Debs -hope your little one has a good birthday.
Well, hubby was obviously feeling very guilty about friday nights episode etc as when we went out on Sunday, he bought me a necklace without me knowing to say sorry!!
When we were out yesterday and sunday in my scooter, I kept giving people and myself terrible static shocks - must be the wheel material!!
yesterday, we had to do a little shopping and buy youngest a pressie for being good in hospital last week. The battery was nearly flat as hubby hadn’t turned it off overnight and it was he who put it away. Therefore limited how far we could go. In the end I had to send odest and youngest son off to other end of town with £20 to buy a pressie whilst me and daughter sat in BHS having coffee and cakes. It really was the most revolting coffee and wished we’d gone to Starbucks instead!!
Infact the static electricity was so bad a blue spark came out of my finger when I pushed the lift button!! Good job I don’t need oxygen now or we might have gone ‘bang’!!!
Have heard back from Monkey World in Dorset - my friend wrote a letter explaining my situation and we are going to have a 'special ’ day out there in march. We will be taken round by Golf Buggy which should be interesting in itself as it is so hilly!!
Had a very strange bad chest pain around mastectomy scar yesterday evening which lasted about 15 mins - don’t know what that was about but hope it doesn’t come back.
Hope my bloods will be OK for chemo this thursday as I have several large mouth ulcers which usually happen when I’m neutropaenic.
Just booked tickets for a football match - will be the first time I’d have been to a proper match
Mum here so that is helping me cope with half term - got exhausted having a shower last night!!
kate
Kate you sound like some kind of sci-fi super hero with strange powers! that will impress your youngest surely.
I have been borrowing my steves coat and have noticed I have a lot of static when pushing road crossing buttons etc
must go as supposed to be doing dinner
xxsam
Hi ladies
firstly Kate, i’m sorry i feel such a naff friend as i did’nt know you’d had such a s****y time and i would have sent you a message of some sort or called you for a natter. it was nice to read your lovely emails since then tho saying how things are better and that he does care after all. hope the necklace was nice, how sweet was that? My RH never even brought me flowers when i was ill!! I’m sure your hubby will be fine, and i’m sure he will do alot more than you think as he wont have a choice. Monkey world sounds great, i’ve never been but i’ve heard its really good.
I’ve been busy with work again, and trying to launch this virgin vie thing too. i’m going to treat it as a hobby tho and not as a business. got a party to do friday eve so see how that goes.
Got mu cousin coming down at easter weekend and have managed to get top seats for a new west end show called into the hoods, adaptation of into the woods but all the music is r & b, motown and hip hop type thing, the kids will love it. my cousins 2 girls have never been to London as they live up north so doing the sights too whilst we’re there.
Had to see my surgeon today with my friend with the BRACA 2 gene to discuss prophylatic mastectomys. He’s advised her to do it but shes not ready to do it yet, shes petrified but shes knows there is something in her head telling her she needs to do this. she had her ovaries out a few weeks ago but had a bad time in hospital so think that is putting her off. she lost her mum and her sister and her other sister has developed it so she knows what its all about, bless her i really felt for her, its a tough descicion but better to have the choice than not eh!
Whils i was in hospital last week i read my mastectomy report and on there it said that some of the tumor was grade 3! i always thought it was a 2, it had vascular involement, lobular hyperplasia and something else going on in the upper outer quadrant, when my lump was in the lower inner! scary really, glad i had the chemo now. also said i was borderline for herceptin, wish i’d known that too as i would have liked to have discussed that a bit more. One thing tho is that its helped me to make up my mind about having a prophylatic on the left side now. if the right was effected in that much of a way when i only had a little lump, what if i had left it??! its what you dont feel that can be the worst, the grade 3 lump was the one that i could never feel!
Anyway, having probs with my mobile now too, cant top it up! registered my bank cards and called them 5 times but still not accepting my card, theres nothing wrong with my card as use it all the time. its such a pain as i have no credit!
Better go supposed to be sorting out bank stuff and other boring things, like washing up!!
Oh, fed up with diet, now putting it on again! its that red wine, blame it on an aussie!!
