Saturday 22 October 2022

Body Story



















Body story

Let go of the idea of perfection — you are not perfect, you are real. Let yourself be flawed, and allow yourself to make mistakes. Recognize that you’re not always going to have it all together. Don’t apologize for being broken — every time you break you become a little more alive. Every crack tells you a little more about yourself — your strength, your courage, your tenacity — what you’re made of. Do not hide these pieces from the world, they are a part of who you are. You see, the most beautiful people are beautifully broken. Their hearts are heavy but they love the deepest. They have seen the dark but they appreciate everything that shines. They’re compassionate, understanding, and empathetic. Beautiful hearts just don’t happen — and you my friend are going to show the world just how beautiful you are.. ~ Bryan Anthonys


I came across the above recently and thought it was a really good way to express what it’s like learning to live alongside a cancer diagnosis. Living with cancer is only part of the story though. For me I’ve had to learn to live life differently because of the impact of treatment on me too. 


Today marks 6 years since I had my life saving stem cell transplant. Before I had my transplant I was working full time. My health was slowly deteriorating and I would end up in hospital at least once a year with a bout of neutropenic sepsis. I could and did become very sick very quickly. After being treated I would slowly claw my way back and return to work. As time went on the bouts were becoming more frequent and it was taking me longer to bounce back. My team decided it was best to have the transplant as one day I would not bounce back. 


A transplant is no walk in the park. It takes a whole morning or afternoon to go through the consent for the procedure. It’s a sobering process as you hear one thing after another of what could go wrong and ultimately cause life changing disabilities or death. The people offered a transplant are those who will likely die if there’s no intervention, so really the choice is to gamble on the transplant to regain you life before cancer or to take your chances and slowly decline until an infection sees you off. 


Once a transplant is decided you need to have a load of tests to make sure you are well enough to survive the process.  At the same time they are taking samples to see if there is a suitable match on the registers. For me I had an unusual haplo group so didn’t have a 100% match. My lovely sister Gail came forward to be tested. We were warned there is only a 25% chance of a match with a full sibling. As Gail is my only full sibling, we were both on tenterhooks waiting for the result. Luck was on our side as Gail proved to be a match. We were both ecstatic about the news as were our partners and family and friends. The picture of us on the bike was taken when we went out for a celebratory meal the day we got the news. 


I went into hospital on 10 October 2016 and had my first bag of chemo on the 11th which was my 25th anniversary with Maggie. Maggie and Gail came every day. They were an amazing support and tower of strength for me and each other. We were lucky in how it turned out as Gail had recently had spinal surgery and so was off work while recovering from that. It meant Gail and Maggie could see each other and travel together during this arduous and intense time. 


As I received more and more chemo every day I became weaker and felt grim. Sometimes in situations like that when you feel absolutely dreadful all you can do is just breathe and get through it moment by moment. Day by day is too long, sometimes it’s just hour by hour or even minute by minute. Maggie, Gail and I settled into a routine. We’d watch the quiz shows or listen to music every afternoon. They’d help me if I hadn’t had the strength to get showered. Despite the intensity of it all, it was a time of real  closeness and bonding between us . I still cherish those memories. 


I also had a tower of support coming into me every day via social media from family and friends. People were so creative in their outreach to me. I was really blessed by the outpouring of love and positivity that came my way. 


Recovering from the transplant hasn’t been a walk in the park. I ballooned to 72kgs as a result of being on high dose steroids. None of my clothes fitted me any more. I developed GvHD (graft verses hosts disease) My skin was painfully itchy, my muscles and joints became stiff and sore. My breathing was affected. I had serious hearing loss as a result of some of the powerful drugs. My liver wasn’t happy and my mouth and eyes were very sore and dry. I also found absorbing food a challenge and had to have a NG tube and eventually a PEG. 


