well we are a very sad family as the very sadest thing has happened, although it has been expected for a few days, we are all devasted. So please spare a thought for the little one today for me and mine.
I won't write in more detail as I don't think it is appropiate.
love to you all from a very sad sam xxxx
Had echo - told only a little fluid there so will wait and see what the onc wants to do tomorrow if anything. Seeing the GP after the yougest's school play as feel getting chest infection. Feel fluey but no temperature but then steroids, paracetamol and diclofenac are going to stop temperatures going up anyway I would havr thought.
Let you know tomorrow
I removed my comments as felt it wasnt my story.
`will need all your best wishes thro. Whats the saying- when you cant hope for the best, you hope for the courage to cope instead.
are you ok kate? how did the echo go or is it tomorrow I've lost track
Just wanted to check in and say hi. I have a rotten cold too, not being helped by the night shifts!!
Kate hope ur cold goes soon, sammy am praying for the little one, lyn thanks for text, debs hows the job??? Claire hope u ok.
Lots of love. x
also got txt from our fit brit so glad she replied.
I've got a cold and just hoping it won't go to my chest - really scared it will and end up in hospital again. Am sleeping upright and using my pressure relief pad. Keep you posted.
Sam - good to get text yesterday after your last post.
Well, I phoned the echo dept this morning and neither them or my oncs secretary knew anything about his request for me to have urgent ultrasound. Then his secretary said the onc would be phonng me but still heard nothing. I knew the secretary had been chasing him all day and he was supposed to phone me but didn't. Not going to worry about it over the weekend and so OH is being a wonderful OH as he doesn't want m o strain my heart.
Pain in chest/shoulder is better today so he thought it was probable muscle strain so it is lookimg that way.
I've now succombed to this cold bug that the rest of the household had so am worried about it spreading to my chest again. Been awake since 430am as couldn't settle back to sleep but am going to go now. Must have slept on my bum again last night for 6 hours without moving so bum looking sore again which was another reason why i woke up as I had to denumb my bum.
Twins at christmas scout camp but staying in the lodge this time which is good as been raining all night and daughter still has bad cold. Got youngest to ourselves until 230pm on sunday and then we can decorate the tree and make the place look christmassy.
Sending you a big hug and really sorry to hear you are in so much pain, I hope it eases very soon. Take care 🙂
Put all/most of this on secondary forum but have copied and pasted it here anyway.
Sam - as you say everyday that your sis in law can hold onto the baby the more mature it should be when it enters this world.
Started off badly this morning as transport didn't turn up! It should have clicked it wasn't going to be my day but ever the orptimist....
So they had to send a taxi which arrived at 11am and was better really as had put together a basket of fruit, nuts etc for the chemo staff and I wasn't crushed in the back of an ambulance car.
The taxi man was lovely and could see i was in pain so wheeled me really slowly down to the ward end as had bed booked. As we passed the waiting room, the chemo receptionist was outside and took my appointment card to book me in. By this time I was in agony from my back and shoulder and I was thinking in a minute I can lie down and I'll feel better.
However, at the ward reception, the sister told me that no bed had been booked for me so I just burst into tears so she put me in the ward waiting room which at least had a supportive high back chair and got me a pillow to help me rest my back and I took 20mg of oromorph. I had already taken 80mg MST at 8am plus diclofenac and paracetamol.
The sister couldn't find me a recliner chair for at least an hour so I just had to sit and wait. It was so frustrating as I knew the onc would order xrays and it seemed so stupid to wait to see him and then get an xray and go back to see him again but the NHS doesn't work like that does it!!
Then the research nurse arrived with my notes after about 45mins and it was then that I found out I wasn't on the clinic list either so I don't know what had happened to why I got booted off the system. At least the oromorph was working and the research nurse spent a long time with me which was lovely and made me feel someone cared. Then my mum arrived!!!
I just felt like throwing my nuts and fruit around the whole place I was so angry and unhappy and I knew the receptionist had sorted it all out last week but there was no eveidence and the transport booking forms are just filed in a ring bonder with no number checker so could have been taken out.
