Sunday 30 May 2021

Life’s irritations

 Sometimes really irritating things happen that you don’t invite into your life and have no control over, and yet you have to deal with them. It’s only by dealing with them that the irritation goes. 


Yesterday I received 4 items in the post. I opened the first one and it was a letter from rheumatology saying I had an appointment on 8 June at 1pm. As the clerk had rung me a few days ago and told me this I wasn’t surprised and already had it in my diary. It’s important to keep on top of these appointments and make sure they don’t clash. I always put them into the phone calendar so I know what’s coming up otherwise it’s hard to keep track. 


The next letter was from rheumatology telling me I had an appointment on 8 June at 3pm!? What on earth. I was very perplexed and you are not seeing things. It is two appointments on the same day at different times. I know I need regular monitoring but not every two hours. 


The next letter was from cardiology. It said that as I failed to turn up for my appointment on 26 May for a 24 hour ECG, I had been taken off the list and would not be offered another appointment. I knew nothing about this. I don’t even know who ordered it. I’ve already previously had a 24 hour ECG so I would have queried the reason behind it had I received anything asking me to come in for this test. I would never not turn up for a hospital appointment. I know it costs the NHS and I do t want to waste time or money. If I can’t make a specific appointment I always ring. 


The final item was a card from the post office telling me I had been sent something in the post but there wasn’t enough postage paid. If I paid £1.50 I could retrieve the item. 


Oh my days. I was so frustrated. As it was the weekend I could do nothing about any of it which added to the annoyance. Also it’s a bank holiday weekend so it will be Tuesday before I can sort it out. It’s really bloody aggravating. But that’s life. As I always tell people, life is only 10% of what happens to you. The other 90% is how you deal with it. 


Sadly in my life and my line of work I come across many people who experience minor irritations like above or more major irritations but they don’t deal with them. Instead they let them slop around inside themselves and it makes them brittle people. They don’t let any of it out in any productive way except to be unkind and awkward to the people around them. It’s so sad. I’ve known and know so many people who keep everyone at arms length and never reach their potential. I sometimes wish I had a magic wand that could make these people feel safe and loved enough to be honest and let some of the pain out. Sadly I don’t have a magic wand so all I can do is model good practice and show a different way of doing things.  Hence me blogging about the minor irritations of my post bag as well as some of the trauma and difficulties of living with cancer and the effects of the treatment. 


My sister Trish was a point in question. All of us suffered in childhood from poor choices made by our parents. That pain got locked into Tricia. In order to cope with how bad she was feeling, she started to self medicate with alcohol. What she needed was to talk about the pain. What she did was try and squash those difficult feelings. The problem is these feelings don’t go away they are just temporarily dampened. Then they come back again and you need more and more alcohol to push them down. 


Sadly Trish died from her alcoholism in her 40s. By then she was a shadow of her former beautiful self. She was pitiful and it was so hard to witness. I had only recently been ordained. Tricia’s funeral was the first I took as an ordained person. It was an honour and privilege to do so for my grieving family but it was tough. 


My plea to you all is to take a risk and be brave. If you have pain locked inside you, whether it’s caused by your illness and fears for the future of trauma from the treatments. Whether it’s to do with a failed marriage, a bullying boss, a difficult childhood. Whatever the cause, please love and value yourselves enough to do the work that will releases you from the chains that bind you to the past. It’s so important to look after our emotional and spiritual self not just our physical bits and pieces. 


I’ve been busy for a few days with stuff at home. My lovely sisters Gail and Dawn and their husbands have been helping me which is fantastic. Despite the busy time I was all set up to do a blog on Friday as it was World Blood Cancer Day. Unfortunately another irritation came my way. There was a problem with my freezer and unnoticed it had defrosted and all the contents were spoiled. It was a full freezer too. Grrrr! It meant I had to empty it all, clean it all out and take the contents to the tip. I couldn’t change the fact that it had happened so I just had to suck it up. Sadly it meant I missed a zoom meeting with MDS UK as well as doing a blog. That’s life. All I could do was shrug my shoulders and get on with it.  


Fortunately some nice things have happened too. The sun is shining and I’ve been able to sit out in the garden with some of the family at different times. 


Rose, one of the readers of this blog contacted me recently and said I’m always talking about my grandchildren but what about my children. My beautiful daughter Annie is mum to my 4 grandkids. I couldn’t be more proud of the amazing woman and mother she has become. Rose I’ve included a picture of us especially for you. I hope all has gone well this week with your surgery. Annie has been going through a bit of tough time so it was lovely to be able to spend some time with her in the garden and give some socially distanced support. It’s so tough not to hold those you love! It will come I’m sure but for now my partner and daughter carry the anxiety of what may happen should I become ill with covid. As a result they are very cautious with me. Annie will not even walk through the house to the garden without putting a mask on. I’m blessed to have so many people that love me. That far outweighs all the irritations. 


