Kate will hopefully be out of hospital on friday and has app for the marsden on tuesday which she is really pleased about. Have to dash but will text you xxxxxxxx sam
Hello - well I’m home but it was a bit of a disorganised discharge - no surprise there then!!!
I’ve got my letter from the marsden today about next tuesday and came home with a printed version and a CD rom of my ct scans and bone scans. Do you think my computer will read this CD Rom or do you have to have special NHS software!!! Do I dare read it???
As my sternal mets are causing me a lot of pain, they added in dihydrocodeine which really helped but then they didn’t order any to take home with me so had to see the GP about 30 mins after getting home as I couldn’t order it over the phone - too addictive so have to be seen!!!
The other biggy is that the portable oxygen didn’t turn up so nearly didn’t get home as didn’t feel I could travel that far without any oxygen as back up!!. The hospital lent me a portable small cylinder which we have to return but at least I’ve got home, to the GPs and should be able to get somewhere tomorrow if need be. When I rang the company at 4.30pm, they told me I was on the list to visit today but now at 715pm, they still haven’t turned upso not hopeful!!! Will be on the phone tomorrow then to get this sorted and also to the podiatrist as I must get these manky toes seen to.
Honestly, Trace - you do like to overdo it and probably more accident prone than I am - is that humanely possible?
Anybody, heard from Lynn - we really should have got a contact number off one of her mates before she went in - we weren’t organised enough!!!
Thanks to all of you for your messages of support and all your texts etc.
Must go - chaos here
Kate
Hey Hey Kate you are home, fantastic, was going to text earlier but school christmas fayre so glad I logged on tonight. Take it easy. I remember when we went to disneyland paris a couple of years ago and lady on the coach had oxygen, it did have to be declared going thru tunnel but dont think she had any other problems. Do you really want to look at disc of scan pictures, dont think I would, I remember eventually reading my path report on GP computer screen and it turned my blood cold, very different experience to being told verbally by breast consultant and Onc and she was bad enough.
Re my recon, have to be careful what I type on here, you know they have re-booked me in as different clinic, well had not heard back re final appt with PS and was getting worried it was going to be canx again, so grew some balls and called the sec, she knew my name immediatley and op date (not a good sign felt like I had caught her out talking about me, but then I am quite paraniod and cynical of local NHS) and yes still going ahead as planned, however the hospital meanies had tried to get hold of the diaries again but luckily they got away with it. Until I am wheeled into theatre and told to count down I will not let myself get my head around it. The funding issue here in this county is ducking awful, the cuts at local hospital are even worse its very frightening, we will be lucky soon to have a full A&E, maternity and childrens ward at local hospital. Both of my 2 were emergency deliveries with cord wrapped around their necks, son did actually crash and was told 12 mins to get him out before brain damage, well if cuts continue then apparently ambulance trip to JR 26 miles away on a awful road thru villages and they reckon it can be done, B*llocks.
Anyway rant over, sorry Kate, anyone heard from Lynn, I sent her a lovely text with a big red heart declaring my love and haven’t heard back. Hope the rest of you are doing fine and busy with christmas shopping.
Love to you all, Debs
XXXXXXX
Well the fun with continuous oxygen continues!!!
I rang the company first thing on friday morning to be told that they couldn’t deliver till monday. I was too short of breath to be angry so phoned the GP surgery and the respiratory care nurses for them to chase and handed the phone to hubby for him to get it osrted. After an hour, the company rung back and siad they would deliver me 4 cylinders but couldn’t deliver the bag to carry it in or the oxygen conserver till monday. It then occurred to me that I was going to the marsden on teusday and would need more for that mammoth trip. The conserver apparently makes the cylinder last for about 8-10 hours rather than 3 so rather an important bit of kit then!!!
After a couple of hours, the company arrived and gave me the 4 cylinders and changed the firebreak on my tubing as it apparently should be close to me and not the machine and wait till monday for the rest.
One of my friends came to see me so that helped pass the time with mum and hubby here as well.
the hassle with oxygen though - had to phone the car insurance, home insurance and the fire brigade. Supposed to have stickers on the car as well and inform the electric company as the oxygen company or is it the NHS contribute towards the extra cost of having an oxygen condenser in the house!!
It is also noisy - like having the washing machine on all the time and as only 1 machine it means I leave a trail of oxygen tubing around the house which gets caught on things or i trip over it or the kids trip over it and it is a pain plus the noise of the nubulisers every 4 hoours and swallowing loads of pills, I think i have reached that point of realising how ill i really am and getting very scared about it all.
