Struggling

Hi Bikerbabe,

Unfortunately you can’t just take it all away and your husband knows this too. Helping him get on top of his pain management is something you can do. That and making the most of every day you have together. Finding things to make you both smile and reminiscing about the years you have spent together. Also making sure to look after yourself and giving yourself some respite from the carer role by meeting up with family and friends. There is no rule book for what you’re going through. 

Thank you for your lovely response

ditto that bikerbabe, what ever you need just shout, i am the patient but in our morning club in the radiotherapy waiting room, lots of partners that are like your lovely self, going through more than the patient, almost being nurse, carer, nag, morale booster, its so hard, hubs nearly overdosed me the other night! so have left myself to my spreadsheet and sorting out my meds just to be sure. hes in charge of the appointment rota, and departure times to get to the churchill parked up and on time.  not sure what hospital you are having treatment, we are in bucks if i can help, meet up in any way x

find those morning chats with like minded people so refreshing after being at home day in day out, thank god the weather is so rubbish, but looking forward to a small walk at some point just by myself

make sure you some how have some you time, some how, any how, those bloody waves dont stop, to do what ever, breathe, cry, take a breath, and turn the cancer brain off, down, seems my chemo monday slot i find myself before it starts sobbing my heart out in my new therapist area, the loo, almost with my hands over my mouth, today worse so as body couldnt take the chemo that was planned so the last one allegedly next tuesday

we have found some people dont know what to say, even when they mean so well

genuine examples - as i also have lost weight that i cant afford to lose, a friend said "i need to lose 3 stone, maybe i could do with some cancer!!

"you beat this once, you got this" - erm masectomy childs play (surgeons words) compared to the open surgery you will have, and a year to recover at least!, and if i beat it, why has this little git come calling 4 months after final radiotherapy for breast cancer.

"pop those big girl pants out, youll be fine" - they wouldnt stay up anyway with my new skeletal frame, id end up pulling a scary bony mooney!

and so on, can look back and sort of smile but tolerance seems to have gone to its own level.

just sending luv and hugs biker babe, have tried to explain to hubs, friday builds as i have the weekend then chemo monday, so feel everything closing in, and overwhelming me, 5 weekends in a row have been awful, with me hiding upstairs, instead of being out distracting myself before monday with hubs, can feel some of the tension leaving already now "monday" is nearly done

take care and again if you need anything, xx

Hi yes as you have said I am in charge of a lot of medication, I do however keep a diary and write times he has had Morphine also. We are scheduled for chemo again on Monday, id he is strong enough to continue, talk with consultant on Thursday. Palliative nurse here this morning, I feel she will be shocked when she sees him as he has lost a lot of weight since her last visit, she has phoned a few times. I do my crying in the dark and in the bathroom, I try to stay strong, but sometimes you have to let it go. 

You take care yourself, perhaps you could suggest a medication diary? 

I'm sorry I can't offer any words of comfort. You are doing the best you can. I hope things improve, lovely x

Dear Bikerbabe. As LozzaT has stated, you are doing the best you can. You are working within your own guidelines in order to keep a grip on things. We never know how we will cope with unbearable circumstances, and we all cope in our own way. I was diagnosed a year ago in May and for me it was crucial to keep those in the know to the bare minimum. It helped me feel in control and less exposed. I guess that is similar to you saying you have people who want to help, but you prefer to keep to yourself. Keep following your own instincts borne out of the love you have for your husband. Will be thinking of you, Julie