Well I am 40 and back from paris (I got to the milestone I was so dreading I wouldn’t see or be in good health to enjoy) and had absolutley fab time, will bore you all with the details another time.
Vicky thanks for update although did have big chat with Sammy yesterday, sending both you and Lynn my love and I have updated Claire and Trace, if you and Lynn are not too inundated with visitors then talking with gang we will be there like a flash, give Lynn the choice, can she put up with us mad lot fussing over or just wanting some different talk around the hospital bed, ie bodily functions and dried up bits and bobs our usual tasteful talk, if not we will understand.
Kate I think you are in rehab really from reading all your posts, anyone famous in the next room?? Glad to hear the weight is staying on and food is staying down, when I was visited my mate last year she was smoking and consuming rather large amounts of baileys while in the hospice and private terrace too. The care is so totally different and relaxed and now that you have been allowed your input you sound more at ease (the sherry must help too) and like you say easier on the kids, sometimes feel the smaller things do get picked up daughters more than boys. My head is in a spin, are you starting more chemo once rads burns ease off or still waiting for definite plan.
Well I will go, quite knackered again (although walked miles and miles on sunday), had a call from JR while in paris, my tidy up recon surgery has been brought forward from autumn to 30th July, so because opted for local this time I am getting a phone call pre-op assesment tomorrow rather than having to go to oxford, that will be interesting. (they will probably balls it up knowing that lot)
Big love and special hugs to all GG, love Debs
XXXXXXX
Debs - sounds interesting your tidy up job I mean!!
Had an up and down day!! Some probs with life assurance and mortgage so bit financially scared at present - have to sort that out tomorrow.
Went to day care and had my toes done so much better now and then helped with card making and good chat with the other ladies today. The men couldn’t be bothered to help!!!
Saw the social worker tonight without hubby. Worked better and spent some time with youngest on his own and social worker - she is going to case some outstanding issues at school regarding his emotional support but also feels like we do that not all his problems are due to emotional difficulties with my illness as he is so routine obssessed and can’t keep still. His report his amazing in that he is well above his age for reading, maths and science but well below for effort. He is very clever and knows it but can’t socially interact properly always and had my mum intears tonight so think will push for adhd/autiism referral as there are definate signs there or else an emotional attachment problem. That started before I was ill and my illness has compunded it.
Spent the time with the social worker outside in the garden which was lovely to have that privacy but still be somewhere outside and lovely. Daughter wants to raise money to buy a pond in my memory here - she even ants to dig it herself so she must feel comfy here.
Had great success - I’ve eaten some gateau without it being blitzed or having loads of liquid. It was supposed to be bannoffee pie but it was defianately a cake!! The kids were so pleased and it was something they were discussing with the social worker about how scared they’d been when I was sick all the time and how happy they were that I ate the cake normally. Back to Starbucks and John Lewis for ckae fixes then!!! My trousers - size 16 are still falling down so must have lost more weight but then all twitchy due to steroids.
Back in Bay which is not nice as all over 70 and are deaf, demanding and incontinenet. Every time I need the loo, I or the nurse has to clean it. This will not help my constipation. At least there are lots of bolt holes for me to escape to especially the wifi connected little office which is now my second home and as I said the garden and in the day, there is the daycare rooms which are lovely. Must get hair straightened tomorrow. She scalped me last week so not pleased with look - needs to grow.
Plans - who knows, Still uppinjg morphine but hope to reduce that now and then steroids as although they give me energy, they make me anxious and hyperactive and moonfaced. Legs gone all skinny as well this time and muscles feel weak. Have helped breathing or has that been the rads? Even if can’t eat normal food ever again, now know that life is liveable on pureed and can be healthy and not to be sick is bliss!! Plan to have zometa and herceptin nxt week and see onc on 23rd july and hope can get to end of august without chemo - or is that asking for too much??
Can feel it is a possibility to travel to Lynn if she wants in nxt few weeks but still too painful at present. Want to see you hun.
Must go and see what else is happening on internet and then bed and hope the woman next to me doesn’t wake me up screaming like she did last night and that I don’t sit in poo or blood!!! At this rate, I will go home if can get enough support but still too tired and if lifting a pillow is painful, can’t see I can lift a kettle to make me acup of tea to go with the cake!!! That as you know ladies will never do - Kate without tea and cake!!
Ooooooh ducking hell Kate get out of there now, if you can get your mum, sister or your wonderful friends to help get out, sorry if anyone else reading and offended but the last thing your kids need to see is old, disoriented and confused woman in a mess around you, believe me I saw it awful with my grandad as a child and that was bad enough, still remember the awful smell and my mum frowning at me for neally throwing up and sitting crying, you dont need to lift a kettle just get OH to make a bloody flask, but if you stay in those conditions your daughter will loose all her peace and it will also get you down,
Well it didn’t rain as much as the forecast said so was able to sit outside most of the day which was lovely. Saw my mum before she left for her home - be back next wednesday. She needs the rest and sleep I think. Then a friend popped over and then the vicar to discuss funerals. OH came over and I showed him my end of life and funeral wishes so he was more receptive to that. Funeral directors tomorrow!!!We want to ‘do a Dom’. The highly recommended one is over £1000 more and I want to know why but to haggle over a funeral seems a bit surreal.
