Saturday, 21 October 2023

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? 


Wednesday, 4 October 2023

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! 

Tuesday, 19 September 2023

Sign and symptoms of blood cancer






 This month is blood cancer awareness month. My steep learning curve about my rare blood cancer began. In the late ‘90s. I had had abnormal blood results going as far back as the ‘80s but it was not a clear picture. I didn’t know much about blood cancer before being told I had it. Could you name some of the most common blood cancer signs and symptoms? I’ll leave you some space to consider your answer. I’ll list the symptoms at the end of the blog. 


Regular readers will know how tough I’ve found the pandemic. I started shielding even before lock down as our haematology teams were becoming concerned about the new emerging virus. This meant I was locked away from those I love and really felt the void of not hugging my kids and grandkids. When everyone else went back to “normal” I had to carry on shielding. I have an absolutely rubbish immune system and have been known to really crash when I have an infection. My fantastic medical team just told me to continue to be cautious. Summer was better as it meant I could see people outside. If I went any where I’ve had to continue to wear a mask and practice social distancing. Visitors indoors didn’t happen unless the windows could be open and I could sit apart from others. It just seemed to be an endless forced separation. I really didn’t like it. 


I’m July I took a trip to Ireland. Despite all my precautions and help from Irish Ferries to keep me separate from other passengers, at some point I picked up covid. The first day I felt pretty awful. My chest was really painful. Once the specialist antivirals that extremely vulnerable people need were prescribed, I started to feel better. This was a 5 day course. I did a test and the treatment had worked and I was negative. Unfortunately after a couple of days my symptoms came back and I tested positive again. 


Before I went to Ireland I had developed a tooth ache in late June early July. I saw my dentist and had a treatment plan worked out for when I got back. Sadly this had to be put on hold due to being covid positive. While I’m still testing positive the team at Kings have been seeing me weekly to keep an eye in case of any problems. They are so surprised that I hadn’t had covid before. My shielding was obviously good. It’s now mid September and I’m still testing positive. My lateral flow test has a very faint line now so going in the right direction. The PCR is still positive. I’m adding new meaning to the term “long covid”


One of the GOOD things about having had covid is that people can now relax. I’ve had it and it hasn’t killed me. Yes I have a few problems still from it but the BIG worry is gone. The other enormous benefit is this means I can now hug people. I’ve had to wait till this week where my lateral flow is hardly registering. I just wouldn’t want to possible infect anyone. My team told me it’s very likely that I’m not infectious to most people, it’s just my poor immune system having trouble shedding the virus. 


It was so wonderful holding my grandchildren, daughter, sisters, brother and other family and friends. My daughter and granddaughter and me and Maggie all had tears in our eyes. It was such a beautiful moment and one that I will treasure forever and keep locked safely in my heart. 


So moving forward, I will still be cautious. All my family and friends know not to get close to me if they think they have an infection. I will wear a mask in high risk areas but otherwise I’m looking forward to rejoining society. 


All of this is because I was diagnosed with the rare blood cancer Myelo Dysplastic Syndrome in 2000. I had a Stem Cell Transplant in October 2016 and then went on to develop Graft Verses Host Disease. Before all this started I had no idea about these things. I was a fit young woman still playing football. So what were those symptoms I mentioned earlier that took me to see my GP?


Blood cancer symptoms include:

* Weight loss that is unexplained

* Bruising or bleeding that is unexplained

* Lumps or swellings

* Shortness of breath (breathlessness)

* Drenching night sweats

* Infections that are persistent, recurrent or severe

* Fever (38°C or above) that is unexplained

* Rash or itchy skin that is unexplained

* Pain in your bones, joints or abdomen (stomach area)

* Tiredness that doesn’t improve with rest or sleep (fatigue)

* Paleness (pallor)


How many did you get? Please do me a favour this blood cancer awareness month of sharing my blog or just copying and pasting these symptoms and making people aware that these things are pretty non descriptive and can be caused by so many things including stress, that’s why people ignore them. Don’t. If it is the worst, although unlikely, the earlier you know the better. 


As for me I live a very different life to the one I imagined, but I’m still here and breathing. I have much joy and love in my life and I still have new adventures I’d like to go on. For that I’m extremely grateful to my little life saving sister Gail and my fantastic haematology team at Kings and all those who love and support me.

