sorry to but in.
This makes me so angry I am in no where near as much pain as you kate but i do empathise with u as i have off days the same as the rest of us.
maybe we should get these so called people to take part in your routine day of chemo ans see how they like it.
All you are trying to do is make your time of life more comfortable and fulfilling without the pain and discomfort or even the annoyance of others who really don't give a damn!!!
I really hope you get somewhere and you get the treatment chair you talk about. I wouldnt wish this disease on anyone but maybe just for one day someone put themselves in your shoes and see if they can cope.
Take care you are truly and inspiration to us
Is it worth going to The Press. It will totally embarrass and shame the hospital about the appalling lack of care. Its a disgrace!
Thinking of you!
I've had a phone call from the sister of the chemo unit and she said that they will book me a treatment chair which is the recliner that I'm comfortable in each week so that is hopefully a result. However, this has been promised before and was then stopped as the nurses complained about me blocking the treatment area.
I am still going to pursue this, as although hopefully, they won't throw me out of the recliner chair again, it does not explain why there was such an unacceptable delay between the doctor ordering the chemo and it arriving at the treatment room and as I witnessed both, I know the timing is correct. It also does not help the poor lady bent double due to her collapsed spine or the elderly lady who sits in pain in a hospital wheelchair. Both of these women will not stand up for themselves and I know in some ways at this stage in my limited life, I should only act on my behalf, I can't! I'm driven to be fair and want to fight the inequality of the situation.
My son has just written a beautiful letter to the MP about 'his mummy' and 'it makes us sad when she comes home and is in too much pain to play with us and cuddle us' and 'I want to know why she has to wait so long in pain and she will die quite soon'. It bought tears to my eyes.
Thank you all for your help.
I have followed your story, blog and comments on this site since I was diagnosed in July 2007. I have found you to be truly inspirational and a great support to others. I do not post often but felt I had to today after ready your blog.
I am appaulled at the treatment you have been receiving from your local hospital and have no heisatation in emailing those you have listed.
I hope you start fo feel a little better after yesterdays problems and your pain is controlled. I can not beleive in this day and age you are being treated like this.
Please take care, love
Horrible, horrible day at chemo. Have emailed complaint to MP. chief executive of trust and complaints manager. All their email addresses and posts/names are googable so have posted my letter in my blog. Would be grateful if anyone could read my email and then either forward my email to one/all of them and add your name or something 0r ny other comment to support me.
My bum is so sore from all that sitting, my ankles swollen and i have unnecessary pain as they can not supply a suitable chair for me.
Desparetely need Moira's advice as feel they are neglecting thier duty of care to me as I surely shouldn't be expected to bring in my own pressure relieving cushion etc and they should ensure they are providing a safe environment for me which they are not as the backs of the chairs are unsuitable for my crumbled spine.
Got home at 730pm and left home at 1030am and waited over 3 and a half hours for the pharmacy to do one bag of fluid for me. Am so disillusioned and any help in the complaining department would be appreciated.
Lynn - brilliant to see you posting. Have texted you but wondering if you can read it as you say your eyesight is bad. Will try to ring you and hope I don't disturb you. Just tell me to get lost if phone at wrong time. Really hope to pop up to see you early february but may end up coming on own if you can bear that as busy quite a few weekends when others are free. Sorry to hear about the water retention - I know how my legs were in november and it was so uncmofortable and my face has been bloated and felt tight as well but nothing to the degree you're talking about. Sorry about your mum and you - know the feeling. Hope to see you really soon.
Good to see your usual feisty post - miss that from you!!!!
Everyone else - hope you're all well and that we can organise soemthing together to see Lynn but otherwise will go on own and leave it up to you all to arrange a mutual date!!!
Love to you all and seems so long since we've met.
Ooooh Lynn so good to see that u r up to posting and having a pop re circumstances, me and my mum are the exact same. is your sister peace maker.
you need to let us know what you want to do visit wise, Kate is busy trying to organise us, whats your preference.
sorry to read latest setbacks it sounds awful,
hope to see you soon, love Debs
hiya ladies typing maybe all over the place and info etc so apologies now!
hope everyone is aswell as can be. Im livivn back in the mids betweem ,y moms and dads but me and mom are really going at each other so im ar mydsds at mo saying that i stopped living ,y moms at 17 and ive just gone 32 news yers eve was well funny (thhats my bdaay too). so she been bulling me about mu meds bout the treTment p have id tell ypu more but i can hardly she the sceen im typing on! Anyway to say me and mom are going to kkill eaxh other is an understatement!
So im at dads xant see very well as my cheeks are so full of water they#re weeping down my face and are bloaded reallu bad, im nloaded everywhere my stomach is sticking out the water retention on arms and uncer my legs are well sore, my legs collpsed from under me and i broke my right ankle so my right ankle, toes r broken so walking has been a reel prob. 2 secs.......
love ya xxxxxxxx
Kate I think it is awful you are waiting in such pain
I dont have much time this week, but do you want me to do something? I am good on the phone but not so good on the computer.
I never had to wait long- this is obviously a chronic problem with s'oton, if other hospitals can do it, so can they- and if they cant do anything about the wait quickly, the least they can do is have proper chairs for you
Basically you need a chemo-suite type chair to wait in the waiting room?
Having been thinking about you this week- read your post about your daughter. I do think girls think diff from boys, and what she was very clumsely saying was they will be ok. Darling it must be so awful as i can imagine you want to hear that, but really don't at the same time.....
