WELCOME BACK CLAIRE and I am so pleased that I am not the only bad mummy at the moment.
phew that took some reading, sorry to hear about your grandad although do think its romantic in a sort of way for you grand parents to be burried together. that sounds bad but its meant in a good way. Lets hope the braca 2 is negative, I know you want to get the other one done, but its so much better for your sons and your prognosis. and to be honest they look good together. and if travelling M40 you know you are always welcome. and yes we need to sort a night for OKH’s to meet.
Kate good luck tomorrow and have a good party, eat loads especially if paid for, 18th sounds like a done deal for get together, if OK for travelling to reading then I will try and sort roughly the same time so we can meet usual bar. I only have my photos on computer so will get printed of for you. your coment re non bc friends rings so true, I have a lovely loyal bunch of girlfriends and a sister but I open up so much to you gang, they dont understand and I dont expect them to, they do want to know more and bless them they did come to the hospital after my mast to wash my hair not just sit in silence but I just cant face going through all the facts and figures with them, as far as I am concerned they are my escapism, the same as work.
Love the info on the train cleaner, Sammy what are your thoughts, dates you can make and RH.
Well, I went to read my full ct result and the onc did say did I really want to read it so I did and of course, now wish I hadn’t!!! There is solid tumour around my main bronchus and right branch, tumour around my aorta - that scared me incase it suddenly eats through it - but he said that is extremely rare and not to worry. Generally, the lymphangitis is much worse across my right side of chest. However, the one under my arm is only 2 cm from 1cm and the liver one is unchanged so that was more positive and also my bone ones haven’t changed.
BUT he hasn’t he referred me to the Marsden yet. I don’t know if it hasn’t been done as he is away or because he doesn’t really want me to go for it so will chase that tomorrow.
Got MRI booked for 20th nov so not too long for that but dread to think how long the result will take to come back. Neurology run on totally different time scales than oncology!!!
Went to the ‘farewell to clinic party’ - no wonder we have no money as a PCT!!! Mainly, retired old dears plus a few managers and us 4 underlings. Food was ok but quiche was watery and apparently still frozen for some people. So if I’m ill tomorrow, I’m phoning environmental health!!!
They had 6 lots of 5 helium balloons tied to a weight so I thought I would ask if I could take some home. You would of thought I was asking for the crown jewels - ‘we paid good money for the weights’ - they were happy for me to take the balloons but not the weights. I thought we’d bought ours at the wedding for about 75p sowodered what they were on about!!!We sneaked out with them after promising we would send them back or face the conequences!!! When we got in the car, we found the price of each weight cost £1.50!!! You should have seen how much food was thrown away -they weren’t bothered about that or how much undercooked cake there was left!!!
oh well, see you on 18th then!!!
Kate
Hey claire, so sorry about ur grandad its that time of year when people seem to leave us…My gramps went in with my nan and yes it was tough but i liked knowing they were finally back together as he kind of gave up after she died. It the anniversary of my gramps dying next week and yest was the anniversary of my dads death - tough month!
Hope all goes well with braca2 and i agree with debs hope its neg.
Sammy - u go for it girl nothing wrong with being a train driver - perhaps u could have a go in one of those high speed japanese things - how cool would that be. If u need a chat just pick up the fone, or im sure we could sort something to meet in london for a beer or 6!!!
Lynni defo up for that just name the date
Kate so sorry about ur ct results. But i would have done the same and wanted to know too, what is that??? Why do we need to no. Hows hubby taking it?? and how r u feeling???
Debs u r not a crap mum…
Have fun next week girls, wish i could be there have a drink for me and sammy. Wont be online for couple of weeks now so anything major text me - altho not too sure ill have fone signal where im going!!! Am so excited i could wet myself and got mail from graham yest - severe weather warning gusts of up to 100mph!!! Snowing hard - bring it on… Promise not to try anything too dangerous (kite buggying not included - can u imagime how great that will be in that wind i mite make it across to america!!!)xxxxxxxxxx
Trace I am probably too late but have loads of fun, we need you to sort our next re-union, can just imagine us all on an adrenaline ride of a life time. I think your holidays are so fantastic. Watch that wind been to scotland plenty of times and its vicious.