Now on my 6th rebirthday, I can say I’ve learned to live with lots of these issues. Some have improved but in general I would say my body doesn’t function well. I may have a crap body but I have a six pack spirit. At one point when things were so tough my consultant asked me if it was worth going through the transplant. At that time I said to her no because I’d felt awful for years and was dragging myself through life. Today I’m happy to say I don’t feel that anymore. My fantastic team at Kings have given me the time to see my daughter raised and settled. It gave me time to be alongside my four delightful grandchildren. It gave me extra years with my long suffering family and friends. These days I relate to the World differently. I let go of the life I thought I’d have and I now embrace the one I do have. 


You never know what medical breakthroughs with come along. I do my best to keep myself active and interested in the world. My brain still works even if I can’t physically work. I just hope that one day there will be an intervention that gives me a better quality of life and who knows it maybe some limited form of work too. I choose to continue to live in hope. 


For now I celebrate the small victories. I’ve been shielding for nearly 3 years due to Covid. I’m fortunate to have a family home in Ireland in the Kerry mountains. Not to be in that lovely house amongst the spectacular mountains and beautiful beaches has been hard. I’m not one to sit back on my laurels. I contacted the ferry companies to see if they could help in keeping me safe and away from people on the crossing. The disability team were fantastic. They told me what would be the best ship to book. They said they would arrange for us to be boarded early and kept away from the crowds. 


Maggie and I were slightly anxious at attempting this. We boarded at Holyhead. The wonderful staff were true to their word. I was boarded first and taken in the lift before others came along. We had booked club class as that is often less busy. A really friendly woman welcomed us from the lift and said that Irish Ferries would like to offer me a complimentary cabin. They felt this would be safer for me. I was blown away by their thoughtfulness and kindness. 


As we were arriving and before people had been asked to start moving to car decks and to foot passenger exits, we were escorted down to the car deck. No one was around. It was strange being on such a quiet and empty car deck. The friendly and helpful young man talked to us from a social distance until it was time to get in the car. I can’t tell you how relieved and impressed Maggie and I were with Irish Ferries. They really deserve some love and respect. We are living through challenging times. Customer service in many organisations is at an all time low. People can be quick to complain. I think it’s also important to be quick to compliment too. Thank you from the bottom of my heart to Irish Ferries who made my soul smile and physically and emotionally gave me a real boast. 


Being back in my “happy place” has been a real tonic. It’s been great to spend some time with my sister Sandra and her husband Terry. They came out and joined us for a few days. They coped very well with the need to have windows open and wear masks. It’s been lovely to see and catch up with some of our Irish family and friends too. It’s been a joy to be back in such majestic scenery. It just makes you breathe easier. 


October 25th is World MDS Awareness Day. What MDS UK and other blood cancer charities are doing this year is to raise the issue about how some people are not told they have a form of cancer. MDS can be low or high risk. The various aspects of your blood work and bone marrow results indicate what’s the best treatment for you. Many years ago MDS was called a blood disorder, then it was called pre- leukaemia. After this it was known as bone marrow failure until recent times when it’s defined as a blood cancer. MDS affects mainly older people and many of them are on what’s called ‘watch and wait’ Some of these people with low risk MDS are not always told it’s a cancer by their local hospitals. MDS UK and the other groups are launching a campaign this year to get some consistent labelling and not to shield people from the reality and possible ramifications of having a blood cancer diagnosis. I know from my time working as a nurse and more latterly a hospital chaplain that people will worry about receiving a cancer diagnosis whether you tell them or not so you might as well tell them. Also those that don’t want to talk about it or accept it will make their wishes known. Many people prefer to know and to get good quality info to support them. Some may want to put their house in order. We need to treat people like the adults they are and not make decisions for them. I feel quite strongly about this so I am right behind all those making a noise about the issue this year. If you are realty scared and worried about a new diagnosis of MDS, please shout and ask widely for information and support from the hospital as well as patient support groups. There are also Facebook groups where you can chat to others who have been down this road before you. There are no stupid questions. Keep asking away until you are satisfied. I’m still here 22 years later and there are improvements in knowledge and treatments all the time. 


To finish off on my transplant rebirthday I’d like to say thank you to each and every one of you that make a difference in my life. Here’s to whatever comes next! 