Trace hope things settle down-
Lynn blimey girl thats not good! was it all the raving you did on your b.day 😉
take care all
thanks for your honesty and I reallly appreciate you do not want to upset me. I haven't complained but if I don't then the system will not change which is why I'm taking my time. The nurses do want us to complain as then they may get the help they need as they will listen to patients but not them.
I have been going there from april 2005. The longest break I have ever had from that clinic was 4 weeks, I have been from every thursday to one in three thursdays so we are talking a lot of thursdays and a lt of minimum 6 hour days.
In 2006, I was told things would change and they haven't. My back is very painful now and I cannot sit on these slightly padded chairs for 5 or more hours each week as the back ends where my spine is collapsing and it hurts so much that I have to have oromorph which I very rarely useat home and diazepam to relieve the spasms that I get in my chest and back. All I really need is a high backed chair and a footstool and I'll be happy so iIwill complain as the last thing I want at present is another pressure sore and another spinal fracture so i owe it to myself and to others to complain so that I will do at some point.
The pain causes me to be stressed and this is severe bne pain and nt just being uncomfortable.
Debs - it is good to be honest and i do appreciate that but this is different situation now as I'm so ill and they should take that into account. Being at the end of your life and waiting for 6-8 hours for treatment is a totally different thing to being diagnsed with primaries and waiting for that length of time.
I will email suitable dates through etc to all and txt fit brit with them
Love to you all
I have typed this about 3 times and deleted and reworded but want to say something to above psot while trying to be very diplomatic.
The way I look on it, Fantastic news, You are back on the treatment that you were so desperate for, you were so worried that your Onc wouldn't allow you anymore chemo you were getting frightenend as your swallowing was struggling again. so my question is? does it really matter if you have to wait 5 hours for the chemo and is fretting re complaint going to change the hospital policy in the pharmacy. The answer is probably NO, if you have no control then just dont bother it will just niggle you.
I had 4 treatments in local town and 19 in chemo suite Oxford, really struggling to think when chemo arrived before me. even though I used to call in before hand, infact while having Onc, tax and herc together I would get my mum to drop me of for 9.00am and would be lucky to leave before 6.00pm, always had to wait, on one occassion was told to go of shopping, I never once put in complaint as I knew it was never malicious or intended infact a nurse would have to stay on with me as they officially finished at 5.00pm. which re-iterated not their fault and confimed they weren't too pleased with pharmacy either.
Kate what I am trying to say is sod the chemo suite, it wont change, yes its very taxing and annoying when you get there on time but its not worth wasting pecious time and energy, you now have disney paris and time with kids to focus on instead.
Texyed our fit brit. She has had some falls and broken her foot nad toes but would love to see us. Will email later.
Had 16th taxol and got the ok to fly as oxygen sats ok and got holiday insurance. Waited 5 and a half hours to start treament and so home at 7pm. Need someone tocomplainon my behalf as found PALS seems to block moves to complain formally and not help. Nurses are still so unsymapthetic.
It 230am and keep waking and sleeping so need to lie down now and sleep.
Love Kate xx
Kate, think you are on the right tracks, your kids have really been thru it the last few years and yes they must have tested and stretched every emotion over and over again, as you say you get so ill and you prepare them for the worse then you get better, also visiting cancer wards and hospices frighten me at my age never minds kids + girls are usually more in tune with whats going on (mine is) they take more in as they are always listening and watching, plus remember both of ours same age, they are at the age when their bodies are changing while their mums have breast cancer, it must be horrendous for them. Perhaps if it is now given you some piece of mind treatment wise then it was good to come out. Like you say treatment has to benefit you all, its no good if it seems to prolong suffering especially for those watching..
Just enjoy disney, let the kids run wild from ride to ride, you can catch them up in the Q, it will be a good distraction for them. and disney is the place where everyone acts like kids whatever the age.
Trace hope all gets sorted, its a shame if it doesn't, sounds like he was being a twat with everyone, perhaps he felt like he was playing gooseberry when he is used to getting your company all to himself and this is what made him jealous and act out of character?? hope slide show gets an apology and explanation so it gets resolved.
News here, OKH still hasn't heard anymore on work end of month, car is due MOT tomorrow, and start new job 26th jan, boiler seems to be working and only cost me Â£40 for the part that had to be replaced. My big main boss still isnt speaking to me since he got the call chrstmas eve that I had the job, childish ducker, his loss, everyone else in the office is coming up to tell me that will miss me. I think timing is right, hit my 3 years which wasn't originally expected, stayed in comfort zone as really didn't know what else to do at the time, just wanted life as easy as possible, so think its time for new adventure. Have also signed up for NVQ at work, did my maths and english test this week so really am going for it, however last time I was studying at work I had top marks on all my mock work then got diagnosed 1 month before final exam so that knocked that on the head. Luckily didn't accept all my Onc had to say on first visit as she actually advised me to give up work for good and make the most of my limited time with my kids!!!!!
Blimey this was supposed to be a short post, I think thats impossible from me,
Take care you lot, Debs
Thanks Debs, no still no word from G, nearly 2 weeks now and is the longest i have ever gone without contact from him!!!! Just cant work it out, i no he is still struggling with all that has gone on with his mum and wrote me the most beautiful letter which he gave me at christmas. But the way he treated me and then si and now nothing just has me baffled. It is so totally out of character. The only thing i can come up with is that he is a little jealous. Not of me and si as a couple but the fact that i had to ask si every time we made a decision about walks or climbs whereas usually i have no one to ask and no my own mind. He did make one comment when i refused to climb ben hope about not being true to my self...The only comfort i have is with the fact that the girl in the other couple who were with us had a big bust up with him earlier in the week too and the eggs they had gone out to get for breakfast became scrambled before they even got back!!!!!!! after she chucked the lot at him!!!!