At just after noon, I got a recliner chair so could lie down on my side and rest better. I saw the onc at 115pm who of course ordered xrays and examined me and thought I had new bony mets in my ribs. He really hurt me as he was listening and tapping my chest but he said my chest sounded clear and I had no obvious sign of cord compression. He also thought I may have strained muscles as I am so weak but can't think of anything I've done that is remotely strenuous.
The onc came to see me about 4pm to say he couldn't see any new bony spread but to me that means nothing as in 2006 my massive hip/pelvis one didn't show but he could see my heart had significantly enlarged and thought it was more likely that I've got fluid around my heart than heart failure due to herceptin damage as I've got no other signs of heart failure.
So now waiting for emergency echo and fluid drainage from my heart. Not sure how they will do this as far as I'm aware ther is so much solid tumour around my heart anyway. He still gave me the herceptin though as we felt it was worth the risk.
My chemo didn't start till 445pm so didn't finish until 615pm and got home at 645pm.
Absolutely exhausted and still in immense pain with no apparent cause and as had dex at 5pm don't feel like sleeping and don't feel like doing anything remotely constructive.
kate bless you for mentioning my cold with all you have to contend with!!! Hope you get some answers and sort your shoulder out. I was hoping you would at least have a quiet few weeks till xmas
Debs what a p*sser
Sounds good ..... I am sure there are a lot of things people want to say about Christmas. It always seemed such a magical time when we are children and maybe thats what makes it worse when as an adult awful things happen around that time.
Hi Kate and everyone
We know from previous years on the forums that Christmas can be a difficult time. Last year we opened up a special category for people to talk about Christmas - both the positive and the difficulties. We were going to do this again this year in a few days but I can do it straight away if you want.
Just let me know
It's all such crap news at the moment. The secondary forum is really bad - people I've met in real life or live chat- so depressing. Really worried about our friend. Scared for me tomorrow as think either one of my vertebrae has collapsed or a rib is broken or my shoulder blade has cracked - in so much pain. Last week it was my hip but since having the zometa after a 7 week break my hip is fine but this pain is something else and the lack of mobility in my shoulder is scaring me too/
debs - you hear about this sort of money going missing but you never think it will happen to you. Hope the legal insurance helps you and as you say keep calm.
No idea how you break christmas bad luck - just know as a child christmas was always great but as an adult found that for many there is a lot of sadness involved in christmas. Iit wasn't till we had the children that christmas became fun again for us. There's so much pressure on us to enjoy christmas and it often turns out to be so stressful. Hopefully, our children will all have a good time and those withoout children can have the freedom to do what they want to do and not what their families are pushing them to do. OH and me had a wondeful blisssfully happy christmas one year without the children and it will alsways be one of our most cherished times we've spent together.
Sam - pleased your chest xray was clear - people seem to report that their immune systems are never as good after chemo. Hope all goes well for your sis-in-law - how worrying. Pleased your sale went well.
To you all - miss you and love to you all.
doom and gloom here, OKH had telephone call friday, one of his oldest best mates found dead in his home at age 43, they think maybe heart attack but waiting path report. and me and sis should have got thrift thru her work and guess what??? the money has gone missing, we had Â£1500.00 between us. her work are currently looking into legal as paid thru wages and they are trying to state nothing to do with them but woman in charge worked there for over 30 yrs and retired this year. Flaming f__cking hell. yhis is now 4th bad december in a row. how the hell can we brake the frigging curse. luckily i get free legal thru work so ringing tomorrow, have told sis not to sign over anything at her work.
kids are upset again, we've told them not to worry, this christmas will be good and trouble free
Love you all, at the mo just trying to stay calm,
been very busy as open studio thinhgy and other sale last week, but went really well despite all the doom and gloom.
Chest x ray was clear as we all thought but have ANOTHER chesty cold -4 th this winter!! so glad I had it done as would worry other wise
Trace take care my dear xx
debs hope you are ok too another friend has just been made redundant scary times
love to claire and our poorly still fit to us brit
After my horrible day at chemo last week- think I just blogged it or put it on the taxol thread on secondary forum rather than on here - where I did get my zometa. I last had it on 23rd Oct and my bone pain had been increasing dramatically since. It's Ok for one consultant to say that zometa stays in the bones for months but I'm not usual am I?? My chief onc gave me the zometa and my bone pain has been better since thursday apart from tonight but I think I've been bending over too much trying to put words to my life story album. Twin son does an amazing back masaage which has helped enormously as I thinnk the nerves get trapped and my back gets spasms but he has managed to unknot a lot of that so feels better now.
