hope you are keeping well.and your hands and feet are keeping in one piece
..I have fought numerous 'wars' with my husband over territory who is in charge of the kitchen, who does the shopping, what time does the cooking have to be done, how do you clean up etc. etc., the key is to get your fights in up front and then enjoy your time together! When I had my primary I was off for nearly 8 months and by the time I was ready to go back to work we really missed each other. I hope that you have a great time together and can have some nice days out whilst he waits to start the new job,
Hi girls, Back from my hols in Spain - had a great time. Boiling hot - in the 30's every day. We had long 'siestas', lounging around reading in the shade, then went out and about in the afternoon/evening. Barcelona was wonderful - will have to go back and see all the rest! Now my youngest is back to school but the two elder ones have finished exams and are lazing around the house, so it feels like the summer hols have started already. I'm trying to keep that holiday feeling (on the days I'm not at work!). Got my results back from the genetic testing - I don't have the BRCA gene. Great news, especially for my kids and my sister and her girls. What a relief. Seeing onc on monday but I haven't had my usual CT scan and MUGA scan, so he'll probably send me for those soon. Having Herceptin on monday too. Feeling a bit exhausted today - probably cos I went swimming yesterday. Just can't get going with anything.
How is everyone else? I've had a scan through the posts to try to catch up but there's so much to read. Kay, sounds like you're struggling with your feet. Cathy, hope you've been having a quiet time at home and no jetting off anywhere for a bit. Dawn - haven't heard much about you, hope you're doing okay. Beli - hope you survive your hubby being around the house. Tracy - how are you keeping? Everyone else - please report in so I know how you are! I was really sad to miss the meet at Dawn's, and I can't make the next one as I'll be on my Odyssey holiday....yikes! Don't know what to expect, but I'm really looking forward to it. love to you all, hope to meet up soon Jacquie xx
Good to hear that your holiday was such a success - sounds lovely, particularly as I look out of the window today at the rain. Hasn't been like that all the time you've been away though - there have been some lovely days.
Sorry you can't make the next meet at Dawn's - the last one was really good. But your Odyssey holiday sounds fantastic - everyone I know who has been on one seems to have really enjoyed the experience. I haven't put my name down yet 'cos I'm adjusting really to the new chemo regime. All going pretty well - got some good tumour marker results after the first cycle (down from over 400 to 306!) - but have got sore feet and hands. Onc says if all goes well though and tumours reduce to "manageable" size he will look at reducing the dose so that I get fewer side effects. So that's good. Would hate to think I won't ever get up a Lake District fell again or finish the North Downs Way!
What else? Had a lovely day last weekend at my youngest's graduation - sun shone and I was a really really proud mum! SHe's now in Portugal but back late tomorrow for the summer - will be flat hunting in London though ready for the autumn.
Will let others give you their news. Good to have you back posting though!
Kay xx
PS How's it going with your hubby around all the time, Beli?
Glad you had a good time in Barcelona, we really enjoyed it and thought it was great as something for everyone, museuams scenery etc, I loved being by the sea side, I think thats one thing I regret , used to have marvellous sea side holidays when I was a child, and at university and then after that never went again.
Have been reasonably well myself . Only really feel my bone mets if I walk for a long time, I even went to Germany again for work, every time I get on a plane I think how ridiculous it is that I can still travel with insurance simply because I work for a company that gives me that benefit, I am trying to make a claim on some work related insurance for my illness as well, has been a huge hassle and I very much doubt anything will come out of it, but still have to try. Have nightmares about the whole financial /insurance and savings situation. Have done some work on this and I think I need to go to round 2.
You must give us full update on odyssey holiday - but I can't believe that they will allow wifi internet access on the holiday. Would like to do it but couldn't quite summon up the nerve..I think I was afraid I wouldn't get it and would be out in the field with no escape.
Kay hope you get full benefit of the xeloda and then can get on the lower dose. Hope you have enjoyed rainy sunday, truly awful driving conditions. Thanks again for your mail. Beli - do give us update on husband at home!
Dawn- you are quiet, interested to hear about you OHs new business.
Tracy -Let us know how you got on with inc, thinking of you.
Jacquie - Glad to enjoyed your hols its a shame when they are over and we get back into the swing of everyday life don't exhaust yourself with doing to much.
Cathy - You are amazing doing all that travelling.
Kay - Sorry about your feet and hands one of the other things I have tried and don't laugh Maunka honey I put in on my feet and also take a spoonful everyday, I know its sticky so I put socks on its worth a try.
I have given my OH a list of jobs to do which today he's has been painting the lounge but he wasn't impressed. We are going off to Devon on Thursday to see a friends we are back on Sunday then off to Ireland for a week travelling then maybe continue on with the jobs.
Not sure about the Manuka honey, Beli - sounds very messy!! Though must admit am willing to try anything! Hands are particularly bad this cycle, whereas it was feet last one. Have got an acupuncture appointment next week so will see whether that helps - onc wasn't at all convinced but it can't do any harm and the physio who is doing the acupuncture says she has had success with some people with foot and hand syndrome.