Speak soon girls and sorry for being a naff friend
Claire xxxx
Couldn’t have chemo as neutropaenic which is what I thought as have so many mouth ulcers. She is he new onc and so is going to discuss it with other onc as to whether should have lower dose or neutralsta/gscf injections.
going to have rads to spine now and brain scan as have strange headache on one side which is a bit scary.
Just realised didn’t have line flushed so will have to do that myself in a minute.
Hope all well with you
Kate
Evening ladies,
Claire I did london yesterday with friend and our 2 daughters, we tried to be different this time so walked them to buck palace, then carried along to harvey nics and harrods (checked out all the designer shoes jusy incase we win the lottery) back into the park to royal albert hall and memorial then to nat hist museum, dinner in planet hollywood (no problems with kids) then another walk around china town then watched wicked, it was fantastic and one I would recommend (and very cheap tickets @ £15 each) we had a fab day but am rather knackered today as we eventually got home at 12.45am.
Noticed in the hood the other day when checking out other offers you will have to let me know if any good as we love going to london and sometimes like to go without the girls so we can eat and drink where we want.
Kate hope the mouth ulcers go, I had them awful when I was hospitalised, I had the neulesta injection on chemos 6,7 and 8, it makes you ache but I never went below 1 on it, so managed all my treatments as planned. Good luck with rads and scan, fingers crossed headaches are stress. How is RH, is he still making amends and bought the earrings to match or slipped back to old habits, agree with claire, think he can do more than he lets on he’s probably scared of stepping on your territory.
Right having a dilema, my 40th this year, party or moulin rouge with girlfriends?? cast your votes now. trouble I am having is birthday actually falls on a saturday, do I want to spend the day cooking and the night with mostly good mates/family but the usual couple of crap inlaws and old fuddy duddy parents friends or with my really close girlfriends in gay paris, had it been mid week it would have made life so much easier, family meal then weekend to enjoy.
Hope you all have a good weekend, Love Debs
XXXXXXX
Hope you are
Debs -glad you had a good time in London. Birthday dilemma - I think the only tactful thing to do would be to have dinner out with parents/inlaws etc one weekend and then go to Paris another.
Claire - that’s not fair that they did not tell you the truth about your path reports at the time. Hope you’ve got yopur credit sorted out on phone.
Lyn texted me to say she’s back. Presumably, she’s texted you all too.
Had a really tired and crappy day. Spent a lot of time in bed. All my joints and bone aches - wondering if my bone marrow has woken up to the fact it needs to produce some wbc!! Felt really low as so energyless and can’t really do anything. involving energy. I supervised daughter making bath bombs yesterday and older son making apple cake but couldn’t even do that today.
Seem to be having trouble swallowing again so really need that chemo. The pain inm y chest has come back and I can’t work out if it is my back or front that hurts the most.
Yesterday at 255pm, realised I was supposed to be at rads planning at 3pm. Phoned them and they said to go down anyway. Mum paid for a taxi as knew I wouldn’t get parked and felt unsafe to drive. Got rads on wed now and then chemo on thursday!!
Supposed to be going to Southampton Ladies Day match on saturday with in law and son and his youngest daughter -hope I’m up for it if only had chemo 2 days previously. Money going towards BCC and they will have a marquee there - hope it’s not too far fromm my seat or won’t get there!!
Husband doing lots round house so that’s good.
Sammy - hope you are OK
Sent Lyn a depressing text as I felt so awful then - will have to text her back to say I do have some good moments but am definately on the downward spiral and rather scared. Don’t know how Moira managed to work such long hours - I can’t even stay awake for more than about 6 hours at a time.
Must go to bed
Love Kate
Hi all
Kate glad oh is still making amends or is he just now realising he has to do it. its probably best to just let him get on with it in his own way, after all it must be better that he buries his head in house work rather than the morris minor, I know its different scenario but I had to let OKH do it all over christmas and realised I had to sit back and stop being so fussy and let him and kids get on with it, they all mucked in and did a reasonable job.
I didn’t get a text from Lynn so you must be special although may send one welcoming her home.
Soon I going to run out fingers, but again everything crossed rads and chemo go a head this week and do their job.