Mum here now so she will come with me to chemo this week and my childminder next week. Also got bed booked for next 2 weeks so that should help.
OH slid in the ice yesterday and came off the road after a 180 degree spin into a tree with youngest son in car. Eventually got pulled out by an off roader and it was still driveable but gave them all a shock. It was in the morris minor as well so OH gutted. It's fixable but a shame.
Pressure sore improving so pleased but is hard work to keep off bum. Problem is I often fall asleep when I'm sitting up and so slide down bed. Managed to get one of my personal care days into a housework hour so that should help me more.
Kids all full of colds so trying to avoid them - poor things.
Any news anyone?
Done most of my christmas cards and waiting for lots of stuff i ordered off the internet so now It's hoping the parcels will arrive when I'm in.as queuing at the post office is a nightmare.
Hope all well.
No we didn't pay extra for car insurance,think this may be because it was a disability car and they pay the insurance for it,though we did inform them.
The house insurance didn't rise aslong as we didn't have any smoking in the house and that it wasn't in the kitchen,though they can put the main cylinder in an out house if need be.The concentrator delivery man put us 3 tubes through out the house one into the bedroom one along into the front room and then one to go out back he fitted them along the side of the rooms so that all OH had to do was swap tubes over,it did work quite well .Thankfully we no longer need them as he had a transplant 5yrs ago,though think they may have to return as he has now been DX with fibrosis but he has had a good quality of life for them yrs.
I hope you stay reasonably well and you and your family enjoy Christmas xxxxxxxx
Thanks for yur reply.
I've been trying to look ionto the liquid oxygen side but was told that an ambulances and taxis won't carry me with liquid oxygen. The firm supplying my oxygen would only give me liquid or portable and I would like to have a spare portable cylinder incase they won't take me but apparently it is one or the other. I have a conserver on the portable cylinder so it lasts a long time as only pumps out the oxygen when I breathe in and alarms if I don't breathe through my nose.
I have a home concentrator already but only 1 downstairs so it means trailing the tubes round the house upstairs and down!!!
Does having liquid oxygen effect your house insurance and car insurance? Have you had problems with taxis, ambulances, restaurants, public places, shops etc? I need to look inot this more as it would be easier.
Saying that now I've restarted chemo I'm hardly using oxygen at all so it's not an urgent problem but something I need to follow up as have not get much chemo left and on last option unless I can persuade onc to continue with taxol or switch to vineralbine.
Thanks for your help.
Hi Kate.I've never posted here as i'm not that bloody young or that bloody old for that matter lol.I've just been reading your blog which i do on a regular basis and must say you are 1 amazing lady.Anyway was reading about you being on oxygen and having the cylinders,and wondered if you had looked into a oxygen concentrator which runs off the mains or even liquid oxygen,which you can fill up your own carrier pack,they are alot lighter than the cylinders and last longer to.My OH has had both and it made life so much easier,the concentrator had a tube which he could move around the house with so was able to carry on with a certain amount of ease without carrying a cylinder with him he could walk into the garden with it.The liquid one wewould fill every morning from a large cylinder then someone would come once every two weeks to fill.I do think these are a bit of a post code lottery as to whether you can have them but i'm sure it would make for a bit easier lifestyle.Hope you don't mind me posting and I wish you and your family a nice Christmas xxx
Just thought id let u no had yearly scans today and all is well no recurrence, that at least is something to be pleased about!! Oh, and they offered me a job as they are starting to do paeds again, as if i would want to work where i had all my treatment!!
The only other news is i have finally booked my trip to the himalayas and f**k the credit crunch!!! I go on 14th oct next year for 4 weeks.....i had to do something to make life seem worth it and this is it! The one thing i have always wanted to do and i am finally doing it, got so emotional i burst into tears on the phone to the guy i booked with!!!
lots of love xx
OKH just got offered a spurs V man utd ticket for 13th, have told him to take the offer for his birthday seeing as came down to S to visit the other week and just the 2 of us, looks like we need a new date, when Lynn is up to posting perhaps better to arrange around then???