Kate not sure what to say, I am not medically trained, I know some is good (unchanged) and some is worse, so why does he not refer you, don’t you and the onc’s at the marsden have any say in your treatment. If he is not going to refer why doesn’t he just say it straight and give his reasons, am getting anoyed at him p*ssing you around.
whats the meet up time for sunday and kate are you OK for travelling virgin trains, wont they upgrade you to 1st class?? and lynn did I read right, are you getting the train, or will you turn up with one of your metropolitan chauffers. it will be good to catch up with both.
Sammy hope you are OK, is the RH problem the same one as ealier in the year, remember conversations with Moira the first time we all met in reading. and talking of Moira I was watching a programme the other night on channel 4 and this journalist popped up on screen looking just like her, it was really quite freaky (in a good way) Okh had never met her but he wondered why I neally spat my wine out and went speechless, it was one of those best of programmes.
off to bed, earlyish night, putting next bit in caps as very important, ONE MONTH TODAY I SHOULD HAVE 2 BOOBS. and p.s. got phone call tonight, son has been asked to play/tryout for one of the main county teams tomorrow night, bless him he is so excited, fingers crossed.
After texting you all - except Trace as I was imagining her skiboarding or kite surfing or upto something far more exciting than looking at txt msgs and probably has no reception anyway - I’ve been asleep for 2 hours despite taking a cocktail of drugs that usually get me to sleep - I/ve woken up and can’t get back to sleep - really frustrating!!!
Noticed that cellulitis has now crept past the pen line, hubby drew earlier but now can’t be bothered to phone anyone cos they’ll just say ‘wait for 24 hrs to see if antibiotics work’. If worse in morning, I will ask to see the GP who has had a lot of oncology experience to get his advice as I trust him - i don’t want to be landed with the locum again like what happened with my toe in oct.
I can’t believe since the 15th october, I’ve had 2 separate chest infections, cellulitis on my toe, gastoenteritis, manky toe,so had 3 weeks of antibiotics before the course I’m starting now. I know my wbc count was low last week and I’d been off chemo 5 weeks then so what with having low protein, calcium and ALT levels, i feel my body is saying it can’t cope anymore which is why i’ve gone into morbid mode.
Didn’t watch the mummy diaries but do have a copy on tape to watch. Have ordered stuff off Winston’s Wish but expect they’ve been inundated so don’t know when I’'ll get that but desparately feel i need to get a move on with that sort of memory stuff - my brain can cope now with that as can feel i’m on a downward slope but don’t want to start chemo here until heard from marsden but all the time i’m waiting my breathing is getting wors and if i don’t start something soon, it will be too late and that wasn’t my intention.
Will phone PALS tomorrow re advocacy and how to progress with a complaint about the delay in my referral. I am going to put in request for a copy of my GP records from when I first asked to be referred about my lump and when I was diagnosed as I do want to report that GP to the GMC. After reading on another thread here about someone suing the health authority about delay in referring, I’m now in the mood to get something done. I doubt as my cancer is so aggressive I would fit into the being able to sue as my outcome/life expectation would only have been a little better - i just don’t want her to get away with it.
Can’t believe I’m not sleepy - had a lorazepam about 45 mins ago and on top of what I’ve taken tonight I really should be out for the count.
Probably read this tomorrow and will see what a load of twaddle I’ve written!!!
Hope to see you on sunday - can’t see why I shouldn’t be there but aimimg to get there about 1pm - can’t see I can get there earlier than that or it will spoil the time I’ve got away from the children.
Kate
Didn’t really do any of those things on the ‘to do’ list above. I did see the GP who felt I should wait a week and then the cellulitis should be gone. My blood tests are better with a wbc of 5.6 and 4 neutrophils and a Hb of 118 so huge improvement. I spoke to the hospice nurse who had spoken to the palliative care red who felt I shuld have been admitted for IV antibiotics considering how many antibiotics I’d had recently. Will phone chemo clinic tomorrow as no letter still been sent to marsden. The secretary is obviously fed up with me as she said she would phone me when she got to the letter but it was a huge dictaphone tape the cons had given her and the workmaen were too noisy yesterday for her to do it - strange that cos I’d been told the lettters went out of the country to be typed!!
Sent an SOS message to 3 friends this morning as felt so low and needed stuff doing outside of the house so they all responded and then we all went out for lunch so I was forced to get dressed as I had no intention this morning of spending energy on dressing. this morning.