Perhaps i was pinning too much on this trip and our closness was affected by there being 5 of us...who knows??? But si is my fiancee and is where i want to be so he has to accept that. Maybe it is another cry for help as he went very quiet with the last bought of depression, and perhaps as i am having the same struggles he is staying quiet. I hate all this speculation it is doing my head in and not helping and i miss my friend terribly. Have written him a little note and done a slideshow of our hol pics which i am sending tomo so am hoping to get some sort of response from him then.
Will let u no about that weekend. U may need to text and remind me.
Take care Trace. x
Debs= not heard from our friend either. Sam did just before christmas so think we need to try again.
I go through phases now with what daughter said and although I felt really hurt initially, I think she is giving me permission to give up when I want to and that they will be OK. It must be so hard as my emotions go all over the place each time I'm really ill and then recover again so goodness knows what they go through. They keep being prepared for the worst and then I get better so it is so emotionally draining. I almost feel relieved she said it now as it gives me a different freedom in my thinking and questioning my motivation to keep pushing on for more treatment and for whose benefit am I doing this? I know none ofthe boys feel like this but she thinks differently. I'm also not prepared to give up yet.
My dad was prepared to keep fighting when they offered him rads and chemo but the next week when they changed their minds and refused to treat him, he just sort of gave up and died within 8 weeks. I felt relieved that he had given up as there was no pleasure in his life at that stage and I respected him more for that.
Chemo tomorrow and major bed crisis at hospital so dread to think what it will be like tomorrow.
hope all well with everyone else and lets try to get a date when we can meet up.
I'm sure she didn't mean it in a horrible way, kids say stuff without thinking, I'm hoping she doesn't remember making that comment as in years to come it may come back and haunt her terrible. perhaps the boot is on the other foot, maybe she has been preparing for life without you and is trying to make it easier and more acceptable for when that frightening time is going to come.
After watching my gran die from cancer and my mum having to move back to scotland for the last 6 months to care 24/7 we also had to watch my mum age and come very close to a nervous breakdown, i sort of had the same thoughts of your daughter, infact thought more but that will come another time, luckily I was older and kept them in my head, however when the time came I felt awful.
Cant believe tax credits making you wait until april, they always insist in their adverts that you have to notify immed of any changes in income. plus with OH cutting back his hours to 16 this should put you in the qualifying wages.
Enjoy euro disney, just go and relax and go with the flow, hopefully no mishaps or if there is try and ignore them so that the kids and you and your mum will really be able to let your hair down and chill, and talking of chill we went feb one yr take loads of layers, we love it there, I have been looking at the adds as kids under 12 go free and both of mine qualify at the mo, OKH is being extra cautious due to work. but i keep thinking what a fantastic deal and my dad gave us that Â£500 for christmas, which is still in a drawer in my kitchen. car is due MOT friday perhaps will see how much that costs.
Trace sorry scotland wasn't the great adventure you normally have, hope all sorted and he has apologised. are you feeling better in yourself too. Im back in your neck of the woods for a party 24.1.09 if not working and fancy meeting for sunday breakfast again then I'm up for it, just give me a shout.
Has anyone heard from fit brit, am I right in thinking she had birthday 32 around new years eve???
Sammy hope brother and wife coping and you too, is little pickle still enjoying nursery, has he now got loads more little friends.
Love to you all, Debs
Just a quickie
Kate why does it never just rain but pours????? Am so sorry what your onc said, that is awful i dont no where oncologists were in the q when they were dishing out bedside manner but think they must have been last.
You made me feel very sad with your daughters comments so i cant imagine how you must be feeling especially knowing all the fighting you do is to be here for them. Am sure you are right and that she didnt mean it in that way, kids have ways of saying stuff in the wrong way as they arent as good as expressing themselves, am sure she would be devastated if she knew how upset u have been over her comments.
Euro disney sounds great and good for you for booking it and being positive. I hope and pray you are well enough to go. Maybe see how that goes then do something special for you and hubby.
Dont really know much about benefits or tax credit stuff so sorry am pretty useless on that front. Would have thought they would be pretty good tho so am suprised they arent being more help. Can the macmillan nurses help at all?? What happens with your pension? Is there any way they will let you cash that in or take it early?? Cant believe they have stopped paying you just like that. I realise they have been paying you for much longer than is in the contract but how are you supposed to cope - altho i have every faith that you will find a way as you are so great at getting everything sorted.
Hi to everyone else. will catch up again soon. xxxxxxx
I do feel better after the taxol and my swallowing has improved after 1 dose so hoping this will last for many more cycles so I can stick my fingers up at the onc when he returns from his secondment!!
I think that and something that daughter said on sunday night has made me review what I'm doing and my motivation for fighting for treatment. I don't really know what daughter meant by the next comment but I think she was really trying to reassure me that they will be fine without me and didn't mean to upset me as much as it has done.
I was denitting her - yet again - when she suddenly said 'I don't mean to be horrible but life will be so much easier when you're dead as sometimes you are such a burden'. I just wanted to cry and shout at her but had to control myself and ask why and just acknowledge that it is so confusing for them and everybody including me when I am swinging from being very ill to relatively well. Since then I've felt really unsettled and questionned why am I pushing so much for treatment and to live longer if they feel like that. OH was devastated when I told him and obviously doesn't feel the way she does and neither do the boys. I'm not sure whether I'm just trying to kid myself but i think she was trying to reassure me that they will be OK after I've gone. Anyway, this sparked off the idea that i want to go away so have now booked to go to eurodisney on 26th january with kids and mum as feel I need to do something with them before I'm too ill too. Desperately want to go away with OH somewhere special but after losing that money from when we went to York I feel so reluctant to book anything up. Haven't told the children and don't want to yet as so scared something will happen and can't go.