Spent last night asleep laying flat and no oxygen - haven’t done that for ages so such a relief to my hip but by 430am, I got reflux pain so had to sit up and needed oromorph which was a shame as I thought I’d got the pain under control and was going to ask about reducing the morphine. Unfortunately, I obviously wasn’t as quiet as I thought and made the thong wearing lady hallucinate so that I was an axe bearing murderer. The nurses came pdq!!!
Had hilarious morning with mum yesterday. Mum was taking me home to collect some paper work for the financial side of stuff and I wanted to pop into Sainsbury’s clothes sale so just asked if the others in the ward wanted anything. The 78 yr old one said ‘knickers’ so trying not to look too surprised, I asked what sort - imagining Bridget Jones pants. She said ‘come here’ so I did and she lifted her sheet and her nightie and showed me her thong complete with incontinence pad!!! My face - it was so hard to keep a straight face!!! In sainsbury’s my poor mum got an education about thongs and we spent some time finding some frilly ones which she was delighted with. The lady was so pleased with them that she keeps showing them off to the nurses and her visitors!!! One of her visitors was a mum from little un’s class so I think that surprised her, firstly the rumour is true - I am terminally ill and secondly we bought these thongs!!!
Must go as tired now.
My poor eldest niece is in hospital and it’s a bit worrying and confusing. They thought it was appendicitis but took out a normal appendix. Now they are not so sure what is wrong as has high temperature and needing intravenous antibiotics. As I’m getting this all third hand, I don’t really know what is happening and no further news yet.
Kate
Oh girls posting late as just got in from night out hey!! dosnt happen often. Sounds like you are getting alot sorted kate. Lynn darling thinking of you , and what tidy up debs?looked alright to me!!!
right really too pi88ed to type so will go now
Kate I love the thong story (did you go bright red, as in thongs not cheeks) and good to chat the other night although right knackered next morning and slightly hung over as ended up finishing my bottle of french red.
I know you are one organised lady, but meeting with the funeral directors (ouch) cant you just leave instructions with a good friend and threaten to strike OH with lightening if he doesn’t follow them, thats my plan, if and when.
Has anyone heard anymore from Vicki, do you think we will visit Lynn, I would come and get you Kate if needed. Trace and Claire did text back, I thought they may have logged on, perhaps soon.
Just trying to sort my paris and florida photos, absolutley loved paris, hotel was just around the corner to moulin rouge, the show was fantastic, loads of sex shops and pervs, but bloody good fun, was gay pride so had a couple of american gays insisting on buying me birthday shots so when we got in at about 3.00am was slightly pissed. Had a glass of wine on the champs de elyees at 12 euros (although it was a large one and in good suroundings) and a flute of champagne on the top floor of the eiffel tower at 10 euro and did the 11.00pm river cruise so got to see the tower all sparkly. A very good city and a fab 40 birthday.
Love to you all and if any of you get any news, let me know.
we must have been typing same time, by tidy up (thats my speel for non bc mates and family) but to you lot its nipple recon and lipo to boob as still about 2 cups too big (obviously a male surgeon), as you know I like to keep it all seperate.
Op is 30.7.08 and time scheduled is 1.5 hrs, but opted for local rather than general, so allowed home same day. fantastic.
Hey girls
I dont know where to start…
Kate it sounds as tho you are keeping everyone on thier toes, and i just knew that you wouldnt be able to stay there without finding us a good story to giggle at!!! But, seriously, am in total agreement with Debs cant you leave all the funeral stuff to someone else???
Debs, am so sorry hon, so wrapped up in self i totally forgot it was ur birthday - happy 40th babes am so glad it was a good one and cant wait to see fotos. Thanks too for the text. I did go to my mums yest to try and log on for a bt, but dads friends staying from oz and is computer mad so wasnt allowed on it!!! Bloody cheek of it. The sooner he f**ks off back to oz the better!!!
Clare hope all goin ok with u now hubby gone
Sammy good for u, hope it was a good nite, the only nites i have to look forward to at the moment is the next 6 at work!!!
Lyn, my darling, i just dont know what to say. I was so shocked when i got debs text and to be honest havent texted you as i just cant think of anything that would mean anything. there is nothing to say except its all b*****ks. Hillingdon, where is that?? Is that up north?? Can prob get sat 12th off (next sat) or possibly even the fri (11th) if thats any good to anyone for a visit???The friday would probably be better for me. If any of you have any other plans for dates or times please let me no and ill see what i can do. Let me no girls and sorry i havent been on here.