Sunday 21 August 2022

Football crazy














haven’t written a blog for a while so thought I should get down to it.


I really enjoyed the recent Women’s Euro’s. England had a fantastic tournament and I found the final quite emotional. For those that aren’t aware of my background, I played football from a very young age. At primary school I played with the boys as I was better than they were. I had short hair so they all thought I was a boy any way.

When I went to Plumstead Manor Secondary School I was not happy. My parents chose it as it was an all girls school, so no football. I agitated constantly about including football in the curriculum. I was very good at all sport so my PE teachers would have to listen to me going on and on about it. While I was doing this I played endless hours of football on Plumstead and Winns Common. In my final year 5th or year 11 depending on how old you are, they finally started playing football.

My parents had issues with alcohol and I spent a lot of time hanging about pubs and clubs. Sometimes if there was space in the car park or a spare blank wall I would kick the ball about. It gave me something to do while I waited. A bloke called Jim I think, saw me and said we have a girls team at our youth centre. So off I went to St Peter’s Woolwich and joined my first girls team. After this I went on to play for Millwall Lionesses and then Charlton.

Football gave me a release for all the pent up emotions I had because of my troubled home life. I used to imagine the ball was my dads head sometimes and took great delight in thumping it into the back of the net. I played on the right wing because I was so fast. When I ran down the wing with the wind whistling in my ears I felt free, like a bird floating on the air.

I played until my mid 30’s when I was diagnosed with the rare blood cancer myelo dysplastic syndrome. I was devastated not to be as physically active as I used to be. I ended up putting all my trophies and medals away as they made me feel sad when I looked at them. Eventually I gave myself a talking to and reminded myself that at least I’d had that experience in my life.

To keep me connected to the game I decided that every time I went on holiday I would buy the football shirt of that country. I have amassed quite a collection. When I’m watching international competitions I get all my shirts out and wear the strip of that country if I have it. It’s my way of not getting into the horrible tribal nature that happens in mens football. Football is a sport for all.

In my last job I discovered that a disability team was hiring our school sports hall for their training and practicing. I went along and was so impressed by what they were doing. I volunteered my time for a while. I also used to drive our school teams to their matches. I used to joke with the kids and say to them “how many school football teams have God on their side?” Lol. They loved it.

One day I decided to do a football based assembly on issues of equality. I was able to share Farah Williams story. She was homeless when she began her football career and no one else knew. She went on to play for England and was regularly commentating in the recent Euros. She is a fantastic ambassador for the homeless football teams and tournaments.

Football is so much more than the bad press it gets. I am so proud to have been part of the pioneers who paved the way for the women playing today. We were banished to council run pitches like Hackney Marshes or Clapham Common. We had to put up with sexist comments from blokes passing by. Some would say “We’re only waiting for you all to change your shirts at the end” We had to pay our own fare and subs train twice or 3 times a week as well as play matches. We took it in turns to wash the kit. The women today have a very different experience and I am so pleased to see the popularity it’s gaining.

I had to opportunity to go to one of the Lionesses match’s. Sadly because I am still shielding, I couldn’t go. I hope that at some point very soon I can get back to accessing live events and joining the rest of society. For now I live through the successes and lives of the people and friends around me far and wide. I’m proud to say that my eldest grandson got 2 A’s in his A levels. My daughter also had the good news of a new job today and the final thing to celebrate in that after a month of not only no bath but then no shower, I can finally stop handing pegs out at the door and get clean!

For those that aren’t so keen on football but like to follow my story of MDS and the transplant and GvHD journey, here’s my latest news. Over recent months I have reduced my steroids to the lowest maintenance dose. I have to stay on them for life due to adrenal insufficiency. I also had to take less of my immunosuppression because I was on a strong anti fungal drug for my lung infection. The two drugs didn’t mix well, hence the reduction. Sadly my immune system went crazy and I ended up getting psoriasis. I had this as a teenager but it went during my twenties. My sister Gail also has it. Hers has stayed with her. I used to have it on my elbows and knees and knuckles. This time it’s all over my torso front and back and up into my scalp. It’s being treated and is lessening. Also my immunosuppression is back to it’s usual level. Hopefully it will go in a few months.

