Appointments appointments appointments.

2 Feb

I seem to spend half of my life in hospital or GP waiting rooms. I'm in phlebotomy just now waiting for a blood test. I have to have the test before I see the consultant. The consultant needs the results in front of them when I'm seen. That means I have to come at least an hour before my appointment time. Today the blood tests are running slow and it seems it might be 55 mins before I'm seen. That means I will have to wait at least an hour after that for the results to come through. 

I try really hard not to let all this stop the rest of my life but it's hard. On days like this I know I can't work. I don't like taking so much time off but I have no say and no control. Surely there has to be a better system than this? Sometimes I think the medics should experience what they inflict on us. They are all lovely people but I'm not sure they see the impact of their systems on the patients they treat. 

Let's hope after all this sitting around the result is good.

Today's appointment went well. Things are looking better than last months awful result. I have my next appointment in another hospital in a month and then a follow up with today's clinic in 8 weeks. It's a never ending cycle. I wonder what I could do to liven up these events. 

What was lovely was an unexpected lunch and a good talk with a woman who talks a lot of sense. 

Now if only I could get this awful pain to stop and regain my ability to sleep through the night. If that happened there would no stopping me.

There is a proverb that says "may you live all the days of your life" We all need to live until we die and not start dying from the moment of a difficult diagnosis.

Living with cancer

In 2015 I started a Facebook community page called "We are all terminal - The reality of living with cancer. Initially and for quite some time in fact, I did this anonymously as most people didn't know I had cancer. Maybe the reasons were multifaceted. I've never wanted to be treated differently and I also don't like hurting, upsetting or worrying people.

I was diagnosed formally in 2000 with a rare blood cancer called myelo dysplastic syndrome. I had had symptoms for a few years before this but, due to the rareness of this illness and the fact that it usually afflicts older people, it took a while to diagnose me.

That means that for the whole time I was writing my blog about chaplaincy and working with people caught up in the many traumas that brought them into hospital, I myself was also having regular medical appointments and dealing with my mortality. Maybe that helps explain why I have such a passion to ensure people live until they die and why I'm not afraid to go where angels fear to tread.

I have decided to now release those community pages via this blog so that they are accessible to a wider audience. I hope that in a some way these random thoughts help anyone who is struggling. September is also blood cancer awareness month so I do it in honour of all of us living with various blood cancers as well as all the other fighters and survivors, carers and patients. You are an amazing bunch.

Jan 2015

When you live with cancer you do want to inspire people. I certainly don't want people to just see the illness. I want them to see me for who I am. I still want to be a mischievous imp. I still want to be a valued member of staff. I still want to be a much loved family member. I don't want to be the cause of worry and upset for people. I guess the trick is to learn to cope in all those situations and always to make the best of it.

It's hard to explain tiredness to someone who doesn't have cancer. When I say "I'm tired” I often get back "I'm tired too" When you have cancer though tiredness takes on a whole new meaning.  It's like being tired in a way that no matter how much sleep or rest you get it doesn't make a difference. It's an exhaustion that goes down into your very core that nothing can fix. Next time someone with cancer says "I'm tired" stop and think if you really know what they are talking about.