Badly timed blip

There’s never a good time to have a blip but some times are better than others. In the build up to Christmas you really need to be on your A game in order to do all the extra things that are an expression of love. 

I’ve been having a bit of an extended blip but I’ve had some lovely things going on too. This image is from St Peter’s Chapel at Bradwell-on-sea. My lovely old parish choir started going to Othona 25 years ago. Othona is a Christian community that is very inclusive and welcoming. I was there at that first weekend 25 years ago. Simon, the choir trainer asked me to take a service of celebrating our unique choir community and all that have gone before us, whose voices we still hear echoing as we sing. 

It was so good to have a creative liturgy to write for this special occasion. 

St Peter’s 

Around this time I also took a funeral for someone I didn’t know where the family were struggling. The woman died in August and she was younger than me. It’s tough to have to wait till November to be able to go ahead with the funeral. I was glad I could help. 

Another aspect of life that has given me much pleasure this year has been being able to have my grandchildren over to decorate the tree. I always did this with my daughter, their mum and she remembers it fondly. When she came to collect them I hadn’t quite finished outside. It was lovely to have all 3 generations putting together the outside tree. 

 

All of this was made possible by the fact that I had Covid from July to Nov and it didn’t kill me! 

Now we move on to the blip. My routine money blood test showed that I’d become profoundly neutropenic. This was 5 Dec. I told the consultant I had a scratchy throat. Swabs were taken and it showed I had flu and covid. I sure know how to have a good time! The consultant asked me to come back the following week. 

In the intervening week I developed a temp. One night I woke up and went to the loo and couldn’t stop shaking even when I got back into bed. I kept spiking temperatures which settled with paracetamol. Then I had awful face, and jaw pain and a horrible headache. It seems I have developed sinusitis. The pain was waking me up at night. It was horrible. 

The next blood test showed I was more neutropenic and my platelets were on 19. This is why I’m so bruised. It also showed my CRP was 155. That’s very high and is a marker of infection and inflammation. I was given a strong course of antibiotics which I’m halfway through now. It definitely improved the face and jaw pain but I still wake up with a headache and I’m still very snotty, which comes in a range of colours. Urgh! 

On top of all this I was told by the ophthalmologists that I needed to have my cataract done. Regular readers will know that worries me more than any other thing. I have bone marrow biopsies with no sedation and no anxiety but because I’ve only got one good eye, I’m very protective of it. The problem is it’s getting really hard to drive at night and my hospital appointments are long. I often drive home in the dark. The consultant has decided it can be done as a priority. I will also have a senior surgeon doing the procedure because of my complicated medical history and the fact that only my right eye works. It will all be done during the next 6 months. Please pray or keep everything crossed for me. The picture is the drops I had to assess my eye health.

So coming up to date; today’s bloods show a neutrophil count of 0. My platelets are now 11 and my Haemoglobin is 80. I need platelets and blood. I also still have flu, covid and a pseudomonas infection. Oh dear! That’s a bit pants just before Christmas. I’m gonna have a top up of platelets today and I have to come back tomorrow for some blood. They also may want to keep me in for a few days to give me some IV antibiotics. They will decide on that overnight. 

Despite all that I’m keeping in good spirits. I’m just a bit weakened and even more frail than normal. 

I’m really pleased I managed to get the Christmas decs up. At least I have beautiful twinkly lights to look at each night. 

I hope wherever you are and whatever you are carrying inside of yourself or struggling with, that you find some hope and peace and light in the darkness. 

Merry Christmas Xx

The gift of life in the form of a bag of platelets 

An early Christmas pressie to keep me alive. A bag of nice juicy lifesaving red cells 

All Types Can Save Lives!

One of the things I’d hoped for after having my bone marrow transplant was that I would get my active life back and I would be able to ditch my chest of medicines and medical appointments. Sadly that didn’t happen.  I take more medicines now than I ever have. I had also hoped that I would have less visits to the hospital. That hasn’t worked out either. Sometimes I’m still there weekly. The biggest gap I have is a month between appointments. It may not be the life I’d hoped for but the fact that I’m still here is a miracle! For that I am very grateful. 