To round up, my latest news is that I am soon to have my PEG J removed. It will be the first time in 5 years that I won’t have some kind of tube hanging out of my body. I can’t wait. I had a chat with the lovely gastro doctor during the week. He told me that my recent barium swallow test had shown that there is an anomaly in the way my oesophagus empties into my stomach. When he takes the PEG out and deals with another couple of bits he is going to insert a tiny microchip that he will attach to the bottom of my oesophagus. That will be connected to a receiver that I will wear for 4 days which will measure the amount of acid going into my food pipe. After I put the phone down I started to laugh. We have the nutty antivaxxers that won’t have the jab for fear of Bill Gates controlling them via a hidden injected microchip and me willingly having a microchip implanted. It must be awful for those people to live in such fear. 


Wherever you are in the world I hope the sun is shining on you and I also hope that despite the physical cost of being ill you also pay attention to the emotional cost and find a way of letting some of the difficult stuff out and let more light in. Be brave and just go for it. You’ve got nothing to lose but so much to gain. 


(The black and white photo is Tricia, the other is in the dark glasses is Annie and the other is me teaching my daughter to ride her bike. It was when I was fit an healthy and still playing football as you can see Lol) 


#worldbloodcancerday







Sunday 16 May 2021

3 lives in 1

The gorgeous fella in the photo was my friend Bert. I met him and his wife Ros when I was 12. They were always so lovely to me. Bert was a very fit bloke and soon realised I was mad about sport too. He invited me to join him and some friends for their Saturday morning jogs. We use to meet up at Oxleas Woods and for a warm up would do a lap of the meadow while chucking a rugby ball at each other that Bert called “the pill”. After this we would then head off into the woods. Bert never went the same way twice. Back in those days there was no such thing as an outside gym. This didn’t stop Bert though. He would find low hung branches to do pull ups on, fallen trees to practice our balance, ditches to jump and stumps to do step ups on. I so looked forward to my Saturday mornings. 


Sadly Bert died nearly 2 years ago. He lived to a ripe old age probably because he had been so fit all his life. Another thing we had in common was our love of motorbikes. He would sometimes take me on the back of his. He would explain about belt drives and other such stuff that sounded good but went right over my head. 


Today I went out on my own to test my new mobility scooter in a more demanding setting. I decided to beat the pathways up in Oxleas Woods once more. It was such a lovely day, as you can see from the photos. I thought of Bert as I was wandering and I wondered how many of the trees remembered me. I came to one bit where there are what maybe railway sleepers over a bit of a ditch. In an instant I was taken back to the number of times I’d run over them in the past. It’s good sometimes to have a trip down memory lane and honour those who have been important to us and touched and enriched our lives. 


I’m sorry I’ve not been so good a blogging or staying in touch lately. It’s been tough on many levels. Physically I’ve been feeling rubbish because I’m struggling to get to the lowest dose I can manage of my steroids. I know I’ll never be totally off them now as my adrenals have packed up, but it would be good to take the bare minimum. Many users of prednisalone call them “the devils tick tacks” They can be really effective to help with some serious problems but then they also cause many serious problems. It’s all a balancing act. 


On top of physically feeling rough, I’ve also struggled with my motivation. As I said in my last blog, I’ve lost my mojo a bit. As it’s mental health awareness week I thought it would be good to blog about it. 


I’ve not had the easiest of lives. I left home around the age of 15. If the police found me and took me back, I’d just run away again. I had learnt that there was more to life than the sum of my experiences and I wanted more. I wanted life in all its abundance. To get that great life I had to endure sleeping in the back of cars at times, as well as sofa surfing. At 17 I was fortunate to get my first home. It was a really grotty bed sit that had mice and cockroaches. To me it was palatial. 


When I was 18 I was really lucky to get my first proper flat. Before then I couldn’t legally sign a tenancy agreement. This beautiful flat was on the old Ferrier Estate in Kidbrook. I was told not to leave my little scooter downstairs if I wanted it still to be there the next day. I would take it up to the flat every night. The first night I stayed there, I was woken by an almighty crash. I went and looked over the balcony to discover a car had ram raided the supermarket in Teleman Square. Despite the roughness of the neighbourhood, I loved it there. 