Saturday night, we met up as 4 couples to celebrate birthdays so that was different sitting around with a portable oxygen cylinder and teh sunday went out for the local morris minor club christmas dinner. Think i need a name for my cylinder - cecil perhaps? Anybody got any funky ideas for an oxygen cylinder!!
Today, have finally tidied the corner of my bedroom so can now open the wardrobe door. threw yet more nursing magazines and paperwork away and sorted out clothes for charity etc.
Had a very tearful evening as everybody so stressed with worry about me, kids all upset and I find it so hard not to lose my temper all the time. I feel all my family will remember me for is my bad mood and I can’t think of anything nice we’ve done together or had a laugh.
Eventually, we looked at some of the photos in their memory books and that made me feel that we had had some good times.
Off to marsden tomorrow so have to see how that goes.
How’s everyone else doing?
Kate
Hey Kate…glad ur home but as always u make me so sad to read ur posts…
There is no way ur family will remember u only for bad moods, never ever ever… and as for not being able to rememeber anything good u have done with ur family - just read back thro these posts, u do more with ur family than all of us put together…
I no just how noisy those machines are as use them at work and how much of a pain all of that tubing is too especially when the kids get themselves all tangled up in it!!
Take it easy, u dont have to get everything done ur not superwomen however hard u try, just enjoy yourself and ur family and give the o2 company and the marsden hell!!!
Not that great with names will let one of the others come up with that!!!
Debs fingers and all else that can be are crossed for u on 10th u must be getting very excited and apprehensive. Will hotmail details i have for hospital now, in fact i may give them a ring and mail u reply altho i realise i wont get much out of them…Did tell Lyn i may be able to visit on 8th but not gonna happen now as having party for kids at work and have been asked to lend a hand (86 of the joyful little darlings!!!) Will have to text and let her no.
Sammy how did ur thingy go at the weeekend??? I did look out for hubby at the gig but was sooooooo busy and quite a few people fitting the description u gave me!!!
Clare where r u hon…u have been very quiet lately is all ok???
As for me foot was mending itself quite well until si decided to sit on it last nite!!! As u can imagine it hurt like hell… Yet another of our friends is pregnant bringing the total to 9 or 10 i think at last count so have been proactive in that i have come up with a plan to allow me to stick head in sand…or run away…whichever u prefer to call it. Plan on finishing flat, remortgaging to pay off debts then renting it out and travelling around the south pacific!!! Sod it have had enough of baby talk everywhere i turn…
Ok gonna go and do some work (prob guessed i am on nites) no babies…yay!!!
Lots of love to u all and will hotmail in a min.xxxxxxxxxxx
It was good to get out of the house for the day even if that did mean just sitting in the car and the waiting room. Did manage to cook quite a bit of dinner tonight without the use of oxygen - well didn’t want to blow the house up!!
Well now I’m too poorly for tykerb. The guy at the Marsden said he thinks it is best for me to have a platinum based chemo like carboplatin or vincristine as I am deteriorating so fast. He felt that the tykerb and capecetabine would not be strong enough as my lungs are so congested with the lymphangitis. My reg talked about the ‘limited window of opportunity’ and he was saying I needed chemo within 10 days or I would be too tired to tolerate it. He is worried that the growth in my bones may compromise my bone marrow and so then it would mean that I would be unable to make the red and white blood cells and platelets. All in all it was pretty depressing as he made it seem that I am running out of options my bone marrow is not strong enough even though there are other chemo options. as for licencing of tykerb - well he kept tight lipped over that - doesn’t sound like it is happening soon though so why. Have they not got the numbers or does the data show it is not effective enough to get it licenced and through NICE. However, if they are only using it at very much advanced spread stage then they are not going to get enough survivors strong enough to make it.
Trace - understand about the baby thing - that happened to me when I had fertility treatment and everyone else kept getting pregnant. I could feel my heart breaking.
My sister is coming down tomorrow and thursday which will be he first time we’ve had any adult time since Nov 06 when we went to prague. Fancy looking forward to hemo just so we can chat!!
Hope Lynn’s op went OK today.
Kate
Kate darling,
so sorry that is not what anyone would want to hear. So you will be starting chemo soon. I remember you saying that an onc (was Mr cold fish) was a bit sceptical about tykerb. do they use it alot in the states as an intermediate chemo I wonder. I find it so difficult to believe you are that ill, it wont quite get into my brain, like I cant rationalise it…Will text you.
