May the 4th be with you

I'm sitting here with my laptop on, feet up and the TV on giving me the latest mayoral and local election results. I'm feeling quite content with the results so far and hope that all political parties truly learn from what the people are saying. Lets hope the same happens when the general election comes and that it's called soon. We need to face our problems like adults and start sorting this mess out. 

Regular readers will know I picked up covid for the first time in July. I've been below par ever since. I've had a dreadful cough. it's not so bad now but it's still very present especially in the morning. On top of this I've developed chronic sinusitis. It's horrible. Last month I had an endoscope shoved up my nose to confirm the chronic sinus problem. The consultant was a gentle soul. He told me to use a decongestant nasal spray for 10 days as well as regular wash outs. It didn't work and I ended up with a few nose bleeds to make matters worse. When my sinuses are full it puts pressure on my face and gives me a headache. Also on the side that's more effected, the darkness under my eye is worse, so much so I've been asked a couple of times if I have a black eye. I don't know if it's connected. I go back to him in August to work out what next. I hope he can do something.

On top of all this, every now and again, I feel dizzy and very nauseous. My appetite is reduced and I've had a gippy tummy. Last night my lovely little sister invited me and Maggie for dinner. She knew I hadn't been eating so well, so she did a jacket spud with some picky bits. She's very thoughtful like that. I didn't manage to eat what was on my plate. About 30 mins after finishing eating. I'd been sitting very relaxed and chatting, when all of a sudden I didn't know if I was going to pass out or be sick. Gail is sick phobic so I knew I had to get out of the way! I managed to stagger out of the room and get to the bathroom. I was sat on the side of the bath but then realised I may pass out so better to get on the floor. Sweat was pouring off me and my breathing was really ragged. My skin felt prickly and clammy. If it's just because I'm going to be sick I don't have all the other symptoms and I get sick really quickly. It took a while for the sick to come up and a while before I felt able to stand again. Normally being sick doesn't faze me at all. I'm so used to it and generally very quiet about it. This time I felt slightly anxious as it impacts on another weird symptom. It's horrible at the time but wears off pretty quickly.

The first time I experienced this weird symptom I mentioned earlier was when I was in Ireland, just after being diagnosed with covid. I was sat at the table eating a meal with my family, including two grandchildren. All of a sudden, I started to cough. It was like food had gone down the wrong hole. As I struggled to catch my breath, it was like my windpipe totally collapsed. I couldn't breathe in or out and as I continued to struggle I was making this awful high pitched noise as I tried to get air in. My partner was frantically slapping me on the back. I remembered that sitting and leaning forward is the best position to open your chest so I sat down. After what seemed like an age but was probably not much more that a minute it suddenly opened up and I could breathe again. I made some quip to the grandchildren about 'well that was dramatic"and tried to gently eat the rest of my food. Inside I was trembling. I am a calm person but that stressed me. 

It happened again on another occasion when I was eating a meal at home. Exactly the same. It's like my windpipe just shuts and I just can't breathe in or out. This time it was only me and Maggie. I have to force myself to be calm which is not easy. I mentioned it to a doctor who had no idea but said to keep an eye. The third time it happened, I was having a meal with my brother and sister-in-law. The offending bit of food was a piece of raw broccoli. It only touched the back of my throat, I didn't even swallow.

This time I sent an email to one of my consultants. He said it's not my windpipe collapsing but a spasm and to go to A&E if I'm worried. Not particularly helpful. I wouldn't go to A&E after its happened because I'm fine then and I do't want to waste precious NHS resources. The last time it happened it was not around food at all. I was getting ready for bed. Maggie was out. I just started to choke for no reason. and my airway slammed shut. I sat on the bed and lent over my side rail. It seemed to go on and on. All I could hear was this high pitched noise and I could feel the panic rising. I was convinced Maggie would come home to a corpse! It was a horrible experience and was by far the worst one. As a result I reminded Maggie how to give CPR and what to do in that scenario. Not a nice thing to have to do but I was convinced it was getting worse.

This has left me with an anxiety I've never had before. I'm much more aware of how I eat. When I got sick last night I began to feel the vomit catching my throat. As I was throwing up I was thinking "Oh my God. What if it happens now?" Fortunately it didn't. I was mightily relieved.

Going back full circle, when I met the lovely ENT consultant I asked him if he knew about throats as well as noses. He asked me why and I explained. He asked me if I have reflux, which I do. He explained he thinks it's a spasm that cut's the breathing off for a while but then is ok. He said worse case scenario you pass out and your breathing comes back to normal. It can often be triggered by a respiratory infection. Well I've had one respiratory problem or another since July finally having a negative test at the beginning of March. 

The ongoing and relentless nature of these late effects from my cancer treatment, at times leaves me really debilitated. I refuse to lose spirit though. On this special Star Wars Day I want to encourage you to feel the force within and around you. You are all so much stronger than you think. Always remember."This too shall pass!"