Should Trace be back now, think I will send her a text too, we have heard from Claire, but where is Sammy, might have to text her aswell.
Had to really yell at kids tonight, totally p*****d me off, OKH out as spurs in the cup which I dont mind at all as how often does that happen and still out as now celebrating, so I thought I’d be a good mum and cook a lovely dinner for me and kids with an even better pudding and even bought a bottle of fizzy and all they did was moan, squabble, poke and tell tale on each other, then son dropped a dish on kitchen floor that splashed everywhere so I had mad screaming fit and then they neally went to fists so another mad screaming fit and sent them to bed. and I get the looks to say I am the wicked witch never mind them being the devil children. back to school tomorrow, thank you.
I’m off, back to routine tomorrow morning, think the worst bit is making school lunches and snack, school has now decided to ban crisps which is a pain as I allowed mine 1 bag per day as their mid morning snack as my 2 always eat fruit when they get home before dance and football and again for supper. I know they are going on about health issues but will they tackle the kids arriving eating sweets or those being handed a bag when they get picked up or while I am on my soap box re-introduce competitive sports days and proper exercise, I doubt it.
nighty night, Debs
XXXXXXX
Hey girlies…yes i am back - have sent u all a joint hotmail with my adventures and misadventures!!!
Now Kate, i seem to remember telling you all to behave, zapping people with blue electricity and blaming ur wheels isnt behaving!!!
Seriously tho, sorry to hear u have been having such a crap time i had neulasta throughout my treatment and it worked a treat i didnt have any side effects from it all and wasnt neutropenic once so defo worth giving it a go if they are offering it to u… How are the headaches, did you get your scan??
have to say i agree with debs about rh, think maybe he is overreacting to the little things as is unsure of how to handle the big things…sounds like he is working things out tho and am sure he doesnt mean it, the necklace sounds great, what a nice suprise…monkey world sounds great too as well as your thing at weekend - was that weekend just gone or next one coming, am a bit confused!!! either way enjoy it…
Lyn glad to hear ur back, hope ur still in one piece. How u doin and how u feeeling???
Debs - Oh My God, there is no dilemma and no contest,sorry but i totally disagree with kate (sorry kate) GO GO GO, what is there even to think about, youll have a family thing of course u will - but let that be after,god how much do u deserve to do what u want and really let your hair down somewhere totally different…Go or u’ll regret it - noone will mind just GO.
Phew rant over!!! Good to hear about your hubbies job really am pleased for you all, about time some of us had some good luck.
Sammy hows the eye??? Hope its improved and u didnt manage to infect little H. If uve read my hotmail then ull no i have some time on my hands but unfortunately not really able to get about!!! Let me no when ur free…
Clare, big decision but i no you were thinking along those lines anyhow. Glad u seem to have recovered from the other surgery. Hope the virgin vie stuff going well…
Ok will let u read hotmail to find out what ive been up to as really cant be bothered to type it all twice! Although i am pretty immoblie at moment (who would have thought it just because of a damn foot)! i am gonna have to get myself off to edinburgh next week as G has foned me in a total blind panic as his mum has just been diagnosed with brain stem canacer and there is virtually nothing they can do except chemo to shrink it and prolong her life a little. Unfortuinately i no this type isnt good, so broken foot or not am going to spend a few days with him as he has asked me to…how can i say no…
If anything major happens text me, if not i will catch up as and when seeing as i will be offline for a bit…
Look out for headlines of girl with crutches falls under a train!!! ha ha ha…
Welcome back Trace and blimey, read your email, Mexico sounds fantastic, you sure sound like you had a wonderful time I could just so vision the snorkelling it reminded me of my honeymoon, cannot beleive you have done your foot yet again, wasnt you on crutches last year too? How was wearing the swimming costume and did you get to match all your outfits in the end, at least you can go stay with G and give him some moral support, how is your other mate doing, hope you dont get too much coming at you again.
