So I have been in two minds about writing this post as I feel incredibly selfish and I am not sure if I have the right to even feel like this. When I started with The IBD and Ostomy Support Show with Louise, Rachel and Natalie I didn’t expect to gain some of the closest friends I could have ever have asked for. As Rachel has said to us all we are like stoma sisters…and she is right these girls feel like my sisters.
Rachel a little while ago had a social media vacation and I am not kidding you it was really hard for me as I talk to Rachel everyday, well let’s face it I talk to all three of them everyday but we all talk to each other about certain things separately like any friends group. I love them equally but I don’t know what it is about Rachel she is like a magnet, a magnificent magic magnet! I kinda feel an affinity with her and if I found it hard not being able to talk to her for a few days what will I be like when she is no longer with us? Rachel on various platforms has spoken about being terminal and how she copes with it.
This is where I get selfish because I love her and I don’t really want to think of my life with a Rachel shaped hole in it but I constantly tell her she needs to think about herself and how she wants to live her life. People around her have expressed their own opinions (which is always fine until you try to force them) about how she would rather have quality over quantity with her life. She is doing what is right for her and that is all I would ever want for anyone.
But when I think about how hard it will be for me I just think “you selfish bitch” I am not the one that has had one of the hardest things to hear told to them and then consequently having to live with knowing there isn’t a set time limit she is just terminal. That surgery options could lead to her untimely death due to sepsis or dramatically reduce her quality of life. I couldn’t imagine how that must feel like to have to think of everyday as being your last (I don’t think she thinks like that but I am pretty morbid and when it comes to myself pessimistic) having a sense of urgency to do so much in an undetermined amount of time, but when you think of it isn’t that life anyway right? But having the realisation you don’t have forever like we often presume we do must be pretty hard.
I know that Rachel has come to peace with the fact it will happen and the uncertainty of it all and if she can then I certainly should. But even though it is hard for me to have a terminally ill friend, it must be something else to be terminal. I found it all pretty surreal that from her having some time away also known as “we all told her mum to confiscate her phone and laptop so she could rest properly” so hard. I want her around all the time so I can ring her and chat utter bollocks, so someone can laugh at my pants jokes. The way mine and Rachel’s faith works is that when someone passes away they are always with you in one form or another; the more physical side of a memory where you get the sense they are there.
I haven’t ever had to go through the knowing about the ins and outs of terminal illnesses, since I lost my Grandad from pancreatic cancer. I really struggled back then to visit him because I couldn’t cope, I felt I wasn’t strong enough. I wanted to be like my Nanna and just get on with it because the other option wasn’t worth thinking about. At the age of 17 you aren’t mentally mature enough for something like that but are you actually ever ready? Being the person going through it or just on the sidelines do you ever really feel like you accept it?
But I have spoken to Rachel about this and she said it is harder for those around her in one sense because we are the ones who are around afterwards to miss her and she won’t be here to have to deal with it. Okay she used other words than that but for how blunt, honest and to the point they were I feel like people may not take it the way she intended! I also really like the fact her body is to go to medical science because not much is known about Autonomic Neuropathy and hopefully through her body they can help others which is an amazing thing.
I know Natalie and Louise also find it hard to think about because we are all so close and adore each other. Who knew that from being so ill we would have such a strong bond with people through our illnesses. I personally can see that as a silver lining having Ladies who “get me” and I guess can’t be too angry or resentful that any of us got ill to begin with.