Trace so short bald fat man was too general? ha ha. And thanks for being proactive about lyne, will send her a card but can someone text me her surname as such a muppet I cant remember it.
My fair was really good. I lurve the people that organised it, they are such nicce people. I had to cancel it last year and was great to be back,
take care GG
xxsam
Oh Kate
like Sammy says can’t beleive we are hearing this, lets hope you get you back on chemo asap and strength gets kicking back in. I am not too read up on further chemo plans so cant make any comment re which one gives better results, aren’t platinum the better ones or being stronger does that mean more side effects or going to straight to these does that now mean lesser options. Its all so ducking crap, At least you now know and no more time wasted worrying you can now focus on what you are getting. hope the kids have picked up again.
Sammy glad your fair went well, I expect it was good getting back in with your friends especially this time of year.
Well I eventually had the courage to buy my hospital stuff last night, cant beleive at this time of year again I am buying boring pj’s, sports bras and plain cotton knickers for hospital operation, I know this is the op I want but it quite depressed me as brought back memories of dec 05 and as uaual I start looking at the nice strappy pj’s and bras. now just everything crossed that I dont canx again.
Going to oxford sat morning for sons football then london afternoon with close friend and our hubbies to eat, drink and go to irish group gig. so am being really good this week eating lots of super foods and drinking loads of lemon in water to try and get my body fighting fit.
If anyone gets to visit Lynn please give her big hug from me.
Claire, where are you, have you got the results through yet from Oxford, are you OK.
Trace, take loads of care and next time give Si a good bloody kick with the good foot.
Will post again over the weekend, love to you all
Debs
XXXXXXX
Not happy at all.
Onc does not want to treat me at all now. He feels that I’ve had so much chemo in a short period of time and that it won’t work and just will make my quality of life worse rather than better.
The other problem is that since I’ve had that spell of gastroenteritis, I’ve had problems swallowing which has now got worse. I couldn’t even swallow porridge today and was sick.
When the onc saw me and i told him about my swallowing, he looked at my CT scan and could see that my oesophagus is completely surrounded by the tumour that is beginning to block off my main and right branch of my bronchus and at one point completely surrounds it and my squashes my oesoghagus completly. He feels stenting won’t work and radiotherapy too dangerous as to get to the osephageal and bronchus tumour, it will damage the only good part of my lung and probably cuase my previously irradiated skin to break down. He discussed this with another consultant who felt she could use rads but I would need to come off herceptin and they will ask about stenting.
Eventually, I persuaded him to give me the gemcetabine/carboplatin but missing out the day 8 gem and see what happens.
He is reluctant to put in a long line and apparently one of the nurses says if the tumour is close to my aorta and my heart it may be too dangerous. I asked him about the possibility of tube feeding and he refused so basically I feel he is going to let me starve and dehydrate to death.
He has given me the maximum of 3 - 4 months so on a real downer today and know I must get on with everything.
At least, my sister was with me so that helped and the MacMillan centre gave us a private room so we could cry in peace.
How’s Lynn?
Katex
Didn’t wake up till noon today but woke up with no chest pain and actually can swallow without pain. Don’t know how long it will last for but such a relief to be able to eat again without pain or difficulty.
Shows I was right to push for chemo.
Sorry to hear Lynn not so great at present - hope Sarah posts soon with better news.
Kate
Oh Kate, I am going to steal one of Moira’s more famous postings after reading your latest update.
F*CK, F*CK and double F*CK. (dont think any of us could word it any better).
So relieved you were strong and pushed for more chemo and able to eat and swallow, the thought of you not eating or drinking is horrendous, as for the other news not surprised you were on a real downer, was it better to have your sister with you and how are OH and kids taking the news.
Lots of love to you all. just now going to read update on Lynn.
Debs
XXXXXXX
Oh blimey kate… can you see other onc… if you are not ready to cease treatment then he has to take his lead from you surely, I know you are not ready to stop.
God I’m so sorry. Thank goodness your sister was there, but how terrible for you both.
I’m pleased to hear you’ve had improvement so quickly, hopefully you can go in and wow him next time to show him.
I dont know what else to write, apart from to give you my love and say get in touch when you need to.
xxsam
Kate
Words fail me. I just dont believe it i am so so sorry. The only thing i dont quite understand is why that doc thinks he has the right to withdraw treatment if you want to continue, is it his life on the line - i dont think so, ok so that may be his opinion but its YOUR choice and your life…where the hell does he get off???
