She has been home for 2 days now, its odd as at times it all seems so normal, a normal weekend in lockdown. But its not normal. She is scared, she is asking why her, she says she doesn’t feel brave, yet to me she is more than brave. I have told her its okay to be scared and not to feel brave, because we are here to be brave for her, that she’s not alone, she said but she is alone with her pain 😪 (no words!)
She has been home a week now, we went to City Hospital last Tuesday for her top up chemo, we were there 6 hours, mainly because they only make the chemo drugs up once you are there and also because her medication needed sorting, they were meant to be reviewed and we were running out of some, it took ages to sort. Luckily we were in the quiet room on the Teenage cancer ward. Unlike the chemo ward which was very busy and noisy when I went, so much better.
This week has had its ups and downs, some days almost normal. But her hair started to fall out, so she needed to take control, and shave her hair off, I am grateful that last year she decided to cut her long hair off and have shoulder length hair (she did donate it to the little princess Trust- who she could get a wig through now if she wanted) it was emotional as now she looks like she has cancer, coupled with the emptying of her uni accommodation makes it all seem real, we did cry together as its just so unfair, she should be going back to uni and enjoying all that involves, being with her friends, her uni accommodation was a safe, chilled place for her, she loved it there so its heart breaking that today we had to empty it…….
People keep asking me how I am, from friends to professionals and I don’t know i can’t answer that, I am going from day to day. I am busy, she has meds 4 times a day , so I am medicine lady and feeding her at least 3 meals and snacks a day. My specialty are milkshakes (Eskimo style – she was told NOT to eat McDonald’s milkshake as not good with low immune system- so of course crazed one, homemade best). It is getting harder to feed her as her mouth is so very sore, but we are succeeding and working with it, as its the only real pleasure she can have. For me its good I can help a little, I am also asked does it help that I have had cancer and chemo, it does a little, as can relate to losing hair and that life goes on for others, but her chemo is so much more intense, and she is only 21. Nothing prepares you for watching a 21yr old having to fight a very rare cancer.
I am sorry that I have avoided talking to people, answering messages mainly because I really don’t know how I am, or how we are, I do appreciate every message, offer of support, but some days I do just want to curl up and shut the world out, but can’t as I need to be strong for her, she worries about us as it is ….. I will answer your messages eventually ❤❤