Take care to you all. Trace. x
I txted Vikki last night - Lynn now at hospice with family and overwhelmed by visitors so think we need to liaise with Vikki if appropriate for any of us to visit etc at present.
Was doing better at eating - bread and butter puddding and rice pudding without blitzing it first but have had bad chest pain on left side of sternum over previous rads and this goes right thru to back. So have had to up the oromorph. Was hoping to reduce steroids and MST as felt better and want to go home. Yesterday and now today beginning to wonder if good idea. I’m fine just laying around and writing, typing and cross stitch but the minute I do any walking or even lifting a pillow, the pain comes back. I don’t mind upping the MST but getting moon faced already so would prefer to reduce steroids first as don’t think they are doing anything to relieve the pain as it feels muscular and nerve so steroids doesn’t seem the right thing.
Feeeling like I’m living with a group of grandmas but very lovely ones and they are all actually very lovely and quite quick witted so we have a good laugh and look after each other!!!
Waiting to see if pain will go and for doctor to arrive as nurse doesn’t feel confident to flush line with out having a doctor on site. Said I used to do this my self and would again. All i need is the equipment and someone who understands the concept of sterile fields but she wouldn’t be shoved so cross as don’t want blood clot in line.
Love to you all
Kate
Thanks will text lyn.
Not sure i totally understand. I got the message that there is spread and all care is now palliative, but is lyn in hospice having a bit of a rest as you are and preparing to go back home with her symptoms managed? or not??
If you hear any more please let me no
was supposed to write ‘what’ not ‘not’.
Sorry that must have soundeed really cold. Am finding it all a bit hard to take in. I no she is poorly but how did it all happen so quick or was it just missed? I hate this ducking disease (debs, have used the word so much - fone has given up and is allowing me to use f**k not duck)! Im sorry for all the questions but feel a bit out of the loop. When she comes out of the hospice will it be to family in Brum or will she be allowed back down here?? and is Vikki gonna stay with her the whole time or does she need to come back? Is anyone else able to visit on either of those dates if Vikki says ok? Not sure if Lyn is still replying to texts but will give it a go, if not hopefully Vikki will pass it on and reply on her behalf.
Mind is all in a muddle and am too upset to think clearly at the moment.
lots of love to our gg. x
oh god … I dont post in this thread ever just read it …but I am sittingg here on a wet sunday morning and it has brought all sorts of memeories of hospices and palliative care flooding back … I just wanted to say that you are all amazing !!! i got this disease last oct and had all the blah blah treatment you know waht I mean …
It has upset me so much to read this but you inspire me with your attitude …I may or may not pop in again …but just want to end with lots of love to you all xxxx
Maz
Lynn probably won’t remember me but I met her at Westminster last Autumn. I have been following her progress with much sadness. She is so young and feisty. This breaks my heart. Please pass on my thoughts and best wishes, any of you in touch with her.
I’ve been thinking of Lynn too…we exchanged a few emails when she was first diagnosed with mets…I hope she’s as comfortable and pain free as is possible…With Love, Belinda, xxx
Like Jenny I met Lynn at the secondaries event in Westminster and then afterwards in the pub. She’s a funny, feisty, beautiful young woman and it is such c**p that she is so ill so quickly.
I hope some of you get to visit Lynn, and that she is now as comfortable as possible.
Trace - will try to email you.
Spoke to Vikki yesterday - Lynn very over run with family visitors (you know how big her family is!!!) at present so knows we are thinking of her but wants to wait for a visit from us at present.
She is hoping to go home at some point soon so then it will be easier all round to see her there.
Vikki and Lynn are very tired at present and just need some time to get their heads around the news about how quick and extensive the secondaries are and how to live with these problems that they have caused her.
Probably easier if I pass on news from us to Vikki/Lynn as they are so overwhelmed by messages etc so please PM/email/Txt me and I will get the news passed onwards and back to you.Sorry - if that sounds controlling of me but have the most time at present to organise this.
Have to add to those who met Lynn at Westminster…I was initially struck by how young she is …29 at that meeting and secondly by what a lovely, fun-loving young-lady she is. I thoroughly enjoyed meeting Lynn and the others who joined us for the drink in the pub afterwards…This disease is just c**p. My heart goes out to Lynn/Vikki and family at this difficult time…and also to all you Gobby Gang who are clearly so close to her.
Kate you never fail to amaze me, if I lived closer to you I’d willingly be your carer.
Your posts are so honest and I admire the way you continue to post even though things are so very difficult for you.
I hope you manage to get home on Wednesday sending you a massive hug…and lots of love xxxx
Lynn/Vikki…also thinking of you at this very difficult time xxxx