Keep that OH busy, Beli! ANd enjoy your travelling. Have never been to Ireland and would love to go.
Thanks for the email, Dawn - you've been very quiet recently and I've been wondering whether you were ok.
Any news, Tracy, from the onc?
I'm really keen on the idea of the Odyssey holiday, Jacquie and Cathy, but feel with my sore hands and feet at the moment it isn't the right time. But must book into one as I know it will be several months away - and who knows what might be happening by then!
Supposed to be working from home, so had better get back to it!
hi yes , he still wants to keep me on xeloda and megace eventhough the markers have risen and enzymes ! he said becaused they are not jumping up dramatically just slowly this is the reason . also he said i look so well , cant feel the liver and my billirubin is fine ,just need to watch carefully. not sure what i feel really on this , nervous i guess but not toooooooo bad . any symptoms and must go down straight away ...... love to all Tracyx
oh Tracy - glad to hear this, its such a balancing act isn't it...we don;t want to hit the hard stuff too ealy, we want to stay on the more tolerable stuff for as long as possible...
Think this is good news - though have to disagree with you, Cathy, about xeloda being "more tolerable". Sorry - have really sore, painful hands and feet at the moment and am in a bit of a grump! I'm certainly finding xeloda tougher going in many respects than FEC or Taxol. Can't remember though whether you were also suffering from hand and foot syndrome, Tracy.
Do you know the actual figures for your tumour markers? That might reassure you if you know that they are not that much higher than the norm.
oh eek, Kay sorry, sorry sorry ! and Sorry about your feet and hands....I hope you can get a dose reduction, but given good drop onc wants to push for more I guess
I guess I mean one hopes that xeloda is more tolerable. Its funny how we are all so different as I actually found Taxotere not so bad and everyone says awful, but I still have nightmares about FEC.
Don't apologise - just me being a bit of a pathetic grump this pm. Had got blocked in in the car park at school and had to traipse around looking for the "culprit" whilst really just wanted to sit down with a cup of tea, before embarking on a report I had to finish! And by the time I got home feet and hands were throbbing terribly. Think I was also still smarting after a conversation with a colleague yesterday who absolutely insisted that because the chemo was in tablet form, it couldn't be as "strong" or have the same side effects as if it was given IV. Why is it people are so keen to express their opinion which frequently is based on absolutely no knowledge? And why don't they then listen and learn? Keep getting lots of unhelpful advice about the feet and hands as well - though probably that is all well meant.
Obviously I still in a grump about it all!! Need the end of term to come I think.....
Onc doesn't want to reduce dose at the moment until we are sure the tumours are shrinking and everything is more "under control" - and I am with him on that one really! Psychologically really need a good scan result. But will certainly have to reduce at some point cos can't keep going like this indefinitely.
Think all these treatments vary hugely between people - and xeloda is probably more tolerable than some treatments for many people. At least taking it at home in tablet form makes it much more manageable. ANd all of them seem so much easier than the chemos of the past and more effective, so perhaps I should just appreciate that - cup half full again?!
Hi All, really good to hear everyone's news. Cathy, I'm in the middle if writing stinky letters to my life insurance co as they say i'm only covered for permanent disability i.e. loss of an arm, leg, sight etc. I have today found two annual statements that mention critical illness, so i'm a bit more hopeful now. It's a drain though, isn't it? these things take so much time and energy. Beli - sounds like you're gadding about a lot. Enjoy it. Tracy - glad to hear they're happy to leave you as you are. You can't help being a bit nervous though - I often feel like i'm just waiting for the next bad thing to happen. Poor Kay, you do sound a bit miserable. Things like hand and foot syndrome can be so painful and affect everything you try to do, but it's hard for other people to imagine the toll it takes. I've been grumpy and exhausted for a week now, and yesterday realised I've got an ear infection and actually been in some pain. I'm on Anti-b's now but it hurts so much, day and night. I'm not much fun to be around. Had a nightmare day at the hosp on Monday. Went for Herceptin and to see doc but i needn't have - they had nothing to tell me. I was there at 10.15 and got home at 20 to 7!!! I had 2 hours of Herceptin and that's all I've got to show for it. It took 2 and a half hours to mix up the herceptin and they wouldn't take me 'off hold' until I'd queued up to see the doc, even tho all my heart scans etc were up to date. Ridiculous. Okay better go and cook some tea - everyone's going out later keep up the good work Jacquie xx
Feeling much less grumpy today - feet and hands seem slightly better and throbbing less. Don't know why as I don't finish the cycle until tomorrow, so in theory should be at their worst. And got some things that have been nagging away at me at work, completed today. ANd they are giving me a laptop to help me do some work from home - get it on Friday!
You had an awful day on Monday Jacquie. Hate the needless waiting around. And at least you have your anti biotics now. Years since I had an ear infection but I remember how miserable it was. Hopefully the anti-bs will kick in quickly.