Another challenge I’m facing is that without steroids I have no appetite. I was hoping it would have improved by now. At my heaviest on large doses of the drug I was 72kg. I didn’t recognise the face staring back to me in the mirror. Now I’m 48kg. Thats a bit too light though. Fingers crossed my appetite comes back. One of the advantages of the reduction of steroids is that I look more like myself again. When I was bigger  as I said I didn’t recognise who was staring back to me in the reflection. I felt frumpy and old. Now I see my fit 17 years old self with 40 years of experience etched in my face. I may have the body of a 95 year old but weirdly I feel younger again. When I felt old and frumpy before, it just wasn’t me. I’ve always been little and slim as you can see in my footballing photos. It’s weird how these things get inside of you. I wouldn’t say I was vain and yet being bigger had an impact. It’s worth noting that and looking at why we all feel these insecurities. Are we comparing ourselves to airbrushed images? Are we succumbing to stereotypical images? I know there was nothing I could do about it. I know I needed that treatment. It didn’t stop me having my photo taken and going out and doing things because, fortunately for me, my self esteem is good. It’s healthy to acknowledge that disquiet though.

Where ever you are and whatever you are doing I wish you a good day. If it’s not so good a day, I send you all the love and hugs I can muster.

Wednesday 20 July 2022

The abuse in our education system


There is a Chinese curse. It says “may you live in interesting times”. That is certainly true of our current times. Wars, cost of living, Trump and Johnson playing with our democracies, pandemic, Brexsh*t. On top of all this we have chaos in our car industry and also in our airports. Just to round things off we also have a record breaking heatwave. 


I live with the consequences of cancer and the effects of treatment. It makes me look at things differently. I have four adorable grandchildren and I look at the world through their eyes. I was at each of their births and held them when they were just a few minutes old. It was such a joy to sing to them as I welcomed them to the world. I told them what a wonderful world it was and that they will always be loved. 


Before my bone marrow transplant I worked in secondary schools. One of the amazing facts that blew my mind was that children were being educated for jobs that didn’t yet exist, such was the changing and developing pace of technology in employment. I worked in two very different schools. One was an outstanding school in inner London amongst some of the biggest council estates in the country. The deprivation and gang culture of Elephant Castle and Bermondsey were rife in the community. In the school the young people were met with love and respect and they responded well to it. There was a very well resourced pastoral care team. Discipline was firm but fair. All mobile phones had to be handed in before school and collected after. If a student was found with a phone it was confiscated till a parent came and. collected it. If a detention was set the teacher that set it and a member of the senior team would meet with that student and talk about what happened. The young people responded well to this all round package of academic excellence and care. Behaviour was not an issue in this school. 


My next school was in Kent. This time an academy chain took over a previously failing school. Some of the behaviour was problematic. Some staff and some students couldn’t really be bothered. 


I was asked to be part of the team to change the ethos of the school. The young people flocked to my office as word got out that I could be trusted. Some big and angry boys would come to me having punched holes in walls just so I could help them calm down and give them a much needed hug. Girls would also come telling me of chaotic home lives and various teenage traumas. 


Alongside changing the ethos, there was also a new school to be built. I decided on the final spec for my chapel. It was situated right over the entrance to the school. When the students were asked in a questionnaire what they thought of the chapel, one student said “Its like the beating heart of the school” The head teacher endorsed that observation. We had a successful Autism Resource Centre, there were student support workers. There were lots of teaching assistants. Alongside this there was a fantastic SEND department, a counsellor, a careers officer, specialist safeguarding officer. This was all under the banner of a well run inclusion department 


On one occasion a student came to me for our usual chat. Her dad had died and she needed extra support. Her mum was on benefits and there were other children. As she went to leave she said to me “I didn’t have any dinner last night” I asked if she was in trouble with her mum. She said no but her mum had been sanctioned by the Benefits Agency and they didn’t have any food. I asked the student to come back to me at the end of school as there was something Important to do. She came to me very quizzically and I told her I was giving her a lift home. I then pulled out 3 bags of food. She was a bit scared and said mum had told her not to say anything or else social services would take the children. I reassured the student and said it was our secret. I explained that my work was confidential. 


