A huge thank you for the warm welcome to the 2nd club. I am in week two of my 2 week on 1 week off Capecitibine and so far so good. No side effects but I do feel very tired - is this common with this treatment? Perhaps its caused by the liver mets! I’m counting down the days to retirement and as interviews are being held for my job I find I have very mixed feelings about it all. I will miss the people hugely and I did enjoy the work but I wont miss the long journey to work (especially during the winter) but I am looking forward to doing other things. I have decided to take up creative writing, try mindfulness meditation, maybe yoga and take some sailing lessons - I’ve always wanted to so why am I waiting? Ok the fatigue might have something to say about all this but I’m sure there is room for some quality time:-)The positive messages and support that I have received from this forum has made as huge difference. Instead of feeling on the edge of an abyss I feel on the edge of a very interesting and exciting journey. Years ago someone asked what I would do if I didn’t have to work and I really struggled to think of life without my job in it. I have learned the wisdom that my job is what I do and not who I am - I am finding myself. Better late than never!!
Hi Marina - I was dx with liver & bone secondaries in 2003, six years after my primary BC dx - resolutely went to work the next day and stayed in full-time employment until my contract ended in 2007. While I was also reluctant to take early retirement then (I was only 57 at the time), I just couldn’t in all good faith apply for other jobs without disclosing that I might not be able to be at work all day, or even every day . . . don’t think I would have employed me! While I thought I’d go straight in to my voluntary sector employers the following day and take on some temporary part-time assignments, I didn’t go near them for six months (and never went back to work!), and felt so much better for it. I’d become very tired at work without really noticing it - stopping really made such a difference to my energy and outlook. I’ve been on capecitabine for eight years now, along with exemestane (hormonal for ER+++ BC) and bondronat (bone strengthener), and lucky to be “stable” for several years. Hope all goes well for you with your treatment and up-coming retirement. xx
Dear Marilf, Thank you so much for your reply its does help to know its not all in my head for I really do feel well but this fatique has caught me out this time. Although I have a few weeks left at work i am taking it easy as i can. I have worked all my adult life and was worried how how i would manage financially but there is some great information on here from others. I have asked for the DS1500 form and am meeting a Macmillan benefits advisor next week. From the information I have seen I think I will qualify for DLA but perhaps not the mobility part. I can get around slowly but do get tired and a bit breathless but I believe that I currently can walk the distance required? I think I will also get ESA so I’m not so wooried about money as I was at first. That all helps with the emotional strain of the situation too. Your personal experience with Xeloda is inspirng and very uplifting and I hope you are prepared for me picking your brains for a few years yet.
Hi again Marina - do apply for both the home care and mobility elements of DLA, using the DS1500 - remember that it’s your “worst” days where you need the extra practical support: e.g. someone to help with shopping, cleaning, household chores and the extra costs of transport when you’re just not strong/mobile/fit enough to drive or use public transport. And please don’t forget other support options: disabled parking badge if your mobility is poor, free car tax if you get the higher rate of DLA for mobility, and some local authorities offer a disabled bus pass, etc. There’s a lot of info here on the BCC boards about DLA & other benefits, but you’re doing the right thing by getting some support from a Macmillan benefits advisor to help you through the minefield of state benefit relating to disability & long-term illness - they’re the experts! Also, it’s a good idea to get their help with the DS1500 form, as it’s pretty upsetting to hear that this is for those of us not expected to live beyond six months. Well, I defy any oncologist to definitely say that you or I WILL still be here in six months time - cancer is just too unpredictable for them to be able to do that. Hope all goes well with this, and feel free to ask anything you like about capecitabine - there are so many of us here who now have experience (many long-term) of this treatment. xx
Just echoing what Marilf has said. Definitely get the advisor to help you fill in the form. I got help with mine last week from the Mac benefits advisor who was brilliant. You really do need to think about how you are on your ‘bad’ days.
I’ve given here the link to the capeciitibine publication produced by BCC. You might find it helpful to read, as it includes information on the benefits and possible side effects:-
Also, I noticed you are about to complete a benefits claim form, which the Macmillan benefits line can offer assistance with. If you would like to give them a call the telephone number is 0808 808 00 00.
Hi ladies I am on capcitibine I started in September. Dont know if it is working yet, I hope to find out on Thursday. Good to know you have been on it for 8 years, that gives me hope. I too get very tired on it and also get sore hands and feet BUT it is a lot betterr than other chemo’s I have had.
nice to meet you ladies
fay x