Moving away from this, several of my friends really did make a big effort and came out of their way to see me. My one friend Claire went to great lengths and came all the way from Manchester to visit me whilst I was staying in Royal Papworth Hospital. This meant a great deal to me at a time, when I was starting to feel like no one actually cared about me or what was happing to me. It’s quite a lonely place when you are so far away from your own home and there’s no one to keep you sane or keep you positive. Seeing her brought a smile to my face. I wished I’d been in a better state at the time as I had hardly any voice and all I wanted to do was chat lots. Also, I wasn’t exactly looking my best at the time, but I’m sure that didn’t really matter. I thank her on here because I will never forget what a true friend she was to come out of her way to do this.
So anyway, this leads me on to what the point of this post is about. This weekend I decided to go to a Papworth support group. It wasn’t until recently that I discovered that there are groups on Facebook that you can actually join. I think it was around September, last year, that I discovered the PHA group and following this I then found out that there was a separate group for CTEPH patients. Both groups have been amazing to join as I’ve felt like there are people there that understand and you can always ask for advice. Discovering both these pages helped me also find the Papworth support group too.
So on Saturday, I found myself driving all the way down to Cambridge to meet people that I’d already spoken to online, on the two pages I’d joined. I was feeling a bit apprehensive at first because I wasn’t sure how things would go and I’m always a bit quiet to start with. When I arrived, I had a lovely, warm welcome from a lady called Michelle who was introducing me to people. I started to feel quite relieved and at ease. I did start to feel as though I’d known them for ages after chatting to them for a while.
The talk was given by one of the PH nurses’ which was very informative and talked about balloon pulmonary angioplasty as well as pulmonary endarterectomy. As you all well know, I have had a pulmonary endarterectomy so I’m already converted to the idea. I learnt more about it whilst there and new things I hadn’t realised. I somehow wished I’d known these things beforehand but not that it really matters now.
So the importance of support groups is a great thing to have. Having a rare illness, you think there’s nothing out there for you. There are so many cancer support groups and other such groups out there but not much for us ‘rare’ people. It’s an amazing thing to have, when you find it, as you can talk to people who actually understand what you’re talking about. Saying to other CTEPH patients that sometimes some people don’t always get it because if you’ve had the operation, people will just look at you and think, well you’ve had an operation so you must be fine. I find quite frustrating. Although, I’ve had the operation, what they don’t understand is that I still have PH due to still having clots in my lungs, that are in very awkward places that can not be removed. Trying to explain this to people who are well and do not really understand this illness doesn’t always work. In which case, there’s no point explaining it.
I do try in many ways to educate people on PH. Having said this, people do not always want to listen because it’s not happening to them. If it’s not happening to you then why should you care? Well, we never know what’s around that corner, do we? One day you could be perfectly fine but then the next it could then suddenly develop.
It’s been a long path to get to this point but a path I’m glad I’ve found.
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