Well I think Paris is on for my birthday, did the party for my 21st to please parents, was pregnant on my 30th, mother and sister in law who I dont talk to will interfere and p**s me off, have been on expedia, fantastic deals, fly out of local airport middayish, 1 nights hotel accom and late flight back sunday (so roughly1.5 days + one night) and coming in at around £137 + moulin rouge on top. OKH fine with this as he said we can have family meal on the friday, breakfast with the kids on birthday morning and home sunday night + he doesn’t have to take anytime of work to look after the kids. Already have a party frock and high heels so probably much cheaper option too.
Have another check up with PS 10.3.08 so will see what he says about tidyup op, will really puch for asap as recon still quite bigger and I am still having to be careful with what I wear, also hoping he will let me back to areobics perhaps the jumping around will help gravity, am still getting out on big walks but not quite so much as back at work.
Am definitely texting Sammy tonight as not heard for a little while.
Love to you all Debs
XXXXXXX
Sorry guys have been busy and trying to limit screen time due to eye, its no better in terms of vision so will book an optiotions next week.
Have my next 6 month check up feel really positive that it is another 6 months ticked off ned.
Trace cant believe your foot you work-shy individual ( I can talk I am working as little as pos at mo) will text you and come and see you soon hopefully.
Kate darling good luck this week
debs good decsion I for one will be having a massive parrty when I get to 40
love to you all
xxxxxxxxxxsam
Debs - that sounds brill idea for your big birthday. Have lots of fun.
Trace - hummm - are you really that workshy or even more accident prone than me!! Mexico sounded wonderful - very jealous.
Sammy - perhaps you should ask to be referred to Moorfields Eye Hosp - does it still exist?? It doesn’t sound right and I thik you should see an expert. They used to have an A and E dept so it might be worth checking them out as they are the experts.
Lyn - will have to text you as think you are offline
Claire - lost the plot what is happening with you and too high on steroids to check so hope you are Ok.
Another eventful day at chemo. Concern re my swollen ankles - thinks I’m going into heart failure - but is it the herceptin or is it tthe tumour pushing on my heart or has it def spread to my lymph system in my abdo/pelvis which was a query last CT. Having echo to check. Very scary cos if I’m in heart failure, I can’t have herceptin or tykerb or other recycled chemos. Now having chemo 4 weekly as bone marrow can’t cope 3 weekly. Due to finish end of April so that would be that as rads would be difficult due to it going through my heart and lungs and position of tumour.
Had rads to my spine yesterday and spent yesterday evening feeloing like i had a red hot poker in my back so took my new friend - the long acting morphine MST so quite happy apart from hallucinating in night!!
Tomorrow - brain scan so again very scared.
Will now try to dose myself up to sleep as don’t want to think.
When are we meeting again?
Katex
hey there
Sorry didnt text all cause wanted to catch up on everyones news i have no idea where to start on here i havent been on for months havent been able to face it to tell you the truth!
I will read through and post something better then the self centred shite im about to just need a little advice…just got back from hospital i have to go back onto chemo cause that lymphnode has grown so they want me on taxotere i burst out crying first time ever cause im still getting over op and coming off mst blah blah and had a f in crap time in ireland no way im going away for 3 weeks ever again.
Anyone had taxotere? would have text you kate but know you have alot on your plate too- fingers crossed for brain scan hun x
Oh got something on kidneys too which sent me slighlty loppy and i started to rant about moira and they way she declined after whatever was going on with her kidneys which was fun for everyone!
Sorry this is such a crap post i have no idea what to do with myself no idea at all and i was so looking forward to getting to touch with everyone and chatting.
Anyway love to all and hopefully ill get a happy 10 secs and post…esp with another oncology appointment coming up next week…do you think i should just jack in work?
Thinking of you all always lynnx
Oh Lynn, what a frigging time you are having, thought you would come back from ireland all refreshed, guiness beer gut and gagging to get back to work, so sorry mate.
I had 4 taxotere with FEC and herceptin with initial diagnoses, this was the one that kicked sh*t of my nuetrophils (and hopefully the nasties that had started to escape), its supposed to be the big gun and packs quite a punch.