Hope everyone else is doing a bit better than me and Jacquie! Anyone doing anything fantastic this weekend? I'm off to sister in law's in Humberside for my f-i-l's 81st birthday. Have mixed feelings about it all as think I could just do with a weekend spent with my feet up being pampered! Sure someone must be doing something exciting - when are you off to Ireland, Beli? Daren't go searching for your last message as I'll probably lose this post!
Jacquie -sorry you have had bad day at hospital,I think sometimes they think that you have nothing better to do than wait around at the hospital for something to happen. After a certain point it begins to be torture as you so much want to escape from it! I had appalling ear infection at the beginning of the year - and my husband just went to A and E with one about 2 weeks ago as he was in so much pain...he is better but it took three to four good days on the antibiotics.
This weekend I am spending the time cleaning up the house from the builders. I am really hoping that they will be finished on friday. We have had a crew of polish builders in renovating our bathroom for the last month. They have been absolutely charming but I think we have all had enough of each other....it was only supposed to be a week and a bit but some disasters on their side made it a lot longer.We decided to do this long delayed work on the house as I wanted to see the house in reasonble shape and my husband decided he needed me around to be able to manage the builders,
So I hope you all have something more exciting planned. Kay glad hands and feet slightly better today.
Kay I saw you comments on Izzati's thread...really its back to one of our old threads which is how families can be ridiculous they can be, what did she think she was saying? Its ridiculous that we can be in this position and still have this problem with relatives,I keep having my mother saying crazy things to me which basically imply that its all my fault, or that i have been the victim of gross medical negligence. Unfortunately neither are true. Sorry that you have to have this hassle, hope your hands and feet are keeping OK,
jacquie - you must be gearing up for the school holidays, I am planning to take July and August easier and do some things at home. I find now I need to get my rest, have been through alot at work recently as its half year and I need a break.
Hope you are all doing ok. I had a long morning at the hospital yesterday followed by an acupuncture session (may help the neuropathy I am getting in my feet). Good news though in that my tumour markers have fallen again by an even bigger amount in the 2nd cycle - over 400 to 306 to 165 (ish - had a graph not the exact figure)! He said he would have been pleased with that drop if it had taken 6-8 cycles. SO he's reduced the dose to see if we can lessen the side effects whilst still continuing to shrink the tumours. He's also cancelled the next scan as feels there is no need at the moment to see what is happening as clearly the xeloda is working well for me - will scan when things begin to plateau with the markers. So all in all I am very happy (and relieved) today - long may the xeloda last for me! ANd hopefully the feet and hands will improve so I can start walking (distances that is and up fells) again and it will help the digestive problems I've had as well. ANd makes my hassles with my s-i-l (in fact that's quite a good abbreviation - silly s-i-l) seem very unimportant. It's quite a complicated situation because her husband had a heart attack but is doing very well (back at work etc and expected to be absolutely fine so long as he keeps taking the statins). Think she hasn't even begun to come to terms with it though, even if he has.
So that's me - how is everyone else? You've been very quiet recently, Dawn and Tracy - hope things are reasonably ok for you. Do you have to have a scan soon, Tracy, to check how things are going or is he relying on tumour markers?
Hope you manage to get a bit of a break, Cathy - I too am looking forward to a bit of a quieter time once the end of term comes as I am only working a few days over the summer. Is your bathroom finished now and all builders (however charming) evicted? Funnily enough my hubby and I have been talking about getting some work on the house done which we've had planned for ages (kitchen extension and refit and a conservatory), as like you, I would like to see it done and also get some benefit from it. Quite fancy sitting in a conservatory in the warmth.
And you must be looking forward to the Odyssey holiday, Jacquie - you must let us know how it goes. Still want to get myself booked onto one once my feet are a bit better (or may just do it now on the basis that they should be better soon).
If I remember right, you've been away Beli (in Ireland?). Hope that has been relaxing and revitalising - and the feet stood up to everything. DIdn't fully appreciate this feet thing really in terms of how much it affects you until I had it too.
Can't remember who else is up to what but hope all is well with us all.
Just a quick post to say i am really pleased that your markers have gone down again...such a relief and good tp know that xeloda works for you...we are off this weekend to switzerland for a mini break courtesy of my airmiles, I havent packed or got ready or done anything.
Hi All, Good news on the markers Kay - that's brilliant, you must be so pleased. Especially glad it means they can reduce your dose so hopefully you'll get less side-effects. Well I'm almost all packed and ready to go. I'm going up by train today and staying with my m-in-law in Shrewsbury overnight - that'll earn me some brownie points! We get picked up in Shrewsbury tomorrow at noon. I'm really excited but also a bit apprehensive. Just hope it doesn't pour with rain all week - you know Wales! It'll be weird being away from the family for a whole week too - the most I've done is probably 3 or 4 days before. Cathy have a lovely time in Switzerland - that sounds lovely. Love to everyone else and hope that you being quiet means you're all doing well and getting on with life. lots of love Jacquie xx
Good luck on the Odyssey trip Jacquie. A couple of people I know have been on recent courses and found it a wonderful experience. In fact they were so convincing that I phoned them up and signed up myself - so I'll be really interested to hear if you enjoyed it!