Hi - it seems as if I’ve been living with cancer longer than I’ve been living without it. I was diagnosed with primaries in 2001, bony secondaries in Feb 2008. Have managed various treatments, some better than others and am currently on capecitabine and lapatanib along with zometa infusions. This regime has been since Dec 1212 and is working really well. Latest scan showed no active cancer - the first time since secondary diagnosis, and my hospital visits have been reduced to every 8 weeks. But I feel so tired of it all. Some days I feel fine and can live a life, others, for no apparent reason, I can’t get out of bed. I go down with anything that’s doing the rounds (last week I was in bed for a week with a random virus) then yesterday I had the trots and once again had to cancel my plans and let down my daughter who I was supposed to be helping. My husband’s finding it more and more difficult - I’m supposed to be alright yet I’m stuck in bed. And if I have to eat another readymeal - why won’t the bugger cook?
Is it like this for others out there? And if so have you found a way to cope? I have fewer friends than I used to, and if I make arrangements to see them it’s as likely as not I’ll have to call it off. When they talk glowingly about how many women are surviving with secondary breast cancer they never tell you what that life is like. Talk to me someone, please!
Hi LovelyM it is crap at times isn’t it! You’ve had a lot more to cope with than me at the moment but I dread the time I’m reliant on my partner for meals and things. I’m just trying to make the most of summer in dread of what winter may bring but when your unwell you can’t even do that. Feel free to vent tho I find it helps enormously! Sending you a huge hug xxxx
Hi LovelyM, have you spoken to your onc about how you feel and the se’s you still have. Most onc will give medication to help stop these. It must be awful. I think chatting it through with onc or gp will be really useful. It might be that you need a little pick me up to get going again. It’s really hard isn’t it when you have to let your friends down.
I know what you mean about hubby cooking - I avoid it like the plaque. Also you could ring the helpline on here or the MacMillan. Both are very good and let you chat through your thoughts and feelings.
Hi LovelyM. I am in a very similar position to you in that I have been stable on capecitabine for 21/2 years. The main side effect I have had from treatment is sore and dry hands and feet and fatigue. this is worse towards the end of each cycle and extends into the week off. i am sometimes having a cycle off to recover and I do find that thois helps. I was away just before easter and had some stomach pain and headache on the last day which took a few days to recover. Since then I had a bad cough (now better) and then was ill with a temperature last weekend. i thought i was better and went to my history class mon am. I began to feel unwell and then fainted for a minute or so!!! GP thinks just a simple faint with temp but will have to discuss with onc when I see him. It has all made this cycle feel harder than previously…but i do think its important to maintain activities as much as I can and have trips meetups and activities planned…My son is also graduating at the end of July…this cancer just gets in the way doesnt it…Maybe worth seeing your GP for the once over and to check you are not depressed on top of your physical health probs. Best wishes and keepposting for a chat.xx
Thank you everyone for your comments. When I’m well I tend to forget how miserable it is when I’m poorly, and, to be honest, quite a lot of the time I’m pretty well. No problems with my hands or feet (though an ingrowing toenail is causing me gyp at the moment - it’s sometimes the little things isn’t it?). I had a period of quite severe depression about 4 years ago and have remained on anti-d’s since then. Having experienced depression I know I’m just a bit low at the moment, and that it’s just because I’ve had a run of minor infections. But I will go to the GP tomorrow to get checked out. I’ll bet you £100 he’ll just confirm that I’m vulnerable to infections and hang on to them longer than your average bear! Hats off to my husband who actually made mashed potato from scratch yesterday - did one of you have a word with him?! It’s good to know I’m not alone - browsing the forum has shown me that. Heads up, chests forward and proud everyone!