When I got to the house there were sheets up at the windows and no carpet on the floor. I explained to mum that my role was very confidential and no one else would know about the donation. I asked her to contact me if there was any thing she needed in future. 


The student kept coming to me and then I arranged a referral to a fantastic child bereavement charity. They would take young people six months after their bereavement and do a two day workshop. Mum didn’t have a car or the confidence to do the parenting aspect of coming at the end and hearing and seeing what they’d been doing over there 2 day workshop. She asked me if I would take her daughter to a fro each day as it was a few miles away and not served well by public transport. I spoke to the head who gave me permission. That workshop was so beneficial for that young person. She was so different after and did well for the rest of her schooling. It was all these small acts of kindness that made such a difference. 


I lay this all before you because I want to show the contrast between what I did up to 5 short years ago and the lived experience of watching my wonderful grandchildren suffer from draconian behaviour policies, poor teaching where one size fits all, lack of pastoral care and support and a very inflexible and harsh system. This has totally destroyed their love of learning. My eldest grandchild is 18. He is a very smart cookie. He got 7,8 and 9s for his GCSEs. He refused to stay in the school any longer and chose himself to enrol in a good Local Authority school for his A levels. 


He said the teaching was much more thorough in the new school and they finished the curriculum before the end of term and had plenty of time to revise. In the previous academy school he was tested on things that he hadn’t been taught because they ran out of time and actually failed to complete the curriculum before his GCSE’s.


My next grandchild has some special needs but is very private. His image is important to him and he is quite sensitive. He likes to fit in and go undetected. Unfortunately he was involved in a horrible prank in the playground. He didn’t want to go back into his lessons because he was traumatised and humiliated. He was out of lessons for 4 months. In the end I had to make a complaint to the local authority. They stepped in and we moved him to another Local Authority school. My daughter gave this school the same info as she gave the previous school. He was at the previous school 4 years and no phone calls home of concern. Within weeks of starting the new school staff were in touch with my daughter about some concerns over his concentration. They got him through his GCSEs which was amazing. He is not academically made but is in no way stupid. He should get enough qualifications to take him into college or an apprenticeship for an electrician. 


My next grandchild is wired very differently from his brothers. They are fairly quiet and reserved. He is not. He has a very strong sense of justice and will stick up for himself and others. The school have a policy of no dissent. As he answers back he gets in trouble. He often has detentions and ends up in the isolation room if he fails to comply. If he is caught doing something he shouldn’t, he doesn’t argue back and takes his punishment. In the isolation area that they call DFL distraction free learning, he will be there for 6 hours with poor quality worksheets and not all the subjects either. At one point he had a good run and wasn’t in DFL. One of his core subject teachers complimented him on how much he had improved since not being in DFL so much. Just that fact alone shows that DFL doesn’t work and in fact detracts from students learning. He is not a bad kid. At home he is a dream. He is kind and considerate and very funny and friendly. I know he will go far despite the bad school system he is the victim of. 


My professional experience of many many years of working in trauma and deprivation tells me that silencing children is dangerous. Abuse occurs in silence. Students have to be able to express themselves. If he was allowed to make his point, he would settle down and get on with it. Just like at work. Sometimes we have to say to colleagues, “I disagree, I don’t think you have the full picture” That’s all he wants. Just for things to be seen from his viewpoint. 


My final grandchild is in a state school. She loves it. They are always doing innovative things and the children have fun. Learning should be fun because when it is, you learn more.  One day I asked her how school was. As quick as a flash she said “I didn’t do too well” I asked her what she meant and had she had a hard test? She replied “I obviously didn’t learn enough cause I have to go back tomorrow!” Her humour and cheekiness show how comfortable she is with her school. They didn’t have to go in yesterday because of the heat but she went anyway as the school was open. I feel dreadful that I wasn’t able to do enough to keep my older grandchildren's love of learning alive. 