One of the reasons why I only have a months gap between appointments is because I have a specialist treatment called IVIG (intravenous immunoglobulins) This treatment gives me some antibodies that I’m lacking in order to be able to fight infection. Before I had the treatment I kept picking up various infections. I would have my flu jab every year but still managed to get flu every flu season. One year I had two flu infections at the same time. The infections often ended up with me needing a lengthy hospital stay. I remember one time when I had pneumonia, it took me 45mins to make my bed. I’m a stubborn bugger! 

IVIG is an expensive but valuable treatment. It saves lives including mine. It’s made by collecting antibodies from wonderful blood and plasma donors. Antibodies are developed when healthy people come into contact with infection. They are part of the immune systems healthy response. Due to all the treatment I’ve had, I don’t have this response. 

When someone donates blood, that donation can be used to help three people.  Each blood donation is broken down into its separate component parts using a centrifuge. Red blood cells, plasma, or platelets are extracted using specialised machines.

People can also donate plasma. That takes a little longer than a blood donation. Plasma is taken and red cells are given back all done by a clever machine that spins to separate the good stuff. This process takes about an hour.

Plasma is the part of your blood that carries platelets, red blood cells and white blood cells around the body. Plasma makes up approximately 55% of your blood, and contains antibodies, known as immunoglobulins, which fight infection. These antibodies are made into medicines to help people with rare diseases, immune disorders and genetic conditions. By giving plasma you could help build a person's antibodies, help to heal burns, protect pregnancies, and help babies' hearts to continue to beat.

The NHS needs more plasma donors in Birmingham, Reading and London but many people don’t realise they could donate.

 

When they do come along, these amazing donors come from all walks of life and plasma is used to treat more than 50 diseases.

 

NHS Blood and Transplant is running the ‘All Types Can Save Lives’ campaign during November because many people don’t realise they could donate.

Plasma donation is similar to blood donation, except a machine next to the donor filters out the plasma. The donor then gets their red blood cells back, which means they can carry on with their day as normal.

As I finish this blog I want to give a big shout out to all the donors who have given blood or plasma.  You have saved my life over and over again. To you it’s just one day that is slightly disrupted. To me it gives me more time with my family. It gives me the chance to see my grandchildren grow up. It gives me the chance to put back into the system that has worked tirelessly to make me well. This thank you from me also comes from all those who know and love me. 

If this blog has moved you, maybe you could consider becoming a donor. How amazing would it feel to save a life? 

You can book an appointment at www.blood.co.uk/plasma

 

7th rebirthday.

 

Today is my 7th rebirthday. The photos show the transplant joinery through its highs and lows. It’s hard to believe that 7 years ago my little sis gave me the amazing gift of life in the form of her stem cells. Followers of my story, friends and family know it’s not been an easy road to travel and it still isn’t. The fact I’m still here though is amazing. 

I sometimes wonder why I’m here when so many great and good people have succumbed either to the MDS or the effects of treatment. It makes me look at life differently. I just don’t sweat the small stuff. I can smile at the beautiful sunset. Go out just to see the moon, watch the clouds and people walking by, enjoy the warmth of the sun and feel the gentle breeze on my face. I could go on but you get my drift I’m sure. 

Before all this, even though I already had the MDS, I used to take on life at break neck speed. If I needed to do a 12 or 14 hour day at work, I did. I also had my church commitments at the weekend where I’d often have a sermon to write or service to take. I neglected my family at times because I felt an enormous responsibility to do all the things I’d said I’d do. I have a strong Protestant work ethic and it’s not always a good thing. 

When I had my transplant, I thought I’d give up a year of my life and I’d get back to work. Today 7 years on I’m still nowhere near to being able to go to work. However I’ve let all those shoulds and coulds go. I live life more slowly. I have all the time in the world for my family. When life’s irritations come along I just think “well this is different” and I like different things. For example, my home currently has no heating or water due to a leaking pipe. It’s been this way for just over a week. I am wearing fleece lined snow trousers and 4 tops. The problem has been diagnosed now and we are just waiting to find out what the insurance are going to do. 

