Hi everyone-I feel very humbled after reading your stories of bravery and positivity throughout adversity!
I was diagnosed with IBC nov.2008, had all treatment going inc. herceptin and now on tamoxifen.I am 48 and I work for 25 to 30hrs a week as a Pre-School Manager; exausting enough when in good health! I have a daughter 19 at uni, a son 16 at home and a gorgeous but mad border collie-a reward for getting through treatment with the idea that he would help me regain fitness (ha ha). I am single and have been for a long time despite repeated attempts at internet dating!
On one hand I am very grateful to be alive and here for my kids but boy am I paying a price!I am constantly exhausted and have to battle through-I love my job and can not contemplate giving up but I have to take a lot of time off for various ailments; the latest being a kidney infection-its easter hols now but had to have 2 wks off previous really quite unwell-my parents came to help look after me and my 73yr old mum stayed for a week-I dont know what I’d have done without them they have been fantastic all through…
Anyhoo-my point (I’ll get there in the end) is that I spend a lot of time resting; after work for 1-2hrs and most of the evening and most of the weekend! I am sensible about dealing with the fatigue as if I really over do it I pay for it, usually with a bout of illness…Is this the usual experience? I’m not a lazy person-my job is very active with 21/2 to 5yr olds and responsibilty of running the group, and I walk my dog everyday aswell as the usual housey stuff. The problem is I have no energy left to socialise much; friends and colleagues do not seem to understand that it is not through choice that I’m glued to my bed!
I feel more isolated now than when actually going through the treatment!When I’m not going through a bout of illness which takes twice as long to recover from, I manage well, am positive and forward looking-but the fatigue and minor illness really take their toll on my physical and mental health-during this infection I have just wanted to give up, its just too hard to have to battle everyday; whats the point? I have very little social life and no partner…
Now I’m on the mend my positivity is returning; I feel more able to cope but I do need to find a way of getting more of a social life-not easy when your bank of energy is very limited!
Sorry this is not a more uplifting post! I have to say-so far, I’ve had no reccurence at all…so I’m doing well in that respect!
Is it too much to ask that I have a better quality of life? Or am I just being ungrateful??
Hi there lindabob
I’m sure others will be along soon to share their experiences, but in the meantime, I thought it might help to have a look at some of the information and advice given by Macmillan on this subject.
They have some tips and advice here:
macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Fatigue/Fatigue.aspx
Hope you find this useful.
Best wishes
Louise
Facilitator
Hello
Is it the Tamoxifen that makes so so tired? I’m just at the beginning of this IBC lark, in the thick of treatment, just finished chemo, have MX / ANC in a few days and rads to come as well as Herceptin to finish in Feb 2013 and hope tp start Tamoxifen soon, but I’m just so pleased to see someone posting with IBC four years post DX with no recurrence or mets. Thanks, you made my day 
Sorry that I can’t offer any advise, i feel quite exhausted from the Docetaxel I had, so I know what it feels like, it’s frustrating.
Christine xx
Thanks Christine!
You are doing really well to be on here in the middle of your chemo-its pretty aggressive!
Take care and get pampered as much as poss!
Linda x
After reading so many posts where people have had mets, I feel lucky not to have had any…and now I feel bad for complaining about my lot…
Hi Linda
Another ibc lady here. Not quite as far post treatment as you, so don’t know if it is common how you feel. Is there possibly anything that you can do to make your work less taxing, so you have a little energy left for fun things after work and in the weekend?
And like the other Christine said - it is good to hear from someone who is so far post treatment without any recurrence keep it that way
Very best wishes
Christine
Hi Linda,
Not far behind you. Diagnosed Mar 09 and so far clear of disease. Similar treatment regime. I don’t visit the site very often these days so apologies for the delay in responding.
I think we need to make allowances for the toll the treatment takes on our bodies. It’s so common now we forget that it’s still quite a radical kill or cure treatment regime and the long term effects are not really well documented. I feel much the same as you but am coping with fewer demands on my time and energy so I think you’re doing really well.
I have a demanding job but reduced my hours from 40 to 30 taking Wednesday off in the middle of the week to recharge. I have a dog who keeps me active but no children. I’m still usually exhausted by the end of the week and limit my social life to include only those people and events I consider really important because I simply have no energy for anything else. Most nights I’m in bed by 9pm. Sorry, I’m not offering much hope that things should be better but at least you might feel you’re not alone in feeling the way you do. I’m 50 and feel like 70 but happy to be alive and disease free for every day nearer my pension.
Jan x