It didn’t make me sick like the FEC, just zapped my energy so instead of going out walking I had to rest more when the kids were at school, my tongue felt like I had scolded it, not sure if down to the chemo or cold cap but infected hair follicles (on 3 rounds) and sore feet. But i still managed to get out and about, took daughter to london and girls aloud concert, helped at her dance shows and went to see take that, these were all a couple of days after chemos 6.7.8.
Remember Moira didn’t let on to us the full extent and kept putting off taxotere, which was her choice, so please dont compare, although must admit at the mention of kidneys I immediatley thought of her too. As for work, down to you, maybe best to make decision after next onc visit.
Kate I had swollen ankles on taxotere and herceptin but echos were fine, think it was more the chemo but took a while to sort it self out. Chemo 4 weekly sounds better option on your WBC, Good luck with the scans.
Love and hugs to all, Debs
XXXXXXX
oh crikey girls
kate hang in there hun-
lynne NEVER apoplogise about coming on here and moaning- LET IT OUT girl- sorry ireland was not good. Totally agree with debs, and make sure you get the boosting injections, gcmf or neurolasta. I had less problems on tax in some ways, did have some sensation loss in feet and hands thro, but if you get that bad they can adjust the dose. If you dont need to decide about work put it off till you have to.
Sending you huge cyber hugs in a way that moira would not approve
got to go but please phone if either of you want to as in tonite
sam
Oh Lyn - thought you would have good time in Ireland so sorry it was so awful.
don’t know anything about benefits when giving up work -expect you know more or know people who do. I would talk to benefits advisor from macmillan and find out about any pension if you retired early.
Sorry to hear of lymph spread in chest and kidneys. Is it your kidneys in rouble cos of the biphos or a new growth - didn’t read your post properly.
I was a complete mess on taxotere and only had about 10 good days out of 21 but lots of others are fine especially if they have neulasta or GSCF so push for that.
You and moira are totally in a totally different league. She waited 3 months after her liver mets were discovered before she started capecetabine when they wanted to give her taxotere then if my memory serves me right and at the onset of their discovery they were already widespread and that was about 2 months after her bony mets were first discovered so a lot of time was wasted when she was already very ill. I think she knew that from the onset but was deternined to do things her way.
Remember, we’d been emailing each other from Oct 05 so a whole year before we met in exeter so I knew things or guessed things that she wouldn’t talk honestly about (apart from our black humour moments about suitable music for funerals etc) She then kept putting off chemo and ultimately became too ill to have any chemo. That was her decision and I know ultimately her life expectancy wouldn’t have been long but it would have been considerably longer if she had taken the advice she gave out but Moira was Moira and that was made her so special and i miss her dearly.If I was in her position, I would probably have done the same thing but my life revolves around my children so fight to stay on my chemo for as long as possible to be with them. There have been lots of moments in recent weeks where I’ve felt like downing the 150 dihydrocodeine tabs I’ve got but I wouldn’t do it as I want to live for as long as possible but if it was just hubby or me or just me, i think I would have given up chemo a long time ago and be dead by now.
Lynn - make sure you keep in contact with us either by text or email or here. we can always cascade info tosave text costs. It doesn’t matter how crap i feel, if someone else feels bad I’ll always listen day or night as my mobile is always on - apart from in radiotherapy or xrays, of course. It acts as a distraction apart from anything else. You are not alone - we are all here and you seem to have a lot of supportive friends -make sure you use them and don’t bottle it up.
claire, Trace and Sammy - sorry ignoring you again but Sammy what are you doing about your eye - it concerns me - nag nag
Off to footie tomorrow - think I will take a cushion - sure I’ve got bony mets in coccyx now!!
Love Kate
still doing short posts
Kate you say the right things lynn please listen as kate knows what she is talking about. Kate you are such a fighter for your kids. Blimey I hate this disease so much.
Your nag made me smile kate as it is so typical of you! take a hot water bottle as well as it is cold today
xxsam
Well I enjoyed the footie even if it was a waste as it was a draw!! It all seemed so slow to me and they kept watering the grass so the players kept falling over!! You can tell I’m no expert at this footi thing!! At least our goal was just where we were sitting so I could enjoy that but think I’ll have to go to the opticicans too, Sam, as my long distance eye sight is not as good as it was - age related as all my friends have the same problem.