Heating still not fixed as plumbers reluctant to hand in written quotes so have got 2 more plumbers supposed to bedoing this now. Only have 1quote and hospice needs 3.
Talked to Working Tax credit people who said they would not change the amount they give us when my salary stops this friday. How are we supposed to cope on 16hrs a week and no other money coming in. She said we would be entitled to more from April but that doesn't help us now. Really can't believe that is right. How can we lose my full pay and be well under the poverty line with income and tax credits won't cough up? Can't sort it till monday as last day of pay is 16th january. Will see the benefits people again if get nowhere on monday . I also found that bank has taken out Â£500 from my account to pay for the loan that the insurance company paid up in September so now need to recheck statements from sept and oct to see if they took money then and can't find them at present. Could do without this hassle.
OK so looks like a weekend meet is better. Could do sunday 1st feb or weekend of 14th/15th feb but that is beginning of half term - not that we have plans to go anywhere or am free this weekend or 24th jan. Weekdays - anytime but thursdays and not 26th jan week.
hope all well
do you remember all that long time ago when we were all (incl Moira) coming to bash your Onc, so bloody wish we had.
he is an arsehole.
Think him and my Onc would so make a lovely couple. he has told this so many times, yes eventually he will be right, but how many times have you proven him wrong. so game set and match to you my darling.
dont fret over the money etc, tax credits are usually on the ball now and if OH doesn't get it sorted you have such a strong group of lovely family and friends they will. Just concentrate on whats important to you and the kids, dont waste loads of upsetting time on the phone, let the macmillan nurses or who ever do it.
We have had chats before re OH's, both of ours dont talk about it, its their way, we have to accept it, my OKH couldn't even talk to his mum when she was dying, I literally had to ply him with alcohol to have serious talk with him and then the next day out of the blue he wrote her the most beautiful letter, he did read it to her and within 2 days she died, my sister in law got us a copy (still sealed enveloped) and the original went in her coffin. They will cope, especially with children, I still reckon yours is afraid that if he takes over now it looks like he is giving up on you or showing too soon that they can cope. I personally would hate it if my OKH could manage house, kids and work on his own without stressing, cocking up and swearing. But then I always think Kramer v Kramer and some times that gives me piece of mind.
glad you got the chemo, hopefully with onc out of the way for 3 months you might meet good reg's, personally I now prefer my Onc's reg's, you never konw they may have a different trick up their younger sleeves.
Take care, try to sleep, and just pencil me in for when ever, even if I have to book a day off.
Love to rest of GG, Debs XXXXXXX
Really kate I think your onc is just dreadful! No wonder you are tearful- you sound so busy trying to sort lots out as well as not being very well atall. I havent got long right now. but am in working latter so give me a ring at home. As for meeting up,am busy for rest of jan, but can come down feb, if in week fridays good for me now.
Thanks for nice comments about little H and school, he had intro day and loved it, now is talking about when he goes to school bless him 🙂 I am coming to terms with not having another but will never completeley- I dont think you can really but with what my family have been thro recentley it dosnt matter so much.
Trace I would see waht your doc suggests- have you thought about counselling? It might be good for you to have some time to yourself to work things out
Debs glad you are hanging in there X
Love to claire and Lyne
Saw the onc who always gives me the bad news and has been saying since sept 06 I will live only 3 months!!
Did get my 15th taxol and if well and it working can have more than 18 and he was open and said the others were to try vineralbine later but overall he thinks the taxol will fail now and he is off on a secondment for 3 months and doesn't think i will be alive when he returns - very reassuring!!!
Echo showed heart function improved so water tablets must be working and xray showed that T5 has collapsed - under half the size of vertebrae either side so hence pain so bad.
he couldn't understand where I'd read about bone marrow infiltration as they didn't see it as a problema
Clinic so busy that never let till 8pm and started treatment about 6pm so got hospital taxi home. 65 patients instead of 45, 4 doctors and 3 nurses doing chemo so what else could you expect. Will write to chief executive as been told he reads all his letters and emails. Perhaps i will email and send a hard copy.
Saw benefits people and spoke to financila advisor so have plan so need to make lots of phone calls tomorrow and also wait for plumber to get quote. Need 3 and then submit to hospice and they will pay some/all depending on what the price is. Also he told me to speak to union so have done that and there is a part fo the unon that deals with sickness and support and maybe grants so talk to then also.
Cried so much today I can't believe it but have had a lot of hugs and handholding off people I don't even recognise fform the clinics even from some of the men so must have looked a pathetic sight with no make up or wig.
Meant to post earlier but not home till 830pm so did normal things with children, discussed it with OH and phoned plumbers despite me asking OH or fast becoming LOH (lazy OH) or ATUPOH (Afraid to use Phone OH) and came to bed.
Nearly 2am now and got to up reasonably early as carer here to do domestic stuff and been up since 5am and need to make loads of phonecalls to sort out money.
Lost the plot what we are up to but as onc doesn't think I#ll live much beyond 3 months would dearly love to meet up - someone come up with dates and venues and email or txt. think we will probhably have to arrange several days as can't see how we can all meet on one day due to people's work and hospital commitments. Diary downstairs but apart from thursdays and last weekend of january pretty much free.
Love to you all
sorry to gatecrash ur thread but i was wondering how kate had got on with her onc today. i hope u got the results u were wanting and more time for u and ur family.