As you can imagine, we’ve had offers of help from family and friends, some of which we’ve taken up. It’s hard to stay too far away because we don’t know when and who are coming to sort this out. It’s further complicated by my partner starting jury service next week. Some people would be really stressing about all this. I just think “sh*t” happens and it will get better. I also know it’s a 1st world problem. If I had no way of keeping warm or getting water like those in exile, refugees of many nations, the Palestinians currently caught up in the conflict created by the terrorist actions of Hamas and an overly aggressive response that speaks more of vengeance than justice. Most Israelis and Palestinians yearning for peace. Why oh why can’t that voice be heard louder than the fear and warmongering? It puts my challenges into perspective and I never forget how blessed I am. 

This blog marks my 7th rebirthday but it also marks my commitment to live in peace with all that my body throws at me as well as strive for peace in the world and the thing about me is I’m foolish enough to believe I can do that and make a difference. Fancy joining me? 

Important anniversaries

 

A few important anniversaries have occurred recently. The first one was last Friday. On this day 20 years ago I was ordained in Southwark Cathedral. 

I remember that deeply spiritual moment when the bishop laid his hands on my head and I could feel my soul sigh. I closed my eyes, which is really unusual for me, and I knew I’d finally come home to the place I was meant to be. 

I served my title (trainee vicar) at St Saviours in Eltham. I already knew Wendy, AKA the Pink Vicar, who was the Priest in charge of the parish. She said something really valuable to me at the start of our working together. She told me I had the right to learn from her but I didn’t have to become her. This was good news because although we have loads in common, we are different people. There started a heathy and nurturing working relationship that sustained us both. 

The congregation took me to their hearts. They loved my funny ways including walking down the aisle on a pair of stilts to illustrate stepping out in faith. I was in full robes at the time too. Lol. Another happy memory that raised an eyebrow was when I handed out chocolate at the communion rail on Easter Day. 

After a year of being a deacon, I was ordained priest. I was loving being a curate at St Saviours but I wanted more. I realised I should have put myself forward for full time ministry. My lack of confidence about my academic ability had gotten in the way. I realised I was wrong and I wanted to swap to full time stipendiary ministry. I was put through my paces once again and sailed through the process. I was also able to get a a job as a chaplain at Lewisham Hospital with the Bishops permission before my transfer to stipendiary came through. 

I had 5 happy years working with some amazing patients, relatives and staff. Our hospital was one of the first to offer baby funerals to any parents experiencing any form of pregnancy loss. I remember one very sad case. A woman contacted me after the Alderhay scandal over the keeping of specimens. She told me she hadn’t wanted any funeral at the time of her miscarriage and she went on to regret that. She wondered if the slides were still at the hospital that were taken from the foetus. I was able to locate these slides and her and her husband came in and spoke at length to me about where that were at. We decided to have a small funeral service at the crem for all that remained of their baby. I was able to get a tiny cardboard coffin that I put the slides in. The service was only 15 minutes but it was beautiful and very moving. The family contacted me several weeks later and said they felt so much easier with themselves now and they thanked me for honouring and giving voice to their grief. 

It was an amazing job that put me in the very privileged position of standing at the point where the love of God met the mess of the world. I flourished in it and was able to be really creative including becoming part of the palliative care team and attending all crash calls while on duty. I was changed by that experience and hold several precious memories deep within my heart. 

As my health deteriorated I needed to have a rethink. You know the best way to make God laugh is to tell her your plans. My next move took me back to school. I couldn’t believe it. I’d left home and school around the age of 15. What on earth did I know about schools. Our God has a good sense of humour so off I went to be Associate Vicar at St Hugh’s Bermondsey and Chaplain to St Saviours and St Olave’s School. Despite my misgivings God and the Bishop’s faith in me proved to be accurate. I loved it. I went from dealing with horrendous trauma and call outs in the night to mopping up the tears of children whose rabbit had died. I learned that if you take children’s fears and anxieties seriously, even if they seem trivial, they will come back to you with the big things. 

Sadly for me the split nature of the role meant I was working crazy hours. It felt like I had two full time jobs. I didn’t have any down time. When the school was quiet, the parish was busy and vice versa. Despite loving what I was doing and meeting some amazing people when I was asked to take on a full time school chaplaincy I jumped at it. After 3 years I said a tearful goodbye and headed off to Maidstone. 