Today is the last day of the academic year there are often high spirits as the young people look forward to a long summer in front of them. When I worked in both my previous schools the final assembly had a light and celebratory feel. All were happy to be finishing staff and students alike. Today my grandson told me that his cohort won the chocolates for having the most points. Everyone was cheering and whooping. I know that when students respond like that it can be very loud. I always took the whole school assembly at the end of each term. I would let the kids let off steam then get them to hush and they always did. I’m small and could be seen as a pushover as most kids were bigger than me. That never happened because they respected me. When working in schools it’s vital that you learn how to take the heat out of situations. Your actions as the adult dictate whether the situation escalates or calms down. All teachers and youth workers have to have this emotional intelligence so as not to inflame a situation. In the assembly today when my grandson and his friend were clapping along with everyone else the two of them were singled out. They were told they were being disruptive and interrupting the assembly. As mentioned earlier, this school has a no dissent policy, these two were astounded as they were doing the same as everyone else. The girl tried to explain. In response the teacher at the back started shouting. His actions disturbed the assembly. He yelled at the girl to get out. I know this child. She is a good kid. Never a problem. She is bright, does her homework and is a really nice and friendly student. It makes it all the more astounding that she was ordered out of the assembly. Does that sound like it was well handled? Sometimes I just despair. To continue to make the situation worse, this teacher phoned the girls mum and said my grandson was a bad influence on her. How can that be as he complied and didn’t argue and was left in the assembly. Sometimes I just have to shake my head in disbelief. 


When United Learning Trust took over control of the school they promised many things. They said they had fantastic SEND provision and were concerned for the whole child’s rounded education. They said they had no plans for changing things. The rot started after the first year or two 32 staff were made redundant. There were some voluntary redundancies. The support staff team was decimated and reduced to 12.  The behaviour policy was changed and was very rigid. Students had to line up in the playground before going into school to have their uniform and equipment checked to make sure they were “ready to learn” They were also told that they had to track the teacher with their eyes and there was no room for dissent. The policy for behaviour is warn and then remove to DFL. No emphasis on reconciling the situation. There was certainly no restorative justice in sight. 


ULT also have a policy of centralised lesson plans and everyone has to follow the same sequence. That totally stifles creativity. One thing I’ve learnt about good teachers is they are always very creative and no matter what government policy is in vogue they will find a way to teach their students. What puzzles me though is why they don’t get through all the curriculum before the end of term? 


Another question is why do they think they have such a good SEND department. My grandson who had some additional needs was never asked if he needed anything. My daughter had given detailed information about his condition. In four years no calls. When he transferred to the new state school the SENCO phoned to clarify things with my daughter and got a more accurate understanding by doing so. Within weeks they had picked up that he wasn’t concentrating well. I don’t think he changed but the two approaches from the different schools is quite stark. 


I’ve also listened to some of the other parents and children and heard their dissatisfactions. Inconsistent teaching, unqualified teachers, supply teachers. The psychology department was drastically cut. I know first hand from an A level student, the impact of having many different teachers some who were teaching out of subject and how detrimental that was to him. 


I know of children with a diagnosed autism spectrum condition who have not been picked up by the specialist autism unit in the school and not given any extra help or support. Teaching/learning assistants have been taken out of the classrooms. I cannot in a month of Sundays get my head around that one. 


I could go on and on about all the problems as there are so many but I won’t. Some of the charter schools in America that some of our academy system is modelled on have apologised for developing the draconian behaviour systems. They now realise that children and young people need a voice. One school issued an apology to all students and parents for the harsh system that tried to make kids comply to. 


I know from my own children and decades of working with young people that children learn what they are modelled. Heaven help us when they leave school and fail to listen to voices less powerful than theirs. We are going to also churn out really angry people who will spit the dummy if people don’t comply with their instructions.  