Anyone heard back from the fittest of brits?
debs - think it is only you and me can make the 13th. Will email you all.
Have been feeling really unwell since sunday night. I don't know how I managed to shop for so long. I spent yesterday in bed. I think I've had a mild stomach bug as kept feeling sick and the the trots big time and also really achey and fluey but nno temperature. Today is the first day I've felt well since last last week.
As I've spent so long in bed I've developed a pressure sore on my bum. i told the district nurse last week but they didn't get me anything to sit on so now it's all systems go. It's not broken down - my skin's purple and it's painful and I have to lay on my side.
haven't heard back from Lynn, still to text Trace but dont know what shift she is on.
work not looking good, loads and loads of rumours and our dept seems to be getting wound down, luckily sent my CV over to other dept and the big boss who was chasing me came up to me today and said I would be getting a call next week, really do enjoy where I am and actually do like majority of the poeple (quite a few of us all started together 15 years ago and all seen each other married + kids), its pretty crap in this area at the mo, lots of big companys shedding jobs and forcing 4 week christmas shut downs, and this is manual skilled and office, really dont want to start discussing medical issues (plus have a very good life insurance thru pension + generous sick scheme + hols as stuck with the old contract, we lost OKH's when his place shut so want to keep hold of this one).
other than that no news really and am not loosing sleep over it as there is nothing I can do about it. thats one thing I have learnt the last couple of years. plus I would come out with over a years salary + shares etc so that helps.
Oh and by the way only 11 days away from 3yr anniv (although officialy it should have been 18th Oct) blimey cant beleive how quick it has come round, honestly honestly thought I wouldn't be here, this is my first christmas with no stiches, drains or chemo ward since diagnoses, this time last year getting ready for recon + can make this years work do, thats a first since 2003 (as dec 2004 we lost OKH mum) so fingers and all else crossed this one will go well.
Had daughters 1st report at big school, very very good, she is on target for all grades and achieved O - outstanding in near enough everything else which breaks down to home work, organisation, behaviour & class work. also had a gold letter for 100% atten and time keeping so well on the way for 1st reward day in January and incident sheet i.e. detentions, final verbal warnings etc = blank so well chuffed. so took her to local and we had lunch with her best mate and her mum.
so much for no news, must go and get some beauty sleep, love to you all.
Over did it I think yesterday. Spent a lot of the day shopping but in my mobility scooter and then spent afternoon in bed and then early part of evening and just couldn't wake up and seemed to be hallucinating from what the children said.
Stayed home today instead of going to hospice and spent afternoon in bed and keep falling asleep this evening. Not sure if it's cos I've stopped steroids till thursday but thought I'd overdone it with the laxatives but think it's a bug as feel fluey but no temperature.
Any news then anybody?
I texted fit brit this am and got no reply. Shame we don't have her home address, Might contact her friend in morning but reluctant to really.
Think we need to knock 13th on head as seems only me and Debs could make it but there again it might be better if only 2 go there and have full meeet up in january.
Trace - let yourself recover amd take care of yourself. You've had a helluva 2 yeras and it catches you up. We'e here if you want to natter. Wished you lived this sideof London as would be so much easier to meet up with you. Not even sure if going to sisters at all or else could get someone to give me a lift your way.
Sam - hope the sales go well and you don't have too long to wait now for result.
Debs - is work stable? What did you do?
I'm amazed by what I can do but do need help with strangest of things and am so glad that i get the personal care side of things as that would exhaust me and take a few hours to recover so just bite te bullet and let her wash and dry me and get me brekkie. Just am bad in mornings = can't get going at all.
Onc stopped the zometa - bone strengthener as he said it stays in your body many months so had last one mid october. Pain and stiffness worsening and in new places so will push on thursday for review and see if can restart it.
nearly asleep npw so hope it makes sense.
Sammy and debs i agree with scans/x rays im sure ud have heard so think its safe to assume no news is good news.
Havent heard from lynnie either - hope all ok.
