I have been in Menorca for a week so have come back last night so first time able to get on pc. Went straight to your blog to see if you had posted as i always do, then when found you hadn't, came on this site for news of you.
Thank you so much for your honesty about your experiences, yes you are one brave and courageous lady who i admire so much and yes Kate, you are an inspiration to us all. I am so sorry that you have been having such a dreadful time but hope that once again you will pick up, thanks for coming online again I don't know how you manage to type so much for us but is is so very much appreciated.
Love and best wishes to you and your lovely family
I am another follower of your posts.......
Where do you find the energy to type so much!!!!!
Wears me out just reading your posts!
I hope you have had a good weekend..
We do not know each other, but I have been reading your posts for some time. I just want to say that I admire your courage. I am glad to hear that you are back home from the hospital and I wish you all the best.
So glad you're home and were sounding so chirpy on the steroids! Hope you're enjoying your weekend and 8-year-old is appreciating time alone without the twins.
Big hug and fond thoughts
Just a quick HI from me - I have been away for a couple of days and was wondering whether you are out. Onwards and upwards (or maybe, for us, it should be onwards and sideways?)
its great to hear you're home again and to see you posting. Thinking of you lots,
am so happy to see you back online again. Although I have never met you (living in Belgium I probably never will) I can't tell you enough how grateful I am to you. You were here when I needed advice the most and made me realise I do have a say in what happens to me regarding treatment. Before I just accepted what my onc told me. I have since realised that they always have to give you the worst case scenario but I was really down at the time we first "talked". You are an inspiration to so many.
Really good to see you posting again Kate. Hope the creme brulee was good - it's my absolute favourite dessert!
its great to see you on the forums again, its a daily ritual to follow your posting, you are such an inspiration, if I could make brule, I would send you one specially
I too find it hard to know what to say. You are remarkable and courageous and an inspiration to many many people. Thank you!
So glad to hear you are home again and enjoying the creme brulees (my favourite). Don't know you but think of you everyday and wish you strength.
Love to you and your family.
Sooooooooooo good to hear that you are home again, Kate 🙂
Your posts, although so sad because of the sh*t theme and what cr*p you are going through, always make me smile!!!!
Love you loads
Glad to hear you're back home again and online. Sorry you're having such a rotten time of it though. Take care and enjoy that creme brulee,
Sorry to hear you have been unwell again, I've not been at home the last week and only logged in tonight.
Glad you are out of hospital - take care.
lovely to see you back on line. I was in Spain last week so I didnt find out you were in hospital until yesterday. Sorry you are having a rotten time, this disease really p....s me off. So many of us are having a crap time with it.
You are amazing and a great inspiration to us all!!
Lovely to see you home and chatting so much. feel really humble reading your post and think you are so brave!!
Did I get my taxol on thursday? Did the day go without a hitch - NO!!!!!
I got completely forgotten about and pharmacy technician threw a sulk better than my 8 yr old son so had it today and came home eventually via the secondary school, the opticians and fish and chip shop about 530pm to the biggest mountain of black socks anyone could imagine and then it was twins off to weekend scout camp. Trying to find various things that had going gone missing whilst I was gone including 1 portable phone, 1 freeview coontroller and odd socks. Having tea and a creme brulee and I'm back on line.Hurray!!!!
High as a kite through 8mg dex and 60mg MST - wonderful combo and now trying to get 8 yr old to settle so that I can make some sort of effort to calm down and go to bedmyself and not be disturbed by a wonderful 90 yr old counting from 21 - 32 everynight and describing how you make a cup of tea!!!! Also I can make a cup of tea when I like and how I like - all patients banned from kitchen now and be able to use my wheat bags as not able to use them in hospital as they were an infection risk!!
Think you were right about not calling myself dippykate - it 's not me that's dippy, it's the effect I have on other people at the hospital which is so dippy!!!!
News, not much new. Well, MRI showed nothing new apart from T6 vertebrae being very, very bad but only have a small fraction of rads left so willl leave that for now. T5 and T7 also affected but not so bad and they are puzzled why so bad in one spot but surrounding area not so bad. No new growth in rest of spine so good and no cord compression - so wonderful. Abdo xray - showed constipation and they don't know why. Think I've got a lazy bowel - well that's a family habit or it's the dex and my general muscle weakness and that I really am a lot more ill than i look and sound and my general standard of fitness is misleading
Didn't realise there are 2 types of protein in blood. The one associated with malnutrition with me is just below normal but the other one giving the 'picture of health' is quite low but stable low and the one type of liver function test associated with cancer growth is still high but stable but creatine and bilirubin etc fine and iron now 99 which has become my standard. So feel living in inbetween place where I look and feel quite reasonable but am very, very deceptively ill and when tax stops working or just can' have anymore will go down hill very quick and that will be the end. Of course, I plan it differently but know how weak I am now and options limited but also how to get round some difficulties and get the most huge amount of support from forums, friends and family and now day carers which I couldn't manage without and especially my hubby who has gone part time and my children who have had to learn to do a lot for themselves very quickly.
Still so excited I can eat anythoing apart from very fatty foods as it gives me terrible pain and my stent feels like it used to when I had gall stones many moons ago plus it extends right up into my lung which then sets off my back pain!! MST definately helped or wouldn't have done what I did today at all. Dietician says I must still have at least 1 fortisip/creme a day due to muscle wastage but am digesting food now.
The onc said it is the hospital's first experience of giving someone all the types of chemo I've had in such a short period and to be well enough to continue with weekly taxol so learning curve for them as well. The chief onc did come to see me today after yesterday's cockup which I'll post about another time.
