Speech!

Dec 2020...because I like this photo

In 1985, I was the youngest person, at the PAH, to have an appendectomy.  I had just turned five. Only days later, after discharge however, I was back. Green goo oozed from the wound. I had peritonitis. As the admission was around Christmas time, I recall making Christmas craft. I don’t know how accurate my memory is, but I feel like I had a bed not too far from a window that overlooked brightly lit buildings. My initial physical examination, to determine the diagnosis has stayed with me. It scarred me. Seriously. The rest of the experience had been positive but it didn't matter. The damage was done. I was now scared of hospitals. To this day, the smell of hospital grade disinfectant hits hard when I walk through the automatic sliding doors; it doesn’t matter whether I am the visitor or the patient. It makes me so nervous. So, years later, when I’ve had other surgeries, I have always welcomed visitors. I can’t think of anything worse than being alone in a hospital bed!

I have another claim to fame. In February 2021, I was the patient with the most visitors. A lovely man, an ex teacher actually, was making up my bed in the room when he told me that I was the “Star of the Ward”. I thought it must have been my great recovery. But, I was given this title because I had the most visitors. So today, I want to do a shout out to all of those wonderful, caring, loving and generous individuals who have supported me along the way. My grandad always says that, “There’s no such thing as a free lunch” and my “Lady of Leisure” status, I understand, comes at a cost to others. 

My diagnosis ten years ago, brought out such generosity towards me. I found it quite overwhelming. I had lots of family help and I do realise that family support is not always a given. Friends came out of every corner, some who I hadn’t even been in contact with for some time. I couldn’t believe it. Strangers showed kindness to me. I recall the first time I had my head shaved when a random customer at the hairdresser shared my pain in losing my hair. I think of the TBC’s, the group of women who supported me and made me actually excited to go to chemo sessions because I knew that I would see them. I remember chatting with the TBC’s, at 3am in the morning, sharing side effects, because that’s what you do when you have steroids pulsing through your veins. 

Now, I have received messages, letters, cards, phone calls, visits, FaceTime sessions, pictures, gifts, activity packs, meals, house cleans, outings…I hope I haven’t left anything out. Well, I think you get my point. I have to say, and I’m sorry, that I haven’t always replied in a timely manner. Even so, I have really appreciated the big and the little things people have done for me and my family this past nearly two years. Cancer/chemo fatigue is debilitating. There are times when I am too tired to think, to say a sentence and of course too tired to do the everyday things that make us feel like a contributing human being.  

May 2021

 
I can’t remember the specific circumstances, but years ago I mentioned to my uncle that I didn’t know what to say to someone who was going through a rough time. And, for that reason, I had said I wasn’t going to say or do anything. And what he said stuck with me. He told me three things, not in these words, but certainly it was his message. You should say something. You need to acknowledge what is happening to them. You need to let them know that you are there. So I did. 

Thank you so much to those those who have said and done something, for acknowledging what is happening and for letting me know that you are there. It means so much. My latest claim to fame? I have the best support network anyone could ask for! 

MEDICAL REGIME (Third line of treatment)
The second line of treatment, shared on my previous post, stopped working after  around three months. I don’t know if it ever worked. The painful side effects weren’t worth it anyway. I was absolutely devastated that I needed a change in treatment. I opted for the oral chemo because at that time I had insisted that I wouldn’t do IV. I started this in the last quarter of 2020. 

Denosumab: A monthly injection to strengthen bones
Capecitabine: Oral chemo - every day for three weeks followed by a week’s break