My partner Jo was diagnosed with IBC last Tuesday and we have been chewing over the information for the past 5 days. Jo has of course been experiencing her up’s and down’s and spending most of her time quietly on the web on these forums or out taking walks. I knew that my mind hadn’t quite filtered the information because I easily managed to stay upbeat these past few days and just be myself as much as possible for her. We got a puppy and I’ve been training her and we’ve been showing Jo her tricks in hopes of lightening her spirits even if just for a few minutes.
But yesterday everything suddenly hit me like a train and just seemed to be too much for me. I mean, I’d always been a sort of domestic queen so to speak, but yesterday it was like all this stuff was suddenly required of me and I just didn’t know if I could do it.
I spent most of the day away from Jo because I didn’t want her to see me crying and upset and no matter how hard I tried I just could not fake a straight face or a smile. What made matters worse was that I had this horrible, painful energy in me that made me feel like breaking something. Just huge frustration that really hurt to control.
It took a couple of hours but I managed to feel like it had released and could sit in the same room with Jo with a pretty positive attitude.
Today is a bit better. I’ve still got my focus on the puppy’s training but I can see that I’m still really touchy and frustrated inside. I’m fluctuating hard between not knowing what the hec I’m supposed to do, feeling incredibly guilty about everything and feeling told off by everything Jo says to me. If she says stuff like, ‘Well this will force you to be bigger hearted.’ I just instantly feel guilty and think, ‘Was I not bigger hearted before?’
I’m trying really hard to be ‘bigger than myself’ and I’m not an idiot, I know the most important thing is surrounding Jo with gently, positive energy but my body physically aches at not being able to get whats inside of me out.
Does anyone know what this is like? And if so, how did you get through it?
Over all I know that this IS NOT ABOUT ME, but if I can’t get my mental state right I’m going to be of no use to Jo and I do not want to set myself up for being angry at anyone, especially Jo.
It’s so difficult watching the person you love more than anything or anyone in the world, going through something so heavy. Feeling like they’re pulling away and not being to do anything to help them.
Sorry again for the rant, but any help would be greatly greatly appreciated!!
xxx
Hello erinbeyer
I think and everyone on here will agree the waiting is the worst time I think once Jo gets her treatment plan you will both get your heads around it. Do you know yet is she having an op, chemo, or are you still “in the dark” I have only just started on this journey, Had op and first lot of chemo, I think it affects my OH just as much as me because apart from listening to me all he can do is be there to support me. Have you thought of councelling, it might help for you to talk to someone (I know its mostly things women do, but my OH has been offered councilling, wont take it but thats a blokey thing) Please keep posting your feelings and perhaps Jo can post on here to. The help and support I get from this forum is invaluable to me. Look forward to hearing from you again and I am sure there will be lots more lovely people come on here and try to help.
Hi Poodlepatch (sweet name, btw.) Thanks for replying. We’re still ‘in the dark.’ Jo had her initial biopsy the day the doctor said it was IBC, and she had a bone scan yesterday. We have an appointment Tuesday where they tell us more about the results of the tests and tell us their plan of treatment.
We’re lucky because the doctors, nurses and staff have all been really supportive and positive.
Also on these forums everyone has shared the opinion that these times are the hardest. In a really strange way, I can’t wait for Jo to start treatment because it’s really awful seeing her sort of walking around in circles trying to deal with it.
Luckily though we have some really fantastic friends who are just instantly brilliant.
I guess it’s just going to be up and down for both of us and I have to try to ignore my feelings of insecurity, etc etc. Counseling is not a bad idea, actually and I’m really seriously considering it because even though our friends have offered support to me, it’s almost impossible for me to not feel like they’re all thinking, ‘God can’t you just forget yourself and your feelings long enough to support Jo?’ Even though I know they’re not actually thinking that…
Just crappy insecurity. But I wouldn’t feel that with a counselor. Someone neutral, etc. Thanks for suggesting it.
Will definitely keep posting stuff here.
Thanks again!