My new job was to create a Christian ethos in a school that wasn’t previously Christian. They wanted someone who could cope with sorting this out when some may be hostile. I think they also liked my unorthodox Rebel Rev ways! Again I loved it. I enjoyed the challenge of making the love of God real to all I encountered. Chaplains are there for people of all faiths and none. I’m happy working that way as I think that’s the essence of what’s good about believing in a God of love. 

It didn’t take long before the kids, their families, staff and governors all started using me and seeing the value of having someone like me around. Every break and lunchtime I had a chapel full of kids. It was great fun and there was never a dull moment. I learned so much and built on my knowledge of education already gained from my previous role. I was used to mediate with angry parents, to hold restorative justice meeting between kids who had fallen out or staff and kids or staff and staff. My pastoral role and gifts shone and excelled. I was asked to give a speech every year to the prospective new parents about what a caring school we were and how we’d look after all of their child’s needs not just not the  academic ones. I spoke at Chaplains conferences about changing the ethos of the school. I was well respected all round and again proved the people that suggested me for the job had got it right. Just to be clear I did interview for the job too. I wasn’t just slotted in. The day of the interview I was feeling really ill. My partner was away so I asked my mate Anna to come with me in case I became too unwell to continue. When we got to the venue I was welcomed. The interview was on the first floor. At that point I could still manage stairs but as I was climbing the stairs I was really struggling to breathe. I got in the room and thought I was going to pass out. I spotted the water left for me and took a big gulp. I started to feel a bit better. I don’t remember much about the rest of the interview. When I left I went to the cafe next door where Anna was patiently waiting. I told her I felt dreadful and we needed to get a taxi to A&E. Within a few hours I was admitted and given an emergency blood transfusion and put on an HDU ward. The next day I was diagnosed with a burst duodenal ulcer. How I got through that interview I’ll never know. The memory of it makes me shake my head and smile. 

Sadly after 5 fantastic years I was made redundant. The school didn’t want me to go, nor did the kids or the parents. Sadly education is very badly funded these days. Many academies take over in a blaze of glory but then have to make loads of redundancies. While some get richer, the kids suffer. This has happened over and over again all round the country. Pastoral teams and student mentors are disappearing at a rate of knots. Over worked teachers then have to do all the pastoral stuff at the same time as being under enormous pressure to keep grades up and tick all the boxes that Ofsted requires. I won’t rant any further but it’s a very sad state of affairs. 

As it turned out, the redundancy came at the right time. I left in the summer of 2016 and had my stem cell transplant in the October of that year. As things stand, 7 years later, I’m still in recovery and unable to work. 

I’ve had such deep and rich encounters through my ministry. I’m so lucky I found my calling. What saddens me is, since I’ve been unable to work or go to church, I’ve been allowed to fall off the edge. Who cares for the carers? Initially after the transplant I wasn’t well enough to go. Then the pandemic hit and it wasn’t safe. I feel very far away from the establishment and the formal structures. My relationship with God is ok but I know these things need to be nurtured by being in fellowship. It makes me really sad that at this 20 year anniversary I’m not able to exercise any formal ministry. I could now do some bits and bobs physically having survived a recent first covid infection but nobody ever asks apart from the odd funeral. Even though I couldn’t do things in person, I could still write prayers or offer support via zoom. No one tried to keep me connected. I don’t know where to go next. I don’t like this feeling of disillusionment but I have to acknowledge that’s where I’m at. “Faith is reaching your hand out into the darkness and finding it held.” 

I mentioned at the start that there were two important anniversaries just now. Today is 8 years since my lovely chosen mum Marlene died. I know she’s been close to me today. I had a couple of comforting signs. The nurse I saw today was called Marlene. Also a conversation with a friend later ended up with her saying something that Marlene always said. It was so nice to have these reminders but it’s a little bittersweet. I could really do with a chat with my “mum” just now. My head is full of all the above and I have to find a way through it. Marlene would always help me find my way. Love and miss you Guapa May you continue to rest in peace. 

I saw my respiratory consultant today. He thinks I may have long Covid. Sigh! Great eh? My lung function is slightly reduced from the last one but that’s understandable given my recent Covid infection. I’m lucky it’s not been loads worse. 

I’ve found writing this out to be quite emotional. Thank you for “listening”  God bless this mess!