I wonder what he would be saying if it was him or a member of his family in your position… Am sending you lots of love.xxx
Lyn sorry to hear ur not feeling great have posted on other thread but no ur not reading them so texted instead.
Debs well havent heard from u that it cancelled so obviously going ahead. Hope u had a great weekend and wishing you lots of love and luck for tomorrow…I no exactly where ur coming from re bras and pj’s. When i went shopping before meeting u lot that day in london i walked around m&s balling my eyes out, wonder what on earth people thought??? Not that i care…funny reaction tho and not one i expected!!! Thought i would be looking forward to the time i could wear all that nice stuff again, but all i seemed to be able to manage was to think of what id lost and how im scarred for life - silly really, especially when i think of poor kate…anyway gonna stop waffling just wanted to wish u luck. Text if u can to let us no u r ok.
Lots of love GG.xxxx
thanks for good luck texts, kate and trace.
well i have washed my pj’s and started to pack my bag, will call the hospital tomorrow am just to make sure they have bed for me, have had a bit of a nervous feeling all weekend, will text you all tomorrow once i have spoke with oxford.
Kate if you feel better on the chemo then push for the next bit, escpecially like you say if its helping with eating and relief through christmas.
must go, I have bought now 68 today and am trying to update my MP3 player.
Love you all, Debs
XXXXXXX
Thought I’d post to say miss you all… debs how’s the new boob… lyne darling hope you will be getting out soon… kate how are you? How are you managing the oxegyn at home and when is your next chemo.
Trace I have been thinking about what you posted about babies… you go and have an adventure, and babies may be something that happens latter for you (lets hope) all your friends with babies (inc. me) will be jealous of your globe trotting ways. Leave a litlle door open in your mind for the possibililty of children, I know its different but I wont close the door on having another child and picture having a baby in a couple of years. I’ll go through the grief of it not happening when I’m 45 and not before.
I think about our gobby gang alot at the mo. One of my friends asked me recentley about how you were all doing and she couldnt believe all our stories. I just wish we all and kate and lyne especially get to have a nice christmas x
debs texted me yesterday and seemed to be going along OK.
Not heard from Lynn though so hope she is OK.
I’m doing well but have completely lost faith and confidence in my body and my ability to do anything. I’m quite scared to go out on my own now and I need to and sure I can manage some things on my own.
Went out last night for a meal with work colleagues - could actually eat a cannelloni and a choc mousse - wonderful - makes a change from soup !!!
Also did walk a little way from car to shops and was fine but still sccared to go out on my own.Need some basic food stuff but still worried about going round co-op on own and it’s only a little shop.
Getting confused about my present buying now and wanted some photos reprinting but got the order wrong so will have to go bacck to town which is a pain as bought nice frame and want to put some photos in. think it might be easier to take frame back and use less photos!!!
very tired at present but as pain gone and only need oxygen when asleep -it feels a small price to pay!!
Next chemo is 27th dec - think that will be a long day as we can’t get our blood tests done the day before!!
Claire - thanks for your text.
Trace - I had my children late in life and now looking back and seeing what i did before having children I’m glad i had that much fun. Travelling is important. Hubby has 2 sets of friends who made the decision not to have children and have wonderful holidays and an exciting life. Consider children later not know - you’re friends will all be complaining soon about how they can’t do things and you can.
Hope you all well and more organised than I am!!
Kate
Kate and sammy
Thanks so much for your words of wisdom. Its not often i get all het up about it but for some reason am feeling it more lately (think its the number of my friends having kids). Im not sure im even ready for them - after all i do have to live up to my nick name of judith chalmers and carry on travelling the world, just hate that the option may have been taken away and dont want to leave it too late to find out. But another 3 years of drugs and will be 35… On top of that had told onc originally that wanted to stop meds after 2 years and try for kids to see if i would come out of menopause but just had 2 year scans (all clear!!!) and changed my mind as not ready to have them taken away from me yet and risk it coming back, also got me to thinking will i ever be ready to come off meds and what then???
Have been told after 5 years risk of it coming back is same as for those that havent had it but im not so sure. They said that to best mates mum and she was clear for 6 years and is now terminal at 7 years…I no its all a long way off and am sure im panicking over nothing but dont seem able to get it out of my head lately, i am surrounded by so much sadness and feel like im drowning in it.
God enough wallowing, after all when i think of kate and lyn how can i moan?