What you are feeling is totally natural. You feel so helpless because the person who is ill is the one person you would do anything for, and this is the one thing you can’t take away from them.
I know from being on the other side. When my mum was diagnosed three and half years ago I was in a terrible state, couldnt stop crying and felt so useless. Since I have been diagnosed myself, I have actually been much calmer and more in control than I was when it was my mum. I do think its easier sometimes to be the person who is ill, rather than the close family members who just feel so helpless.
Good luck to you and Jo for whatever lies ahead. It wont be an easy journey, but it’s one that can be done, and with your love and support for each other, you will get there in the end.
Hi Erin, you sound such a lovely lady, your doing the best you can in an awful situation, my other half has struggled to come to terms with my diagnosis, I think men don’t quite understand,your feeling this way because your a woman. I have IBC too, but in the end its still breast cancer and it will be treated, its the not knowing and waiting that is hard, but once Jo has her treatment plan it will get easier, honest!
I have just had some counselling because I felt I could n’t let my other half see me crying because it upset him to see me upset, the counsellor told me the couples that share tears and let their anxieties out get through treatment better, so don’t shy away from Jo ,cry together and share the worries, it won’t last forever and you will both feel better for it.It’s so hard to know the right way to deal with this but you’ve never been in this situation before so be kind to yourselves ,try to talk about BC instead of avoiding the subject, I needed to talk about it at the beginning .
I also felt very guilty in those early days as I felt I had brought misery to my family , so maybe Jo is feeling that too, she needs to know how you are feeling to help her deal with her feelings, sorry I am rambling on , I hope you both find some peace , it will get better.
Jean
Hello Erin,
It’s lovely that you are wanting to do whatever you can to support Jo - and you obviously are doing that.
The puppy will need a lot of attention, especially at first, could it be that Jo feels you are channeling your efforts on the puppy rather than her? I can quite see the reasoning in getting the puppy and I’m sure it will turn out well, but when you first are told you have BC
you don’t have room in your head for anything else, you wonder if you have a future, everything seems very bleak. I have to say that thank goodness those feelings subside when you get your results, a plan for the treatment and something starts happening.
It’s great that you come on here, we all need the support, but don’t forget to talk to Jo about it - how you feel as well as how she feels.
You are both in it together. Don’t try and be strong and silent and avoid her at this time. Just be the loving, supportive partner she already knows you to be.
I am 41 and was diagnosed with breast cancer in Jan 2009 aged 38…It wasn’t IBC but I feel I wanted to come on and talk to you when I read your post. I do not actively take part in these forms much now as I have completed all my treatment but I do visit now and again, life has moved on and I am trying to get back to normal…I have been with my partner 13 years and this year we managed to do the right thing and make it legal!! My partner has been my rock, my soul mate and has been there heart and soul throughout my diagnosis, treatment and beyond. You and Jo are where Sandra and I were 2 years ago…Yes it has been tough, and it has been one heck of a journey…no one asked for this and it is totally normal for you to be feeling the way you do…as the patient, I probably feel more in tune with Jo but over the last 2 years Sandra and I talk about how this has effected her, talking has been our bond and I have tried so hard not to shut her out and to make this all about me…for a time it was, when it was treatment, medication and all that stuff…but we have came out the other side and are happier and closer than ever before…you will experience so many different emotions and you sound like you know what jo needs…just be there for her, talk, laugh, cry because that all needs to happen at times…just take one small step at a time, don’t look to far in front, just deal with this week…and the puppy…we have 4 kids, 2 cats, 2 bunnies and a hamster…all fantastic distractions may I add!!..please come on here and rant away!! you need this as much as Jo does, and Jo needs you as much as you need her…be strong and take it easy…
This cancer cap affects the whole family, not just the person carrying the disease. it’s like an atom bomb going off so no wonder you’re feeling flattened. the wanting to hit something or throw something is completely understandable so don’t feel you have to be or do or feel any particular way. Im glad you’ve both found the forums. the lovely people, ladies and men, patients and partners, have been an amazing support and I’ve made what will be lifelong friends on here. i hope you find the same level of comfort, you won’t find this with people who aren’t going through it because they don’t understand to the same depth.