I’ve always held the belief that you can catch more bees with honey than vinegar. I learnt that at school and it served me well. It’s time we all woke up to what is happening in some of these unaccountable academies and how our children are being given a disservice. Government guidelines say that Multi Academy Trusts should only have a certain amount of schools. That figure is 10 schools per MAT. ULT have 93  Please wise up if you are a parent choosing a school for your children. Check out the culture and ethos. Look at the salary of the chief exec. Ask other people about their experience. Don’t be fooled by the glitz and the polished delivery. 


When we were fighting to stop our secondary school from being swallowed up by ULT, Jon Coles, the Chief Exec decided to try and bring me down a peg or two. He was on £250k, I was on disability benefits. He has friends in The DFE where he worked formally, I have years of experience in pastoral care. Not much of a power imbalance! I’m not frightened by that though. He took it on himself to threaten me in several exchanges between us. He researched my background and the background of two other vocal people in our group. He then sent me a message saying “how would your colleagues be if they knew you worked in an academy?” He then went on about what he had discovered in the background of the other two, sharing with me their personal information. That’s how unprofessional he is. There is enough bullying in schools where children are learning how to manage all those raging hormones and emotions. We don’t need more bullies at the top who turn staff and teachers into bullies which means the school sends out bullies. I really don’t think it’s rocket science. A good education can change anyone but a good teacher can change everything. Let’s get back to that before it’s too late

Saturday 9 July 2022

Ta women’s football








It’s been a fairly busy time for me lately. One day I had 3 zoom/teams meetings. I said to Maggie that was more like a work day. Lol. One of the things I find difficult about zoom and teams is that because your comfy at home it’s more likely that you will show how tired you are. I yawned through a couple of sessions. It wasn’t to do with the content as that was interesting. It’s just due to the fact that it takes a lot of energy to concentrate that hard. I have enjoyed it and it was good to give my brain a workout. On top of that my sister Gail and I planned a surprise garden party for my niece Jessica. 


Jessie has been studying at Greenwich University. Her cohort were really badly affected by the pandemic. Despite all that uncertainty and most lessons being on line she managed to graduate with a 2:1. I’m one proud Auntie. 


As we move forwards (please note I don’t say as we move to a post covid phase) with the pandemic I find myself being disabled by society around me. When people were wearing masks and still practising social distancing I was able to go to quiet and out of the way supermarkets in a safe way. Now I often end up sitting in the car as it’s a bit too risky. 


Sadly I also feel disabled by the NHS. When I go to haematology they are of course brilliant and really on top of infection control measures. All patients are vetted at the door. Visitors of relatives have to wait outside the unit till called by doctor. Everyone wears a mask and social distancing is practiced wherever possible. Sadly for me I’m also seen in many other departments. I have appointments in rheumatology, dermatology, respiratory medicine, ophthalmology, gastroenterology and of course all the scans and X-rays and blood tests that go with it. Now I’m expected to sit next to people who are unmasked. There really need to be safe zones for clinically extremely vulnerable patients. It’s a mess and I feel I’m being left behind. 


On top of all that my car was vandalised. It’s seems they were either trying to steal the car or the catalytic converter. They have no idea of the damage they cause and the impact it has. My car is my lifeline. I cannot go on public transport. I use the car for all my appointments. It’s a Motability car which is the only reason I have such a nice big vehicle. My mobility scooter has to travel with me hence the need for a big boot. Despite the helpful Motability people it’s still a right royal pain. On the day I found it, I ended up being on the phone e or computer all day. Repair garages only have small curtesy cars. Again helpful Motability said they would hire one from me that I could keep my scooter with me. 


On the medical front things are okish. I have read a lot recently about opiates not being good for chronic long term pain. Without consulting anyone I stopped my pain patch. I’d had it since at least 2014. Oh my days, it was like withdrawal. I couldn’t sleep, eat, sit still. I wore a path to the bathroom because I needed it so often. I was determined I wasn’t going to give in. I’m fine now but it was rough for about a month. Of course I’ve now given myself another problem. I’m in a lots of pain. I spoke with the pain consultant. She congratulated me on coming off the patches and said it would have been better to do it more slowly and gradually lower the dose. I’ve learnt that lesson. Lol. She is going to try some different types of patches with lignocaine in it. Lignocaine is a local anaesthetic. I’ll be interested to find out how well it works. 