Have been struggling again quite a bit recently, keep breaking down in floods of tears (at home and work) and just feel like i am completely cracking up. I dont seem to have any control over anything and think i am losing my grip. Have so much going on what with me (scans next week, and still suffering from rads burn under boob but refuse to wear maternity bras forever! so am battling on with the underwire..) and mum being unwell (thought she may have had lung cancer, then heart problem and now they just arent sure). My sister keeps having funny dizzy spells too and now has to see a neurologist as they worried it may be something more as my dad died of a brain aneurysm. What with all that and my 2 closest friends mums now being for palliative care and worrying about u guys and just trying to keep life on track with work and paying bills etc i just dont feel i can keep going.... I dont even get out of bed on my days off. Have been keeping it quiet for a while and trying to just get on with it but dont feel i can anymore as its all got too overwhelming. G is being great and RF is trying to understand but is finding it hard, especially when i dont feel like going out and keep cancelling arrangements!
Have seen doc twice and have now started anti depressants (didnt really want to take them but doc didnt feel i would improve without them - she feels they will help support me through this 'mini breakdown'). Wouldnt have called it a breakdown but maybe it is, who knows, just feel like a bit of a fraud when i think of what u guys are going through and are so strong and just get on with it, cant complain really can i...
Wanted to put u in the loop in case im not on here for a while.
Sending u all lots of love xxx
not heard any news either, will send a text.
I would rather meet up when we have full gang.
Sam agree on your reckoning re x.ray, i haven't heard back officialy re my ovary scan and nothing on bloods so am just happily presuming all OK. Hope you sell loads.
Things busy here, sorting christmas pressies and having to wrap immediatley due to my 2 being far more aware of my hiding places. crafty little buggers. have warned them it will be a very boring christmas if they go seeking. other than very fed up with tamoxifen and my hips all ok here.
Love to you all Debs XXXXXXX
HI Kate and everyone
wow- what a recovery! sounds like you are on top form organising everything. Cant believe your breathing is that much better.
Have heard nought from fitbrit 😞
Dont think I can do the 13- busy time of year trying to flog stuff
Havent heard about my chest xray - so thinking it is good news as they have told me previously that they get in touch quicker if it is bad news!
take care all
what a busy friday!!!!
had the carer here to help me get washed etc. It really is such a huge help. Then had a friend here who did some housework before we could sit and drink coffee and natter. Then an OT from social services about a stair lift. Then some more friends and another OT from the hospice to do the raising bath seat. Then hubby returned with youngest son after hospital appointment. It was then lunch time and felt absolutely exhausted. We had planned to go out but was too tired.
hardly using oxygen at all now so pleased and actually had a lie in today which helped although son had woken me up at 8am to say he didn't feel well enough to go to football. i fell back to sleep when I was texting son's friend to say he wasn't going so she turned up anyway and I felt really bad. Spent a lot of day on feet so bum feels better. Cooked with the kids and played nintendo games so obviously much better. Still came to bed at 830pm and just lounging around.
Anyone heard from the unfit fit brit and what are we doing about meeting up?
Hope evryone is OK/
Not sure where we're going now with meeting up? perhaps we'd better have a quick show of hands/texts/emails?
Had such a long day at chemo today. Hopsital transport was late. I phoned the chemo desk and was told ambulance control had told reception they would be late but neverthought of phoning me so i arrived at 11am for my 1030am appointment and my notes weren't there. I got a treatment recliner chair anyway so that really helped and the same consultant I saw last week saw me and we just agreed to continue on as before so i had my taxol and was finished by 4pm which was when my transport was booked but it didn;t turn up till 530pm. Fell asleep as I was reading to youngest and then again when talking to son. I think I was only awake for my daughter. Then I woke up again and now ut's 1130pm and not tired!!!
No other news really.
Just a quickie, not gonna be able to make the 13th after all as family are still coming. Think its prob best if you guys arrange something between urselves and ill catch up with you all in the new year.
oh lynny poor you, that sounds awful, i hope there is something they can do to make you more comfy and to sort it out. Kate thanks for the post will text lyn later.
lots of love x
OOOH Lynny Lynn, have just read Kates post to OKH, latest news is again so crap and upsetting, he sends his love to you too, just want to come up that M40 and give the fittest of brits a big big cuddle. if up to a visit give me a shout and I'll be straight up.