Lots of love to you all GG Trace.x
Hello All,
Have just got back from seeing lyne and as I came round the corner she was up and about! and wearing a very shiny corset. Her bad leg is looking better so hopefelly she will get home soon.
So she is through the worst although it will be a long haul for her (6 months in the corset) we will have to make an effort to keep her diverted!
Poor thing she has really been thro it this time and says she is feeling better as she is getting bored and grumpy! But I was really impressed Lyne you are a super star and c’mon mexico. (holiday destination after all this is done with)
H was not on best behaivior but had a lovely trip home and everyone got a running commentory of H’s fav words on the trip back TRAIN!TRAIN!!!TRAIN!!!
oh dear
xxsam
Been busy wrapping pressies for all my friends who help me - seem to cost a lot as so many people help us out!!!
Just come back from youngest’s school panto thingy. it was very good but have to go back tonight to watch the twins one!!!
Seem to be doing ok on the eating front. Painwise not so good - central chest pain has mainly gone but my bony back rib ones are very sore if I don’t sit supported or if I walk anywhere. Will have to go back to the painkillers again after abandoning most of them.
Lynn - you sound as if you’ve done very well and hope you get home soon. I also hope your mobile bill was not as horrendous as mine - think I need a loan to pay it off!!! Not quite sure how bad your leg is still - that must be a concern and painful if it’s a nerve trapped.
Debs - well done to you and hope all is going well now you are home and are resting and not doing whatever it is you’re not supposed to be doing.
Sammy - brave of you to take H that distance to see Lynn but I’m sure you kept everyone entertained.
Claire - hope you are OK. Do you or hubby have to work over christmas?Trace - are you working as well? Hope you are feeling mentally better.
Was doing well without the oxygen but I think the school hall had too many people and not enough oxygen so ended up using the portable oxygen in the school hall and trying to remember to breathe through my nose so I didn’t send the alarm off peeping.
When we arrived in the school foyer, there was a long queue and I was wearing my oxygen and hubby was asking people to let us through and some parents attitudes really stink - they wouldn’t move. Eventually, the offfice staff got us through. What do people think? Do they think I’m making all this s**t up and ‘pretending’ to be ill - just cos I don’t look ill. It really made me angry and suppose we will go through the same tonight.
Hope all your xmas shopping is done now etc.
Kate
Season greetings to you all
Well home for 3 days now. new boob is looking rather good, the shape seems to be spot on, will be better once swelling settles, tummy is still on the sore side with one hell mother of a scar but still a very neat one. Had good old soak again this morning in the bath and managed to get the last of the dressings and tape off and then chilled out on sofa. have nearly watched the whole season 6 of 24 in 2 days. district nurse visited yesterday and removed stiches from new belly button and seeing PS christmas eve at local hospital clinic. have decided to have quiet christmas at home this year as still walking like an old woman on a zimmer, PS said it will take a little while to stand up straight as he only just had enough skin and had to go quite deep so skin is very tight and he doesn’t want me stretching scar. I cant beleive i have a cleavage again, i keep looking down and stroking it.
Kate dont you just hate trying to get in and get a seat at school productions, however would have thought the parents or even the school could have been a bit more thoughtful with your current situation and let you in slightly early, I have missed my daughters, was on tonight and last night and just could not imagine trying to sit still for 1 hour in those uncomfortable benches or stuffy halls that always still stink of school dinners and make you sweat buckets. sons is tomorow, carol service, afternoon and evening, might try the afternoon one as dont think it will be that packed and i can shuffle a bit when they are singing. howevr have found out one of the school gossips knows I was in hospital last week having op (had tried to keep quiet round here) so wanted to walk into a christmas carol service without the stares and silence for once so will see how i feel tomorrow. Why do parents at school cause so much unnecessary crap.
Trace, I am jealous of your plans and couldn’t agree more with sam, never give up on the thought, you may come back from your travels see how much your mates have aged and clear off again, or it may make you more determined to be a mum, just continue stacking up those clear years and scans for the moment and visit those wonderful places. if there is one thing i have a little niggle with in my life its not travelling when i was younger, me and okh got very close once to going off to australia but took the sensible option and put our money as a deposit against a house instead. never mind we cant go back, so have new plan of action, we do a different city break each year, this year was new york, next year i want to do paris and moulin rouge and then quite fancy rome. at least with city breaks I can get a sitter and still have holiday with kids.
anyone know when lynn is coming out?? was her corset fetching??
claire why aren’t you posting??
have to go back to lie in ball on sofa.
love to you all Debs
XXXXXXX