Arm looks better especially below elbow but still bad above but less red. Toe looks really awful but have got a cancellation appt tomorrow at specialist clinic so see what they can do - it looks awful- I can’t imagine anything but big surgery will make it better.
Getting nowhere with trying to get new lymphoedema sleeve - but that’s academic at the mo as been told can’t do compression bandaging or wear sleeve as might make the infection spread more. I know when we measured it we made the finger lengths smaller so why they all too long and too tight is beyond me but hey- they got my name right this time!!!
We had to check the guinea pigs this evening as they appeared to be trying to mate and they are supposed to be 2 girls. They appear only to have girly bits so obviously their hormones are rushing around - do guinea pigs enter puberty at 12 weeks???
Debs - really pleased for your son - what a lovely thing to be asked to do. Hold onto that htought in less than a month 2 boobs!!!
Sam - sorry our conversation didn’t run to plan - am busy in morning but am around all afternoon if ou want to natter.
Lynn and Claire - where are you?
Trace - think I know roughly where you are but as lost track of time you could be in Timbucktoo by now!!
will stop rambling onto myself now since no-one else is contributing!!
Hope all well
Kate
dont worry your not nattering away to yourself, did you get clare’s e.mail with the photos from your wedding vows, aren’t they fab.
The rest are a bit quiet, are you Lynn and Claire all OK for Sunday.
Son got on well at football, it was 2 county rep teams, 4 were picked from their football school, it was a shame the other team scored 4 in the first half then we had a change of goalies and it ended 5/1 final score, so second half a very good even match. they had to go off to the changing rooms to get changed and afterwards had a feast of hotdogs and chips in the clubhouse, how very professional. he loved it and played really good, didn’t look out of his depth playing at that level or make any mistakes. he can be quiet a level headed little boy when it suits him.
Sammy how are you, do you still have your christmas fair this sunday and how are things at home??
I am typing in between I’m a celebrity, have just voted for Lynn to do the live task, I dont think I like her, oh how I love tacky TV.
Well yesterday was a much better day. The redness is disappearing and I feel less unwell today - good job as i’m going chistmas shopping with my sister-in-law. Good job she is 30 weeks pregnant so we both can go at snails’ pace!! My arm is very itchy though.
Have taped Mummies Diaries and will watch them when I have a time slot on my own.
Thank you to whoever it was who sent me the wonderful gift - I’m assuning it’s come from the gobby gang as the words sound more like you than from my family or local friends. I feel it has come from someone in that hated word and world of the ‘bc community’ rather than other friends so it’s made me laugh which is always good!!
I phoned chemo clinic yesterday so know letter has been dictated to the marsden but now got to wait till she gets to that part of the dictaphone to type mine. She has promised to phone me and the chemo clinic reinforced that again!!
Saw the dr at the chiropodist clinic and they are going to remove big slices off both sides of both big toes so will be left with strip in middle!!! They are saying it#s not that painful to have doen - I’m not convinced about that but there again, it’s been so painful at times over the last year that it must be worth it… Won’t get appt for anpother couple of weeks though. The student couldn’t believe how dry my feet were - but they have improved greatly since stopping xeloda.
Claire - thanks for the photos - they are lovely.
I will bring photos on sunday. I will get there about 1pm so meet you where Debs and Claire and Lynn? - in that pub or the coffee shop. Will have mobile and will remember to have it fully charged this time.
Kids off to grandparents tomorrow at 2pm so can have rest before going out in evening and hopefully we are eating in so can go to bed early rather than stayiong up with my oh’s friends who are lovely and I get on really well withem them but just want to make sure I am OK for sunday. I might even find out which one of them it was who opened and drank a quarter of my Special Reserve Port!!!
See somoe of you sunday
katexx
Im still up for sunday let me know where and when.
Ive got to get a lift cause i can hardly walk at moment still no date for op but its going to be very soon! Sorry been quiet im just trying to get everything sorted for op cause its gonna be a biggy. Im gonna be at Stanmore Hospital in Harrow.
Ive got no computer at home either so cant get on here alot! Kitchen and bathroom near there! Thank god!
It was good to see Claire, Debs and Lynn on sunday even if I was a very tearful, depressed wotsit - thank you for listening to me.
Lynn - I really hope they get on with that op asap - I was really shocked at how much pain you were in and the hospital’s pathetic attitude to you. Glad you got the oromorph ,last night and hope it worked and you managed to get some sleep.