Music is the language of the emotions

 Life in our strange new world continues apace. I’ve been doing alright on one level. I’m still managing to stay off some of the most toxic of the medications that I’ve been taking for years. My consultant agrees that stopping some of the tablets has been better for me than she anticipated. Let’s hope it continues that way.

I had a very strange situation recently. I had not long been out of bed when all of a sudden it seemed like I had stared at a bright light. I couldn’t see properly. I looked in the mirror and all I saw was from my eyebrows and above. I couldn’t see my face or shoulders even though I should have been able to. I only really have vision in one eye having been born with a lazy eye. Not being able to see really freaked me out. It didn’t last long and went as soon as it had arrived but it left me very disquieted. As a result I made an opticians appointment. 

I saw a very professional and thorough young woman. At one point she kept looking in my eye and going back to the computer. She then asked me if I was under the hospital for my eyes. I explained that due to the transplant I had very dry eyes probably as a result of GvHD and was given drops from the ophthalmologist to treat this. She then told me I had moderate cataracts in both eyes and I also had dot haemorrhages in the back of my eyes. She said this would need further investigation. It seems this type of haemorrhage is often seen in diabetics and in people with high blood pressure. I have neither of these. The mystery deepens. 

As you can imagine, having only one working eye, I am anxious about needing anything done. I know the cataracts will need doing but it scares me and I’m not easily perturbed. It’s rare that there are complications from cataract surgery but they do occasionally happen. The optician said to me that it wouldn’t matter what lens was put in my glasses, they wouldn’t be able to improve things. I know that eventually I won’t be able to see well enough to drive or read. It would be good to get it sorted before that point. I think I might ask for a specialist referral o Moorfields as they have such a brilliant national and international reputation. 

Life with Covid restrictions continues to be hard. According to government guidelines, if I was well enough, I could return to work. According to my consultant I should continue to be cautious and shield. I know who talks most sense, so I’m following my consultants advice. Myself and my long suffering partner continue to entertain out family and close friends occasionally but only in the garden. I’ve no idea what we will do once it’s too cold to be outside. Maybe we will invest in a patio heater. 

I had been feeling a little better but the last week I’ve felt tired and washed out again. You have to keep taking the rough with the smoothie I guess. Let’s hope it’s only another blip. 

One lovely thing I had the honour of doing was to help my newly found brother and sister-in-law renew their wedding vows after an amazing 40 years of marriage. They did this in front of their nearest and dearest only instead of the lavish party they had planned due to Covid. I was so happy to play a small part in making the day as special as possible. 

This week my eldest grandson gets his GCSE results. I know he will do well. My heart goes out to all those young people who have not had an easy time of it and are anxious about their results in this weird year. Let’s make sure we surround them all with love and light. 

Many of you may be aware that I record an audio diary for BBC Radio Kent that is broadcast every Sunday morning. I am about to record a segment for them which explains how I experienced my first sense of vocation. I was a young 15 year old and had been taken on holiday by my church to a place called Lee Abbey. During one of my visits there I was stopped in my tracks by a beautiful duet version of the hymn When I survey The Wondrous Cross. It came from a musical called Saints Alive and was written by a man called Roger Jones. The duet is hauntingly beautiful with fantastic harmonies. I went on to sing it in many concerts. The last verse is the powerful bit that got me: 

Love so amazing so divine

Demands my soul, my life, my all

Demands my soul, my life, my all. 

What I realised, as an abused and troubled teenager was that if I lived my life in that divine love, it would take my soul, my life and my all but I would be happy. I knew in that moment that God wanted me to work for her. Trying to explain a sense of calling is a hard thing. It’s like an inner voice that goes on and on and because I didn’t listen so well that inner voice went on for 20 years until on another holiday I had another profound experience. This time I was on the island of Iona in the Inner Hebrides of Scotland. I was in my 30’s and as far as the world was concerned I had made it. I had a great partner, a beautiful home and a good job. Despite all of this I was disquieted inside me. As I wandered around Iona on a pilgrimage, I realised that d3spite all the material wealth I had  and despite all the loving relationships I was not going to be happy until I put myself forward for possible selection for ordination training in the CofE. I remember saying to God as I wandered around “Ok mate, I’ll do it, just to prove you are joking me because how can you want this unorthodox street urchin as a priest” I was really shocked when I got through the process and remember when I was ordained closing my eyes at the laying on of hands and feeling a deep peace that I was finally where I was supposed to be. 

Here’s the YouTube link for that beautiful duet if you’re interested. 

https://youtu.be/A_rjHN_DAj8

In order to include the song in my blog and audio diary, I looked up Roger the composer to make sure I had his permission to use the track. I was pleased that he responded to my email very promptly and we had a lovely chat on the phone. He is very happy for me to use his words and music. 

Music and the love of God expressed through the kindness of other people helped this street urchin survive the difficult start in life I had. In fact they still do. I always say I stand at the point where the love of God meets the mess of the world. That would not be possible without living through and learning from all of the experiences I have had to date. That’s why I firmly believe that your present circumstances don’t determine where you can go, they merely determine where you start. Where you finish is up to you.