Friday, 1 September 2023

Blood Cancer Awareness Month 2023

September is blood cancer awareness month. You’ve heard lots from me about living with blood cancer and the effects ya of treatment. On this first day of the month I want to put out something different. Living with MDS (Myelo Dysplastic Syndrome) and having a SCT (Stem Cell Transplant)bus a big part of my life but it’s not the only thing about me. It’s so important to love and nurture the whole of you. This video shows very much that I refuse to be put in any box. I hope you enjoy it. I’m the one in the funny clothes  the others are my life saving stem cell donating sister Gail, her husband Jeff and their daughter Jess  The clip is just over 2 mins and you need the sound on  

https://youtu.be/eaQSbnBVnp4?si=U9a_s4PVp5qoy54c


Wednesday, 16 August 2023

Covid finally got me!

















 



I’m writing this on the day that England beat Australia in the FIFA World Cup semifinal. It was an exciting match and I’m still on a high from it. 


For those who don’t know me so well, I’m a football nut. Every time I visit a country I pick up the National football shirt. Then when it’s the Euros or World Cup I can wear whichever shirt takes my fancy and enjoy the competition. 


I’ve recently come back from a trip to Ireland. My oldest and youngest grandchild flew out and joined us for a week. We made the most of it but it was a challenging break. The weather was awful. I’ve been there in mid winter and had better weather. I managed to get the kids to the beach on the last full day they were there. We were all in coats and wellies. They had fun scrambling over the rock pools. 


Another thing that went wrong is that I finally picked up covid. I’ve not had it up till now. The medics were all very surprised by this. It’s bloody typical when I’m up in the mountains of Kerry and the nearest hospital with a haematology unit is 2 hours away. Before I travelled to Ireland last October which was my first trip out in over 3 years, I made contact with the Irish cancer services and Cork University hospital. That stood me in good stead. I rang and spoke to one of the haematology registrars. He was so helpful. He rang Kings and spoke to my team in London. Then he sent a prescription for the specialist medication that clinically extremely vulnerable people need to the village pharmacy. The woman who works there and happens to be our nearest neighbour, brought the medication up to me. What a fantastic service and very quick too in getting me the needed medication. 


Maggie and Sönke had it too. They spent a day in bed. I looked after the kids and made them laugh in my attempts to cook for them. Sönke asked me if I was bionic because I just got on with it. I told him I was used to feeling ill. That makes it easier for me to push on. Also I think the Paxlovid medication helped. After finishing the medication I tested negative. Then a couple of days later I started to feel rough again and sure enough was positive once more. It’s called rebound and can happen to those who are immunocompromised. Maggie and Sönke are clear now but 3 weeks on and I still have it. 


Kings saw me yesterday and told me they want to see me once a week until I test negative. Today I’ve started to cough more and have a tight chest again. I shall keep an eye on what’s happening and get back in touch with Kings if I get any worse. 


In many respects I’m glad it’s finally happened. It’s good that I initially responded well to treatment. I hope it means that my poor long suffering family can stop being so anxious. I will still be careful as advised but not so isolated and cut off from everyone and everything. I need to get back to some semblance of normality. It’s been awful feeling so cut off from the world. 


One of the silver linings to all of this is that, despite being in the same house as 3 positive adults, they didn’t get it. It was so lovely to be able to hug them again. That Kerry airport hug bas they left to go home will stay with me forever. Can’t wait to start hugging more people. 


If the weather and covid wasn’t enough to dampen our spirits in Ireland, we also had a problem with the water that stopped working and bees in the dormer. 


I still have happy memories of playing games with the kids. Pass the Pigs, Yahtzee and Jenga were the favourites. Molly loved going out wearing my wellies which fitted her perfectly. We went on a wander to the “Bat house” It showed me how poorly served disabled people are who want to be more active and out and about. I got shaken to death. Lol. The kids thought it was funny. I really need an all terrain scooter that can get me out and about. The problem is it needs to break down into the car. Also the ones that do this are very expensive. I shall have to remortgage the house. I may say this in jest but it’s a serious issue that disabled people can only do normal things if they can afford it. It’s not right is it? 


Enough of my ranting. At least while I’m recovering from the covid fallout I have plenty of good football to watch. I’m looking forward to Sunday when I hope we will be bringing it home.