Hi all, thanks again for your positive words! Things are looking more up today than the past couple of days. I can still see that sometimes I take things too personally when it comes to Jo’s words or reactions or general demeanor. But I’m getting myself into the habit of just sitting down for a few minutes, reminding myself that it’s not personal and then just getting on with something like house work or stuff like that.
Jo had said she wanted only positive atmosphere around her and couldn’t really handle my upsets. She said as long as I keep them away from her that it’s fine. So I guess that’s just what I have to do for now. I think as well it’s because I’m a particularly emotional person and before all of this I was heavily reliant on Jo in times of upset. I did think that part of the reason she can’t handle it is because it’s very hard for her not to want to just put herself on hold and support me. But obviously now, she needs to focus on herself and what’s going to make her most happy and comfortable in the following months.
We do start to talk for a bit every day but I can just sense when everything is becoming too much or too heavy for her so I try to stop the conversation and change the subject quickly before upsetting her.
Also, maybe I’m giving too much of how I feel away and that in turn brings her down. Very complicated, but I’m sure I’ll develop a system of dealing with my feelings and knowing what I can and can’t share with Jo for the sake of her happiness.
She hasn’t cried in front of me at all. I mean she’s usually not a ‘cryer’ anyway, and is pretty tough, but I did think that perhaps it hasn’t quite sunk in for her yet? Maybe it will become more real for both of us once we hear the test results and get our ‘plan of action.’
That’s Tuesday so fully expect another 80,000,000 paragraph entry from me.
Thanks again to all you lovely ladies. I truly can’t express how much admiration and respect I have for all of you!
Lots of love
Erin
erinbeyer, As much as your partner you are in for a pretty rough time too.
I am a BC hubby, so relationships will be a little different. I also had spells where I tried to avoid my wife a little, as I was trying to hide how scared I was.
As well as waiting for the actual treatment, this is also going to be a difficult period as you both trry to work out how to deal with it.
Sorry to see you on here, but now that you are you’ll get great comfort, advice and ears to bend from the amazing people on here. This bugger of a situation is mainly about your partner, but it is about you as well, as you are in it together and you need support and understanding in order to provide support to your other half. The only difference is that your partner has more issues to deal with, so you need support from other sources so as not to burden her.
My wife’s frustration and anger often vented at me, was taken to a tree on my running route which was shouted at many times to relieve my own pressure. Doing too much and taking away my wife’s independance was an innocent error and a natural response to trying to help and do everything in order to feel useful. However, trying to carry on as ‘normal’ was actually the best medicine otherwise wallowing in self pity could easily have been a nasty path to tread.
I very much hope that the results and plan of action were more positive for you both.
How IS Stuart these days, Rich? I remember your tales of talking to the tree and was very impressed. I hope he’s had a successful Spring and Summer and has grown lots of new leaves.
Erin, those of us who have it often worry more about our families and partners than we do about ourselves, so I’m glad you’ve found this site.
Hi CM Scott the scot’s pine tree (chose an evergreen mainly because it was the sturdiest tree I found, away from public view, and I guess remains full of life all year round), original name I know Scot is fine and much less abused than previously, as we are at the end of treatment (except Tamox). But we are sailing into the unknown and like many others before, I get waves of panic and ‘what ifs’, but Scot is nice to sit under to watch the Squirrels and other wildlife in the woods nearby - quite calming really.
Erin, one of the hardest things for us OHs is feeling helpless and not being able to take away the physical and mental pain directly from our loved ones. I would literally have given my right arm to physically take the cancer from my wife and have it myself instead of her, which is why it is easy to over compensate with wanting to talk about it alot of the time and over helping. The trick is to try to carry on as normal as you can.
Scott the scot’s pine tree (chose an evergreen mainly because it was the sturdiest tree I found, away from public view, and I guess remains full of life all year round), original name I know