network as well as your family. Thinking of you and do hope that the rads side effects are not going to be too tough. Sarah x
Hi Kate
Just to add what others have said and that I really hope the rads start taking effect soon.
Take care lovely lady…
hugs and more hugs
P xxxxx
Kate
I think you are a truly wonderful lady - and you must be amazed at how many ‘silent’ followers you have!!! hehe!!
I wish you every luck with this latest treatment and hope to see you posting very soon!!!
I’m sooooo glad that you have managed to get a bit of ‘internet-therapy’ - I think that I’d get the shakes if I couldnt get to my laptop!!!
Take care of yourself and let others do so aswell - keep that chin up!!!
Love and best wishes
Anne xx
(aka another of your Followers)
Hi Kate
hope you are feeling o.k. have you got some manuka honey I had a teaspoon every morning with a little warm water it kept the infection under control.
Love Debsxxx
I may be too late to catch you Kate as you may have goen back to the hospice.
So lovely to see you on here.
I am just hoping these rads give you more time. My mum had rads to her oesophagus and initially it was hard going having a liquid diet and tube in her stomach to feed her, but evenutally she could eat reasonably well.
Gosh how awful them talking about resuss, I am sure most of us on here cant even imagine what that must be like.
I am sure the kids loved seeing you, ignore the mess of the house love. Could hubby perhaps pay to get a litle help or ask for it.
Why arent men as capable as us hey?
that woman in the hospice sounds ‘hard work’, it shouldnt be up to you and a few others to help her.
Anyway thinking of you Kate.
Big Big Hug Rx