Trace - sorry about what happned with g. Si must be good to have put up with it. Think you should see G and tell her - being high is just as bad as being low.. Don both andneither are constructive. Hope you just didn't suddenly stop the happy pills but weaned them off.
As you can see it is now 530am - can't sleep. Manager cae to see me and my pay is being stopped with immediate effect so seeing benefits later this morning and then chemo. Work have paid me sick leave on full pay for nearly 2 years now so can't complain but it was the shock of the speed of having no money.. She knew before xmas but didn't want to tell me and now so late. ill health retirement is worst option long term for family so manager keeping my contract open so get full pension when i die.
let you know how I get on with benefits and chemo. swallowing so bad again and getting very scared now.
Must go - suddenly fell slep=epy]Kate
Wow there seems to be alot happening.
Kate glad u had good xmas and new year, boiler sounds a nightmare but hope its sorted now. Agree with debs push push push at onc and use whatever blackmail is needed!!!
Debs well done on new job and b****r ur boss, what are u meant to do just stay to please him i dont think so! Glad hubby has work for jan at least will keep fingers crossed, Kate is right these are scary times.
Sammy i no how hard it will be for u with little h going to nursery but i bet he will love it......hope u doing ok with all the other stuff and that christmas wasnt too sad for you all.
Big hugs to claire and lynny. Hope u guys are ok and had a good xmas...
Christmas was fine apart from having to work christmas night then run around like a mad thing getting ready for scotland the following morning. It was good and we did have a good time and simon really enjoyed it although didnt think he would cos of the isolation. Unfortunately G ruined it slightly by behaving like a spoilt child. He treated si really badly too and am very disappointed in him. It has opened up a whole new can of worms for me to think about (like would i prefer to go to the himalayas alone)!?! I havent spoke to him since being back and dont plan to until he apologises (it was nothing to do with me or past just him bein idiot - the others we were with were shocked at his behaviour too) Dont really want to go into it on here but will spill the beans when i see you all.
Did lots of walking and saw some amazing sights including being surrounded by approx 60-70 stags at dusk on one of the roads far north - thankfully i was in a car so no mishaps. Hogmanay was great and ended up smashed - not such a good idea as spent new years day crying all day so alcohol obviously not good for me at the moment. Have also had issues with the happy pills as felt more or less me again so stopped them only to drop deeper into the gloom that now appears to surround me permanently. Started them again with some persuasion from si and g while away only to go so far the other way it was unbelievable and quite scary, i dont think i have ever been so hyper!!! Still having lots of wobbles now home and every time i think of doing something other`than sitting on my bottom i get panicky, not really sure where to go from here. Am seeing gp again next wk and will see what she suggests.
I think i may have pinned too much on scotland solving all my problems. I didnt stop to think that there would be 5 of us and no time for me to think things through, so really no better, if anything am worse cos of all the g stuff. I miss my friend but am not prepared to let him get away with how he behaved, and if i did let him get away with it how is that fair on si. God, i wish id never gone, am hoping he will think about stuff and call me in a few weeks.....watch this space!!!
Have yet another rotten cold and a sore throat that i have now had for 3 weeks!!! Think it may be time for me to think about getting signed off work for a bit to sort myself out.
Enough of my waffle. Hope u girls are ok lots of love Trace. xxxxx
kate we were typing together - really get on at your Onc - and yes emotionally blackmail as much as possible - as for get together - i can usually fit around, although dont think i can do week days anymore as once i start new job i will be working 5 days per week, blimey haven't done that for about 10yrs and need to save as much hols as possible for school hols.
Hey Sammy, good for little one going to nursery, this is when they start to get a bigger social life than the parent and sad on you, I know you always wanted another one, so have a tissue ready for that first morning.
well my boiler is behaving but ringing mates OH tomorrow as dont trust it and dont fancy having my kitchen ceiling on the floor, also over flow tap dripping onto path at side of house and this is now a little ice rink in this weather.
kids back to school tomorrow, hooray, driving me nuts, back to school night bedtime and some homework.
OKH back at work today, the 2 kept on have been told def work for this month, so fingers crossed some more contracts will follow or be chased, snow was bad quite bad round here todday, OKH and work mate had to stop and check out a van driver in a ditch on the way to the cotswalds, thn got stuck behind a school bus that took 40 mins to get up a quite small hilly country lane, they could see the kids on the bus laughing like mad, they were bricking it as the bus kept revving and skidding.
haven't got my start date for new job, my boss inst happy, tough really.
went to see PS today, he is going to chase my tattoo appt, also wanting to do some more lippo + re-use some of the fat to replump the nipple as it has shrunk quite a bit. still when in a vest pj top it looks reasonably good match, chose to go under local again as was fine last time.
Kate sounds a good cosy new years eve, hope you sort boiler + onc.
well girls 2 days on diet and still sticking with it, aren't I doing well, want to loose 10lb, we are currently all dieting together at work, except for the 3 skinny ones, who have promised not to eat chocs and crisps at their desks. so drinking loads of lemon in hot water + back on the rainbow, do you remember that so well from exeter.
love you all GG, Debs
Thanks Debs - Spoke to advisor at Warmfront this afternoon after 10 mins of being on hold - good job its a freephone number and told takes 4 -8 weeks for assessor to see you and 6 months for it to be set up - told him I'd be dead by then. He's going to try to speed it up!!!
Both my hospice nurses are off sick and the other one who I'm supposed to be seeing tomorrow at the hospice has been given us duff info about British Gas so not got much faith there. Tried our local MacMillan centre who told me to phone our local benefits and welfare advisor who were very good before so will do so tomorrow as know it is one of the days they are open!! If not could try MacMillan benefits helpline. Wish I'd read the warmfront info when I received it via the motability scheme so if anyone is getting DLA, I'd say get assessed now and if you need help in future at least it has been set up.