Love, hugs and kisses
Got a text from our fit brit. Doesn't sound too great. She doesn't have any blood clots in her legs but she said her legs are completely swollen up and leaking fluid so the nurses are visiting every day to dress them and she is bed bound.
Just can't imagine what she is going through so hope they can do something to make her more comfortable and mobile again.
Home now - feels like I've never been away. Washing still preoccupying me as in why can't it put away after it has dried!!! All the kids arguing - but wouldn't change it so good to be home and feel reasonably well!!
As it was mum's birthday on friday, my mum, sister, eldest niece, hubby and me went out for lunch straight from the hospice. Then came home and although mostly tidy, the amount of washing that hadn't been put away was staggering. It took an hour for the 4 of us to put it away!!!!
Yesterday, I spent some time in the house alone and it wasn't as scary as I thought it would be. Then I sat with eldest son while he made jelly, flapjacks and ginger biscuits. He's a good cake maker!!! I also managed to spend time alone with daughter and younger son so trying to make sure I always spend a bit of quality time with each now every day instead of it being a bit ad hoc.
Woke up saturday morning with a sore bum. I'd fallen asleep sitting up and must have slept all night in one position. I can see how pressure sores happen so quick - my skin is so poor due to the steroids. Did sleep on my side last night so better today.
Breathing really improved. Went out this morning on a Santa Special Steam trip organised through hubby's work. Didn't use any oxygen until we went to the cafe so that was for about 4 hours off so pleased.
Still concerned about my swallowing as had an egg bap when out and can feel it sticking on the way down. Have to hope this batch of taxol shrinks it back.
Just texted fit brit so will let you know if hear anything.
Hope we can all meet up or if not will have to meet in shifts!!!
Thats great kate and am sure it was cos of the cakes u felt sick!!!
still unsure whether family coming down (or is it up) from wales that sat (13th) as aunt has broke her ankle in 3 places and has it pinned and plated so gotta wait for her to see cons to find out what happening before we find out if they are able to make it so will have to keep you all posted. Thanks debs for thinking of me when fitting in dates but honestly if there is a date you can all definately do then go for it as not sure when im gonna be able to let you no......but promise as soon as i no anything u guys will be first to know. xx
Well done Kate - fantastic you were allowed chemo - really cant beleive it especially after seeing you the other friday - your recovery and appetite must be legendary.
Go for it girl
anymore news on our fit brit anyone ????
I did go to chemo and I did have the taxol and herceptin but not the zometa. I didn't see the chief onc but the other one that I also like. He is one of the oncologists in charge of running trials using zometa, the bone strengthener. He felt that as zometa stays in the bones for many months, it wasn't worth me having that today so I didn't. all my blood tests normal - even my albumin and protein and well inside the bottom figure too!!!
Didn't get back to thehospice till 630pm and now feel sicj but could be to do with the chocoalte eclair and creme caramel my hubby left me and not the chemo!!.
Thinking of you all
i've got an evening do that day so could possibly meet in the day, just depends what my mum is doing to have the boys for me, (its her best friends party that evening)
If not then you guys carry on and i'll see you in the new year
I know loads to read but poor Lynn, cant efin believe latest, total crap, will send text tomorrow too,
Kate hope daughter is feeling better and sleeping. think your OH is really frightened he does really love you could tell so much at your vows, his eyes followed you everywhere and he looked so proud posing for the photos with his arm around you, Oh and tell the posh lady to FORK ORF if she gets too bossy.
13th still OK for me and christmas very good reason, Claire what are you doing this date is it day event or evening, can you fit it in either side? Trace works every other weekend and Kate and Lynn will both be struggling to travel so the rest of us need to fit around them.
must go, want to complain to aol, took me 2 hours to log on tonight, service is totally crap at the mo, must be wanting an upgrade.
Oh, poor lyn, will drop her a text...cant believe she has such bad luck.
Claire, there is nothing wrong with being in ur pjs at 11am!!!!! If im at home i shower and put them back on... 13th dec only date i can possibly do before the new year, but if others can make other times that fit in with claire thats fine ive not got a prob with that, just have to see you all in new year...
Kate am glad u doin so well
Sammy how is the sickie tummy going??