How’s the hangover Debs!!! I asked Claire to ring you as i thought at the time you were due in I would be just getting into an area where there was no reception so glad she did or where would you have ended up then!!!
Sam and Trace - missed you and hope you are all OK…
Found out it was my sister that sent me the ‘big hug’ balloon and chocs so at least i could thank her.
chiropody just phoned and now got an appointmnt on friday to get toenails ablated partially so at least I didn’t have to wait long for that.
No news on marsden and tried to phone trials co0ordinator but off till tomorrow so if have time will try then but got MRI scan at 1045am.
Hubby just made some soup and then off to bed - district nurse not turned up yet and it’s noon so not impressed as had things to do or would have gone to sleep this morning instead.
When are we meeting up again?
Kate
I stupidily fell aslepp on the train, luckily man oposite woke me up when we pulled into my station, (must have looked so classy and in my new coat) and guess what it was really snowing here, was going to walk home but had to call OKH as the weather was awful.
Lynn I too was shocked at how much pain you were in, didn’t realise either how big op is going to be, hope you get date urgent, kate glad to see you had some movement back. Claire you are a wonderful host.
We know Trace is holidaying but Sammy where are you???
Sounds like uv all been busy, have sent a group hotmail so i didnt have to type and retype…so u can catch up with my antics on there…foot not improveing - was a week today i decided to throw myself down a mountain, think i may go get an xray soon…but to be honest havent given it much of a chance to improve…
Hope u all had a good meet up, sounds like it was good and sad, sorry to hear ur in so much pain lyn and kate i just dont know what to say my darling…u r so brave and strong i think ur amazing…i didnt watch the diaries but i did think of u when i saw them advertised, not an easy thing to watch i wouldnt have thought. Lyn text me and ill come and visit…
Debs sounds good about son, u must be sooo0o proud of him, what a lovely thing. Fingers crossed for the boobs, mine wont stop itching but nothing there what is that all about???Claire what u up to, and sammy hope u ok…How is rubbish H???
So sorry to have missed u all, any plans to meet again this side of xmas???
no but i have her home number… dont really want to call that but the nurse said ‘she will be really pleased to see you tomorrow’ so will phone to check its still ok and then just barrel off down to s’oton as soon as i get childcare sorted. visiting is from 3-8, plan to get there 4 ish if I can and will pass on anything as soon as poss. anyone heard from lynne?
Just seen on facebook that ur having ur op next tues is that right??? What ward etc…and will try and get there. What a lot we are with u and kate and i was meant to get to a and e for xray of ankle today but couldnt leave work so have walked on it more and made it even fatter!!! Goin at 7 am before work tomo - bet i leave with a plaster cast!!! Then it will be 3, when is debs hosp date??? The only ones that seem to keep them selves out of trouble are sammy and claire!!!
Thanks for texts yest sammy, c u soon.xxxxxxxxxxxxxxx
Not fractured just a severe sprain, yay!!! Got some tendon and ligament damage and prob gonna take up to 6 months to heal - just in time to go back and do it again!!!
Have a good weekend girlies or as good as u can…xxx
Blimey Trace, you dont do things in half measures, 6 months to heal and hobbling through out the party season. very glam.
Kate rang me last night, we had a good old chat, she is feeling better and hopefully home tuesday, I told her to make the most of being waited on and the antibiotics are at last doing their job as even the manky toe is improving. She sounded in quite good spirits.
Good luck Lynn, hope that bed is available for you tomorrow, will also send text as not sure if uou can get logged on at the moment.
Read an interseting article in the paper today - guess what county spends the least on their cancer patients - yes - Oxfordshire, however they also failed to note that we are also the most underfunded, they never cover the whole issue. lets hope my op doesn’t get canx again.
really busy week this week, got my big show (east london design show) this week but not as bust as some…(shoreditch town hall fri sat sun it anyones interested!!!) but wanted to come on line to say good luck darling lyyne (what hozzy is she at i forgot can someone remind me) and sounds like kate is doing better, hurray, glad the ankle is not broken trace.
Lilltle H was pukey this weekend, nothing as sad a a pukey baby but cant believe how quick they recover. Can only wish that some of that will go the way of the GG
Any news on Kate??? Lyn is in stanmore orthopedic cant remeber ward or bed number but think i still have text if u want me to forward it let me no as dont really want to put details on here.xxx