Other news -
My stairlift has been playing up so phoned and they came and fixed it within an hour - the man was really helpful and explained different safety features and how to stop the alarm if the power goes off and ordered me the winding handle incase of a power cut and an instruction manual. Hubby signed to say we received it when it was fitted but as I was ill in hospital and hubby so worried he didn't read what he was signing so they are both on order now.
Friend took me out food shopping so that helped me as didn't get overtired and another friend came round this afternoon to cheer me up. Been out to MacDonalds tonight before seeing OH's mum as it is her birthday today. Really struggled to get bread roll down past obstruction and the look of fear and disappointment on the children's face was so upsetting, I struggled not to cry. Just don't know what to say to onc on thursday - if tell him my swallowing is bad he will say taxol not working even though not had it for 4 weeks but if i don't then worried he will say to have chemo break. Hope I can persuade him to give taxol for next 4 weeks - will try emotional blackmail - birthday on 30th so want to be able to eat then!!
Remember, we all met up last year in London near my birthday and I had that lovely liquer - baileys and something else but can't remember what the other liquer was.
Really sure my hair is coming back now - top of head as fluffy as my face!! Now how many women can say that!!!!
Please can we arrange a date to meet - really have a need to chat and be sociable or do i just chat too much and bore you.
Love you all and miss you
Hope you don't mind me jumping in Warm Front was recommended by Motability it is a government funded initiative like everything it is open to abuse by cowboys.
ATECLimited, Freepost RRAB-GTZB-YTRS, Richmond House, The Watermark, Gateshead, NE 11 9SZ tel 0800 316 2810 These were the ones that we dealt with have had no problems. Got a free boiler and heating is now really hot hope they leave these details on but if not I can pm to any of you that have a wonky boiler.
Be careful with 'Warmfront'.There was a thing on Watchdog about them charging lots of elderly people thousands of pounds when it is supposed to be free.There were loads of complaints about them and they were being looked into by trading standards.
Sam - that sounds sad about nursery and not being pregnant. Sounds an expensive start to 2009 for all of us then.
Slept only 4 hours last night but feel OK. Think I'm manic from the dex and as not had chemo have energy that is useless to use to any good use and if I do too much my ankles swell so presumably my body is saying I;m doing too much
Hi all, and happy new year!! hope your biolers all get sorted.
so far this year my car has stopped working and h's buggy broken! He starts nursery school can you believe it! next week he will go, mornings only. Very wierd I feel like it is def a whole new phase, was hoping to be pregnant with the next one by the time h started 😞 well thats not going to happen now.
Debs - That leak sounds awful - glad you know someone who can help you get the boiler working etc even if you are having to wait. We did get a plumber round on new years eve - friend of father in law - supposed to be coming back next week to fix it but neither OH or me can remember if it is just the valve or if it is the timer and boiler. Had no heating for 3 days and now he has set the heating to be on continually from 7am - 930pm as a stop gap but can't alter the thermostat!!! We can adjust the boiler power but doesn't seem to make much difference so seem to boil in day and then if awake late get cold!!! Can't do anything about it but much better than being cold. Need to look into warmfront stuff as girls on secondary forum say if getting DLA they can give grants so must google that or hope the hospice nurse knows about it.
My hair is growing back faster on my face than on my head. Youngest commented that my moustache is bigger than his elder brother's so like you will have to go back to defluffing. Face very puffy due to dex so feel a bit freakish at present.
Pain on swallowing definately worse and spine is clicking when I breathe and move which is worrying and so am assuming that is why I get this excuciating intermittent nerve pain. Will have lots of questions on 8th to ask consultant. The big one being why didn't he tell me I have bone marrow infiltration - explains why my iron levels are dropping and wbc is so slow at picking up - saw that on the computer screen at the GP on monday. What doesn't he understand about the word 'honest'?
Actually quite enjoyed New Year's Eve party and got back home at 1130ish and climbed into bed with family. Youngest fell asleep at 1145pm which was a shame. Took some photos of twins, OH and me in bed just before midnight and posted them and some photos of what I really look like without wig and makeup on Facebook. Needed to join Facebook so can keep track on OH's niece and her travelling and then thought I can post photos more safely there than on blog. Hope I'm right or else will have to delete them all. Seem to have refound some old friends so pleased about that.
Children are argumentative and think we all need to get back to the old routine - daughter says she still needs a few days more off so she can get back to going to bed earlier!!!
Love to you all and must set date to meet up really soon. Not sure if weekday or weekend best or if we will have to go for date that only some of us can meet. Prefer if we could all agree on a date but it really might be impossible.
happy new year GG,
well as per last 4 years got to end of year just wishing for the new one to begin.
got home from work monday and standing in the kitchen chopping veg when I heard drip drip followed by quite heavy efin dripping me and okh rushed upstairs to find combi boiler spilling out loads of water, luckily airing cupboard so able to throw load of towels to help save kitchen ceiling and okh got buckets, after emptying about 5 builders buckets of water we managed to stop the water, neighbour works on water digging roads and had one of those stop taps to use in street and that was the only way we stopped flooding the house, my best mates husband is our plumber and they are away, neighbour and OKH are not combi trained however not idiots either and took boiler cover off and found washer and clip covering a pipe not where it should be, you should have seen the scene, OKH in cupboard, me at bedroom window soaked from catching water and neighbour in the street stopping and starting water so we could find leak. anyway all OK, heating and hot water working, had huge water sagging kitchen ceiling, it was 3/4 of bucket of water once we put screw driver into it, will get plumber round once back in UK, he's free as best mates OH, ceiling looks to be fine so dont think we need to put claim in, just imagine if I had waited another adds to cut veg.