Just had text from our fit brit. Just been admitted as they think she has a blood clot in her calf. Poor thing. It's a never ending round of problems for her is it?
Just thought i'd pop on quickly, amazing how quick the days goes and how little you get done as you think you've got all day!!! especially as its nearly 11am and i'm still in my pj's!!!
anyway, glad your doign well Kate, be home before you know it!
just to say, i cant do the 13th or any saturday in december i'm afraid....its the busiest time of my social calender (ark at me!!!! not fooling anyone!!)
any other dates???
love clo x
What a day!!!! Have a very demanding, posh lady opposite me who thinks as I can walk a little bit I can do all her fetching and carrying. She does give me lots of praise in my hearing but have explained I'm not that well and can't bend, stretch, carry etc at her will!! The lady next to me has just died of bc diagnosed this year. She was the mother of someone I knew well when our children were babies and she knew how long I'd been ill for and was here when she died. It was really horrible and at the same time the posh lady was demanding that the lights be turned off. I just told her I was too wheezy to walk to the light switch - I could hardly shout out that my friend's mum was dying. I was also on live chat at the time so it was a bit of an evening.
Daughter came in and we chatted about going to sleep so hope that tonight she will sleep better. I will text her when I wake up and have turned off phone now.
Spoke to rather odd foreign palliatvie rehab reg tonight. My friend was here and he just drew the curtain around us and started to ask me health questions. I wasn't going to answer until she went but wanted to see what he would ask with her being there!! She just excused herself anyway!! Perhaps abroad that is acceptable behaviour but he didn't ask me who she was or anything!! He got my back up further by not believing me when I said I'd never smoked and then said I'd had pneumonia - I'm sure I didn't and then told me I was worrying too much when I asked about him writing my tablets up for home now to make sure they were here!!! We all have experience of pharmacy waits and I'm out in the sticks here at the hospice so the tablets would have to come via a taxi!!!
My hospice nurse came into see me tonight and we were discussing home and what I needed. Hubby won't go to get key pad lock thing. I want one so that carers /friends can get in without me having to come downstairs etc but he sees it as me giving in or having to accept that I am now really ill. We thought we might get the palliative care consultant to talk to him as I think he is unrealistic about my recovery. I havr no idea how much better I will get. I'm sure I will improve from here but I can't see me being able to do what I did before as my lung function has deterioriated and I don't think this time is fully recoverable. I'm not being pessimistic, just realistic.
Going to ask for maximum sedation tonight.
Got friend here tomorrow and will see hubby and kids later in evening. Seem to have a lot of visitors planned which is good as then I know I won't be alone too long.
Hope all going well for everyone else.
Kate good to see you have WIFI, will check out 13th - nothing on calendar yet, am sure your daughter will be better once you are home, even though they are now big school they still like their cuddles, she probably has a million thoughts running through her poor little head at the mo. when I am in my daughter always cries and clings on when leaving she also wanted to sleepover with me last time, I just made sure I called every night and every morning, asked the nurses to plug my phone into charge.
Good news on going home, fingers crossed on appt with Onc to get you back on taxol.
Now in a bay again but this time the wifi works!!! As far as I can tell 13th dec fine for me - just depends where etc to how I get there and if anyone ever trusts me to travel alone again!!!
Seeing the onc on thursday - remembered hadn't had herceptin or zaledronic acid for a while so rang the med secretary and got to talk to him myself so he is happy about the herceptin and zometa and will wait till he sees me before committing to taxol this week. They hadn't cancelled my chemo appointments so someone is supposed to be arranging hospital transport or will I have to do that myself as well??? Then home on friday. My mum is coming down then with my sister as it is her birthday so 2 reasons to celebrate!!
Social services have agreed more home care for me. Just have to see if they will also pay for that. Someone is supposed to be coming around to see if can fit a stairlift and bathlift as well.
Having huge probs with my daughter not able to sleep at night. She keeps texting me in tears saying she can't get to sleep but isn't worried about me or school or anything. Hubby getting really cross with her which is upsetting me so have now told her to ring me in the morning which seemed to help her calm down. I don't want to turn my phone off but I don't want her to be so upset either. It's really distressing.
Have to go.
Hope to see you on 13th dec