Ate a huge chinese meal last night but today have felt awful - fluey and tired. Think some of it is due to drop in steroids and is how i felt last time I had chemo.
Went to see m-i-l and s-i-l and her baby who was actually awake this time so the children loved that. Then I felt so cold and tired I had to come home back to bed and slept for over 3 hours so missed my friend’s mothers day usul celebration. As there were 8 adults and 10 children, think I was better off in bed!! Hubby came home with some lovely chilli for me and some tirisumu so didn’t do badly and even managed to watch dancing on ice!!
Just booked tickets to go to ballet with mum in 2 weeks time as her mother’s day pressie.
I got 2 CDs and lots of choccy and flowers.
Hope you all had good a good day and hope Trace’s foot is improving.
Kate
Forgot to say - the radiologist woman as in the operator and not the doctor said she could see nothing obvious in my brain so hopefully they will detect nothing but since the consultant radiologists have missed so much will feel happier when i’ve spoken to the onc and he’s shown me the scan!!
Lynn- I had a really crap time on taxotere and only managed 4. Other people on site were given neulasta or GSCF and they all coped much better so if they offer you taxotere push for the wbc enhancer drugs.
Off to bed now
kate
Hey guys
Oh Lyn honey, dont think i can add anymore than what Kate and Debs have said - they give good advice so listen to them. Im here to if you want to give me a call, sorry it has taken so ong to get online. Debs did text to let me no what was happening (thanks debs) but was stranded at my flat for the weekend and unable to get anywhere. My mum and sister are home now thankgod (and in one piece) so will be able to get about a bit more hopefully…
Kate glad the scan looked ok, dont blame you for waiting for the onc opinion but praying its the same as the one you already have. Ballet sounds good have never been but would like to, am off to see billy elliott sat, have been told its good and thankfully seats in the stalls so crutches wont be a prob.,…
Debs birthday plans sound good, when is it and when do u go???
Sammy moorfields is still there and i agree with kate get it checked out by them, cant understand why you werent referred there sooner, especially if you are still having probs.
Claire hope u ok, how was the vie thing?
Am not workshy i love my job and wish i was there. Have spoken to manager as dont want to be off so they are gonna chat about it and thinking about getting me cabs into work and sitting there!!!
Will be online tomo then off to edinburgh to see g and his mum wed, think im gonna come home sat. Gonna take olive and my scarves can you think of anything else useful she might like???
Thanks for asking about friend at work debs, but no hes not good, he called me in mexico and scan shows spread he is now being referred to barts for more treatment.
Love to you all. xxxxxxxxxxxxxxx
Hiya all
Thanks for advice and texts I will try and get in touch more but im sure you’ve all gone through the depressed shutting people out slighltly thing…i think i havent realised how down i am! Its really unlike me not to stay in touch but ive took to ignore my phone and everything…
Forgot to say whilst I was away in Ireland my grandad in brum with lung cancer died…the funeral was last thursday but i couldnt bring myself to attend my gran understood and my parents and sisters did not want me to attend due to the stress of it all…on top of that my grandad in irelnad who had breast cancer is getting results today he had a shadow on his lungs…he celebrated his 5 years only 3 months ago and was happy he was coming off the arimidex so stress on family back to full again.
anyhoos Im making notes of what to ask oncologist thursday, I have three friends attending with me everyones fighting to come which is nice its the same girls who were with my for my primary dx they took me out after the results and got me drunk bless. I will ask about the Neucasta and GSCF thanks chick for telling me about that I was looking into immune boosting things again, im trying to see it as another hurdle that may actually give me some sodding rest for a while well heres hoping hey! Im bit worried that my body is still trying to get over back op too?? Brace off on 14th I hope! I cant wait its driving me nuts!
Kate what footy did yo go to hun?? I was going to go the Villa reading match but i had to sit with reading fans so and we beat them so would have got a beating lol
Are we due to meet up?? I get my new car friday so on the move again thank f! 
got to run got another appointment with doc i stpped taking mst and the side effects were awful i felt like amy winehouse…cluckin!
Love to all xx