Blood tests are all normal, was actually quite surprised as feeling rather shite of late, also had to wax my under chin again today as really disgustingly blokish, have 2 appts this month, 1 with PS and the other with BC have been told already that Oxfordshire has changed to 2 year mammos, not that bothered as mammo didn.t pick up my original lump and it saves more time of work.
For some reason weighed my self christmas eve and I had lost 3lb. but back to normal heavy weight this monday, so at this rate no weighnt gain. all our dept are dieting together new year, I'm not the heaviest but just know I will struggle the most to loose weight, infact quite pissed that my thyroid was in normal range was rather hoping it was uinder active.
must go, been to sisters today for new years day dinner, mum and dad back home in scotland, although still had her on the phone at 2.30 this morning, we had a few mates and neighbours round last night, good crack.
Love you all. I'm very knackered,
Well first sleepover is tonight and all going well apart from we have no heating and I'm sharing the double bed with an active 8 yr old with a smelly blanky. Tomorrow, daughter has friend over for the night so that will be easier as they will just shut themsleves in the bedroom.
Got no heating since lunchtime but didn't realise till 7pm so freezing now.
Saw GP today as in great pain since this morning in the same place as 3 weeks ago when had xray of chest and noting new showed in bones then. The pain appears to be a muscle spasm but oromorph and diazepam isn't helping and when I breathe deeply or move, I can hear a crack in my back where my secondaries are in my spine. Heat is helping a bit but don't know how I will sleep tonight as can't get comfy.
Hoping someone in the hospice can suggest something or at least see one of their doctors for advice and pai control.
Now going to neighbours for new years evening - they have children so party starts at 6pm so will stay for a while and then come home to bed for midnight - real party pooper aren't I?
Debs - glad your dad came to the rescue. Sorry about the tamoxifen etc but it must be doing its job as otherwise you are well.
The credit crunch is so scary isn't it? I think so many people and it seems to be the men feel they will never work again. One pf OH's friends worked in the building trade so he was made redundant in November - he is coming round to do some decorating which will help as downstairs is such a mess.
Trace - really hope scotland makes you feel better - just please don't have any accidents this time!!!
Hope everyone else OK.
Just getting tired with all this socialising and eating!!
Next week, have promised 2 sleepovers but not doing anything on new year's eve so probably just watch telly in bed!!!
Love to you all
OKH has been kept on for another month, only 2 of them kept on books to go back to cotswalk mansion as some of the work was rushed and not their usual standards. hopefully some more jobs will come in, at least another full month salary, I also had my job interview christmas eve as decided to go for other area and got a phone call 1 hour later to offer me the job, didn't have to go thru a agency or HR, just had a good old fashioned inhouse interview with 2 of the team managers (who I have worked with previously in another dept) its slightly more hours so the money will come in useful, am now working 5 days not 4 so no more areobics and girlie lunches on a friday anymore - but did say to OKH that i will join gym and get in a couple of evening classes.
also had blood tests christmas eve after having a big chat and cry with my GP last week over my increased hate of tamoxifen, how I am having to force myself to take it and whats it doing to my body, he said my weight gain is all around my hips and lower back and its bloating from the bulking agencies, the other side effects are all tamoxifen too, I feel like a moody tired fat old woman and exercise is not making any difference like it usually does, I have swapped brands and hopefully bloods might help, he wants to check thyroid + the usual. .
think my dad had been feeling sorry for me and my sister, due to hassle over thrift and both our OH work and gave us both Â£500 as our christmas prezzie this year, I nearly dropped my glass of wine when I opended the card and saw it all in new shiny Â£20 notes. he said we may as well have some it now rather than inheritance.
so christmas was lighter mood around here, i did well, but did get my own prezies for OKH and the kids to wrap.
went out this morning for a 2hr walk, always like to get out on boxing day after christmas eve and day also drinking loads of water with milkthistle. have some friends coming round tonight so must go and try and tidy around presents.
Trace enjoy scotland and think it quite right to enjoy a tipple especially with working christmas night, your on tam too, maybe this isn't helping with depression, I had my big black clouds straight after I met my Onc and that was a hard one to get out, luckily I went straight to my GP, brokedown and he took me under his wing, he talked me back into treatment and insisted I went to see him between every chemo. hope those highlands lift your spirits you usually come back with fanastic stories and see some amazing and magical sights, hopefully its the tonic you need.
Kate I did watch the programmes but cant rememeber the full order as by then me and my mum has consumed 2 bottles bubbly (between us, so not that bad) glad you were home and feeling better.
Sammy, Lynn and Claire think of you all too, Sammy hope it wasn't too sad and pickle had been good for santa.
Love you all
Hope you all had a fantastic day yesterday. We did and quite relaxing as well as had main dinneer on christmas eve. Although fell asleep in evening and missed the telly I wanted to see - strictly come dancing, ice skating and the 30 min wallace and grommet programme.
Trace - hope you find something that helps you with your depression. It's so difficult. Trace - can you email/txt me on how to get to lyn's facebook. Cheers - cos sounds as if you are drinking again now!!!
Otherwise, no news to report!!
Have a lovely day
Sammy thats so sad so sorry to hear that, sending you and your family lots of love and best wishes.
Debs hope everything gets sorted with both urs and hubbies work, worrying times we are all having.
Kate, so glad u r out of hosp. Sorry cos i haven been on didnt realise u were in hosp. Hope things are improving.
Lyn good to see u using facebook even if u not on here
Claire hope u doing ok.
