Hi, what a fab idea!
I was lucky enough to have my fiance with me for the majority of my cancer diagnosis, treatment and day to day stuff for 4 months until he went back to work. He was off work with stress though at the time and was so scared to leave me due to the severity of how ill I was. He had to take on every role and he did amazing, is doing amazing! He was able to do this because his work were supportive to him and understood he had needs alongside mine.
The things we have both found most helpful have been the people who ar just there, the ones who don't know what to say or do, but they are there with you, and are honest about it. The ones who keep texting, ringing, calling even though you don't want to speak to, or see them right now but they understand, and just want to let you know they are there when you are ready. I found people who didn't quite understand this, would think i'm giving up if she doesn't want to talk, and then tell other poeple I wasn't talking or responding, which then meant other people wouldn't bother because they didn't want to overload me. They didn't know how alone I felt and after a while you start to think people don't care.
I must admit initially people helping out was frustrating as I still wanted to be the same person before I had cancer, I didn't want to be treated differently. I wanted to be able to do things myself, but any little thing which i didn't have to do around the home was a blessing, but just maybe ask if it's ok first before just doing. People doing the washing, ironing, cooking, cleaning was brilliant and meant I could gradually get used to doing the little things again.
Understanding it's not a 'fix it' situation. When a loved one is hurt/poorly/upset all you want to do is take it away or fix it, and unfortunately you can't. Having someone just listen to you, and not judge, offer an opinion or a positive solution is bliss. We have to stay positive through this process but understanding that if you have a bad day that's ok too, because there are lots of dark days where you feel like there is no way out, but that doesn't mean you aren't being positive, it means your being realistic. Constantly hearing "stay strong, be positive, you've got to remember, there's other options though, can they not give you something to stop you feeling so down" can do more harm, as you don't feel like you're being listened to, as they don't get how you're feeling. I found people who asked why I was feeling the way I was feeling or empathised that the situation is just rubbish, rather than offering a solution was much better, and were the ones I spoke to more.
I sadly unexpectedly lost my mum two months before my diagnosis and didn't have that many female family members who I could call on or who were local enough to be with me and I do think there should be more support out there for family members and it offered from the start. As a women going through cervical cancer surrounded by male family members, not only has this been traumatic to say the least for us all, it's also something which they know nothing about and can't relate to. My fiance had said he wouldn't recommend the few forums/blogs he had seen from family members supporting someone with CC as they were all quite negative. It would be nice to see more partners/family members sharing what they found useful and coping strategies. I would love to see something which offered online support for males specifically supporting their partner who really could use that extra bit of support or may not want to openly admit they need it. I have seen first hand how men in particular don't or won't admit they need help, there must be another way to support them when they are doing so much for their partners/sisters/daughters/mothers etc.
Fertility issues were one of our most problamatic areas with other people/family/friends, as finding out you can't have children naturally is very distressing time and also another area where people don't know what to say. Adoption and fostering were the response we got every single time someone found out, and it was horrible. As much as we understand this is a way of trying to be positive, it's also a suggestion which we have already gone over a million times in our heads, and it doesn't make it hurt any less every time it's said. If someone would say "i'm sorry, how do you feel about it, or do you have alternative options?" then you are in control of what you say to them, and can acknowledge this may be a possibilty in the future but right now you have to grieve for the loss of a child your never going to have. Adoption is a fantastic way to offer a child who needs a loving home the one they deserve and also to support adults who cannot have children on their own, but it's not an immediate fix.
Sorry feel like i've wrote an essay, once you get going there's so many different things! xxx