I didn’t have any qualifications to talk of due to my chaotic home life so I did a Manpower Services Course at Woolwich College because it paid me the amazing sum of £25 a week! As a result of that I started volunteering on what was then called a geriatric ward at the Brook Hospital. While I was there the nurses spotted something in me that I hadn’t yet spotted. They thought I’d make a good nurse. I said I couldn’t do it as I had no O levels. They said they would recommend me. They did this and was accepted to train within the then Greenwich and Bexley Health Authority. A week before my training was due to start I did a newspaper article about young people and the problem of solvent abuse. I was talking from experience as I’d abused glue and gas for 2 years but stopped when I left home as I didn’t need that escapism any more. 


The school of nursing were not happy with my revelations and said I was no longer suitable to be a nurse. I fought them on this and after an in-depth medical and psychological review they then said I could start 6 months later. 


As my life developed I still had challenges and trials and tribulations but I also had some stability and it helped me  stay on an even keel. 


Sadly I had to give up nursing due to a back injury. It didn’t stop me having good jobs though. I worked in various settings including a mortuary, a mental health hostel, a refuge and ended up managing a large Women’s Centre. Then I started my training for the priesthood and for the last year of that I gave up having such a responsible job to work for St John’s Ambulance as one of their commercial trainers. Once I was ordained I worked as a priest in various parish settings as well as being a hospital and finally school chaplain. Not bad for a kid from Woolwich with no qualifications eh? 


I guess all these challenges and experiences helped build a deep resilience in me. No matter what the knock back, I’d take it on the chin and carry on. That was my attitude once I got over the shock of dealing with my blood cancer diagnosis too. It’s also helped me beat numerous sepsis episodes and cope with living a very different life with my physical disabilities that have arisen as a result of living 20 years with cancer and the effects of treatment. 


Coming now to more recent events I think I’ve coped admirably with the restrictions of the pandemic. Due to the fact that I’ve had a stem cell transplant I’m considered clinically extremely vulnerable. It’s been hard not doing things and really horrible not being able to hug anyone, especially my grandkids. For over a year I’ve just got on with it. So why now as things are looking more hopeful for a slow return to normal do I find myself struggling? I’ve had little motivation and very low energy. 


I suspect that it’s in part due to the continued isolation. I’m very much a people person. I get my energy from being with family and friends and being engaged with the world. I love doing new things and finding new challenges I can complete.  I also think that not being able to hug people is hard for me. Another issue is the lack of activity. The main culprit though for my low motivation and energy is that while most of the UK is looking forward to being able to meet up with more people and to eat out or go for a drink, I am still being told to be extremely cautious. The problem is that vaccines don’t work very well in blood cancer or transplant patients. Some trials estimate we might have a 10% response rate as opposed to the 90% that most people get. I’ve been happy to grit my teeth to this point but feel the relentless nature of this situation is now getting a bit much. It’s so hard having no end date and having to rely on the good weather in order to be able to see anyone out in the garden. 


My mood is slowly lifting but I don’t think I’m out of the woods yet. I’m going to have to guard  against encroaching negativity. I will have to make sure I have some nice treats to look forward to with the better weather. I will have to visit places I haven’t been and go wandering on my scooter. I will have to see if I can dream up another project to keep me occupied. Sometimes I feel like my brain is going to mush because of the lack of stimulation. 


One of the things that people learn about me as they get to know me better is that if I’m quiet, there’s usually a problem that I’m chewing over. That’s why I’ve been quite absent from social media over the last few months.  Many people pour out their pain and angst as a way to understand it. I’m different in that I have to understand it before I pour it out. That doesn’t mean I don’t need my friends. In some respects when I’m quiet and withdrawn I need distractions even more. 


This week is Mental Health Awareness Week. Today is also National Nurses Day. I’ve written this blog to encourage everyone to embrace their mental health. It’s ok not be ok. I also post to honour the nurse in me and what nursing gave me as well as say a heartfelt thanks to all the nurses who have helped me through the last 20 years. Also to recognise the amazing people I’ve worked with over the years in my various roles with the NHS. Thank you to all of you for what you’ve done as well as what you will do. You really do make a difference. 


Nurses Day is based on Florence Nightingale’s anniversary.







She was known as the lady with the lamp. Many of you know that I like light in the darkness imagery. I’d like to finish with my favourite quote.  The bloke who first said it was a priest who was dying of cancer. “I have learned that suffering when permeated by love has a transforming effect. When I light a candle at midnight, I say to the darkness, I beg to differ”