Bladder and bowel problems completely went after 3-4 days but now had taxol today- symptoms have returned really badly so trying to get hold of district nurses for help now.
Lost so much hair - looks quite odd but will keep it till it all falls off and use hats, scarves and wigs till returns. Have never had such a small, flat bum - always had huge , muscly bum before it went huge and flabby so relief that what I feel in the bath is the normal tailend bone and nothing sinister. Nails all peely and skin so dry. Got through half a tub of Body Shop body butter in a week! so look very cancer patient now.
Thank you so much for the replies to the post - Jane - I got them in the post yesterday so it is the 'dippy' effect' you forgetting to leave them with me!!! It makes my hubby and family feel better when I tell them I've had these replies. It does really help.
Yes - you were right - I did delay going into hospital because of the coffee morning but as it had happened the week before for a few hours that was why I was not initially so concerned until the liver pain started which was why I went in urgently and that was after a cock up of communication with the person supposed to be giving me a lift. I was so high on codeine and oromorph and trying to sound normal in front of the children they misinterpreted my urgency from friday 4pm (as it was at the time to monday 4pm - don't ask - will try to explain all this more privately!!!!)
Anyway, mum staying and sister and family here tomorrow. Weaning off dex now so should calm down. Liver pain better on MST and will miss twins till sunday so will only have little one here and hubby. Not sure you really want descriptive update on bladder and bowels but coping.
Will eventually tell you what happened yesterday and why I didn't get tax and update my blog but now I feel the need for another creme brulee and damn the consequences!!!
Thank you all so much for your support.
BTW, we raised Â£200 for MacMillan coffee am plus sales for BCC which I've not added up yet and MacMillan orders. The children on saturday afternoon apparently went out with the wheely trolley with a pricelist and sold the day before's leftovers and made and about Â£20!!!!
Had really bad internet withdrawal symptoms as well so feel happy to be back and thanks for yoour replies.
So good you could visit Jane, I am sure kate enjoys you being there and being able to talk frankly and honestly about everything.
Just wondering how Kates taxol went today and praying she can come home as i know thats what she would want.
sorry to hear you are in hospital, good luck with todays chemo.
Forgive me for posting late, been away no internet for a week.
I've never chatted to you before but I just wanted to say that i admire you strength and your giving nature. I know you are fighting a very strong battle, but I'm pretty certain, you are a stronger fighter - sending you some strength.
Pleased to hear Kate is improving tell her that some of the girls on the chat tonight asked about her. Hope that her taxol goes without hitch on Thursday and that she will be able to go home
Thanks everyone from Kate. I carefully printed out all your messages when I went to see her in hopsital this afternoon but managed to bring them back with me by mistake...oops sorry..mutual chemo brain?
Kate's bowel and bladder problems are better controlled now...may 'just' be taxol side effect. She will have another taxol on Thursday and hope to go home after that. We had a great chat...life, death, the universe and cancer.
Juat adding my love and hugs to everyone else's good wishes. And sooo glad your swallowing's easier
love Jacquie x
Hope you feel better soon kate, you really have had it tough oiver the past couple of months. Hope things will improve for you soon.
please pass on my best wishes to Kate ... i just can't understand why she picked that name - she's never sounded remotely dippy ..... it would be like me calling myself "angelinajolielookalike" .... it you were at this end you'd know what i mean!
love FB xx
Kate, I hope you get patched up quickly and back home with your family!! Take it easy!! Funnyface
please pass on my love and best wishes to Kate, hoping that it gets sorted out quickly for her. Thanks for passing on her message
Just had a text from Kate - will quote:
QUOTE - Usual bd post chemo Sunday. To see pain control, dietician, and own team tomorrow. Having scans but expect to be home on Tuesday. I think Taxol causing bowel and bladder probs...can bear it as can swallow. Lumps and skin mets smaller..and breathing better. Think liver can't cope with fat - hence pain....Regained some weight and muscle...Kate x
Just lke Kate to find something positive.....heaps of thoughts...
Sorry you're back in hospital Kate.Thinking of you. Your supportive words helped me so much this week - I'm routing for you. Your positive attitude is amazing. Hoping to see you back on here soon.
Love from one steroid-fuelled girl to another!
Hope u are soon on the mend and back home with your family. Sending you lots of love and cuddles and am sure you are giving them all the run around so to speak.
Thanks for letting us know Jane.
Lots of love
Thanks for posting this about Kate, She gets over one hurdle only to be faced by another! Cant believe she did the coffee morning before going into hospital, she is one strong woman...
Kate - hope you get well soon and they can give you some answers as to why this happened.. I'm also on Taxol... its got some nasty side effects... its caused to me retain water last week and i ended up in hospital with legs and feet so swollen - i couldnt walk. Some anti biotics and water tablets and 7 days later.. i'm almost back to normal.. i wonder if your symptoms are related except.. the other way round?? worth mentioning do you think?? perhaps the taxol irritated your bladder or caused an infection??
I hope you get to meet up with Jane. Take care and speak soon
So sorry to hear you are back in hospital, here's hoping they sort it out quick and get you back to your family.
I am really sooooooooo useless with words - can think them, but cant tap them in to the keyboard!!!!!!
Keep your pecker up!!!
Am sooooooooo thinking of you and sending you great big cyber hugs ((((((((((HUGS)))))))))))
Love Anne xxxxxxxxx
I really hope this problem is nothing too serious and is soon under control. Thinking of you and wishing you a speedy return home.
I hope you can print out our thoughts and pass them on to Kate. Thanks Jane.