Iv made it through today with only a few wobbles, was the big 3 yr anni of diagnosis today (or yest now)!! So no exactly how ur feeling debs. Not one person remembered other than me obviously. When i spoke to si and my mum about it all i was told is its not something they want to remember! Wouldnt mind a bit of that myself, will people ever realise we cant forget what we have been through and that it has probably defined us into the people we are now. I no im alot different. I understand why they dont want to remember but they also have to realise this is something that is going to be there forever and acknowledging it makes life that little bit easier for me....
Enough of the moaning. Heres wishing you all a very very merry christmas and with any luck a not so grim new year.... Am working xmas day nite so will prob be online then but from when i leave work boxing day im jetting off to the scottish highlands once again for some snow filled festive fun and a bit of a drunken hogmanay (a girl can only stay sober for so long and i think i must be one of the few that has not touched a drop so far this dec in an attempt to combat this damn depression - not working, so s*d it from boxing day im trying a different tact)!!!!
Take care girlies and have a fanspanglytastic chrimbo. xxxxx
Seasons Greeting to the Gobby Gang,
We all have loads of personal shite going on at the mo. but lets make the most of this Christmas, yes we will have our sad moments but lets toast and remember the smiley good moments too. Chears me darling dears!!!!
Love you all, as I always do
and as always still my 7 kisses.
Kate glad to hear you are home. Will want to phone as would appreciate your advice on something.
Debs thanks for the chat. I hope OH manages to sort something out, it is so wierd as has happened so fast this time round. My sales to shops are down hugely but private sales went up how strange is that.
Have to go
Hi G Gang
thought we were on good side of luck with thrift, then OKH got sh*te news friday, because they have really had to rush current job due to home owner wanting to be in their cotswald mansion before christmas, they have been told they probably have no work after christmas shutdown until spring. cant believe it, talk about out of the blue, and the best thing we are talking CEO of a very important high st clothes store and now he has changed his mind to the end of jan. fan effin funtastic. he's probably lost on shares but not his basic wage. this is the first time company have had break in work and had to lay off. no redundancy either as classed at buildings. not fretting, have told OKH nothing to do with him. infact boss man trying desparatley to keep just 2 on, and OKH one of them as most skilled and able to take crew and supervise, although this time really sh*te, last recession they were able to get work abroad or in factorys this time they are all shutting, its really bad round here, 3 big skilled car factories have shed 1800 jobs and now loads more forced into 5 week christmas breakdowns and reduncies. there is nothing. have told OKH if no work new year thent o get P45 immed and sign on, no half weeks or day or 2 here or there or we will be out of pocket no end. he is 42 and never signed on in his life, always worked full time from age 16.
Sammy really pleased we talked the other night, take care and give bro and sist in law loads of hugs + little one, Kate glad you are back at home. its only 4 days away,.
Lynn hope home life gets easier, you are a trooper going back to brum, I too would miss London, remember we will always come and visit if you fancy a break.
Love you all and to Trace and Claire
i'm home - hurray.
The augmentin seems to have done the trick although still wheezy on walking etc and still coughing up horrible stufff. The children were so surprised and pleased to see me at home as they had been at a family gathering all afternoon and it hadn't been clear whether I would go home today or sunday. Now I'm home I've rechecked the tablets and they've given m e 2 types of water tablets but the discharge sheet only shows one! I know they were planning to change types so I didn't need to take these potassium fizzy vile tablets so will have to ring the ward and get hold of someone tomorrow as i don't want to be a dried up prune.
Great excitement for me is that the stairlift has been fitted. Although it moves at an astonishingly slow speed and has been used before, it makes me feel as if I have vertigo if I look down when we are going up!! It makes life so much easier but I wish it didn't alarm when it starts and stops!!!
Sam - please ring me anytime if I can be of help at all.
Everyone else - love you and miss you.
Sammy will try and call u tomorrow, if you are busy and phone on voice mail, dont worry re calling back, have read the first post but didn't manage to read the one you edited. You sound very sad, I have an idea but so hoping I am very wrong. Take care. XXX
Kate, hopefully out soon, you need to be home for christmas, lets hope the antibiotics kick ass.
OKH went to his mates funeral today, I didn't go, felt bloody awful, I always liked his mate however thought I was going to get thru this year without going to a young presons funeral, was so hoping this december was going to break the curse, got very emotional when getting out the christmas decorations, remembered how carefully I had packed al the baubles last year and had even put in the kids letters and cards from early years as safe keeps, just incase.
Went to sons christmas carol service tonight, I find it very hard, it was straight after his year 2 nativity play that I was told I had BC, then still had to do school pick up and daughters yr 4 carol service 2 nights later. That school hall and away and in a manger really test me every year.
Sammy you are right, with your comment above,
This now sounds very inappropriate but I get my thrift tomorrow, sisters work somehow managed to get hold of the Â£100k to pay out, rumour has it they have a house to let!!!
Love you all, will post again before christmas and it willbe a more christmassy mood.
Just logged on to see if news from kate.
Thanks jane. Life is just so ............. unfair, unjust, desperate.
I will text kate but hi honey if you manage to log on too!! Lets hope you can get out soon xxxx sam
Not sure if Kate has texted any of you yet. Just to let you know she's back in hospital with a chest infection and being treatd with anti biotics. I've just had quite a long chat with her and she's hoping to get out in 48 hours.
Sammy...so sorry to read your news.
I obviously don't know what you are referring to in your post - but hope you and your family find strength and comfort in your very sad circumstances. Everyone on this site has quite enough to put up with without more upsets and problems. So thinking of you.......