I had a really fascinating test the other day. I was having nerve and muscle assessments. As you can see if the photo below it was like a torture session. ðŸ˜ƒThe doctor was holding something like a small cattle prod. When she places it in the right place, it vibrated at that spot but would make my foot twitch. Weird. After testing many nerves in this way, she then went on to place these long fine needles in different muscles including feet, calf, shin, thigh front and back, hand and finally neck. Each time she moved the probe to a new place she would make me flex and relax my muscles. I could hear the energy used in the form of white noise on the screen. It was really interesting. I shall look forward to hearing the results. 


Another great distraction for me just now is womens football. The #Weuro22 #lionesses. For those that don’t know me I love me footie. I played 40 years ago. It’s great to see these amazing teams getting such airtime. It’s about time too. 


We are living through interesting times. Politics and governments are in a mess. Health care is under enormous strain. The cost of living is hitting people and yet people still do acts of kindness everyday and live lives that make a difference. It can be easy to forget that when surrounded by so much crap. This week alone I’ve had an unexpected present, an offer of £1000 from a lovely friend after hearing about my car. I’ve had offers of lifts to get me the hospital if needed and my caring neighbours all tried to help find the culprits. One of my young neighbours was woken by a noise and he looked out of the window. He saw the two people at my car and shouted at them and they ran away. There are so many good and honourable people out there. Don’t give to much energy to all the negativity. For me, integrity is doing the right thing when no one is looking. Why not this week be kind to someone? You might be the only person who is, so that kindness will make a huge difference. 


Take care people and stay safe. 



Saturday 28 May 2022

World Blood Cancer Day 2022

















As today is World Blood Cancer Day I thought I should do a post about the continuing trials and tribulations of a life differently lived due to blood cancer and the effects of treatment. 


Many of you know but for new readers this story started when I was diagnosed with MDS (Myelo Dysplastic Syndrome) a rare blood cancer when I was in my early 30’s. I’d had weird blood tests back as far as my early 20’s so there had been a problem for a very long time. It took a while to diagnose me because statistically I was not in the demographic. Most people with MDS are diagnosed when they are older and it effects more men than women. Trust me to be different! 


I lived with the condition secretly for many years. My poor old long suffering partner knew but I even kept some facts away from her in the beginning in my bid to not worry people. I used to say when people asked why I looked so pale that I had a funny blood disorder and left it at that. 


As the years went by I was hit by more and more bouts of sepsis. Sepsis is a very serious condition with a 40% mortality rate. The reason I kept getting it was because my blood wasn’t producing enough white cells. This makes you prone to infection. MDS also affected my red cells and platelets. Some MDS is confined to one aspect of blood but mine was what they call multi lineage. That means I would bruise easily at times and also become seriously anaemic and need blood transfusions. Each time I got sepsis, I would fight my way back and after recovering I would get back to full time work. The dips and hospital admissions were getting more frequent and I was beginning to struggle. For my 50th birthday I wanted to go on holiday with my extended family. 13 of us went to Majorca for a couple of weeks of chillin’ in the sun. We had a super time including a brilliant day out in a speed boat. The day before we were due to fly back, I was taken seriously ill. I’d been sick in the night and I had a temperature in the morning and was a bit confused. My partner marched me straight down to the doctors. Thank heavens she did. The doctor didn’t speak English. I don’t speak Spanish. He took my temperature which was really high. Then he took my blood pressure, pulse and oxygen levels. All were in my boots. He looked at me, then looked at his readings and he banged the machine and did it again. Same thing happened. He was in disbelief that I was still upright. The next thing I knew I was put on a bed and I was surrounded by medics and had needles put in my neck and my clothes cut off. I had developed sepsis again but this time it had developed into septic shock and that has a 60% mortality rate. I was placed in ICU and my poor family were told I was going into organ failure and I may not survive. 


I can’t image how hard it was for my daughter and sisters and extended family to fly home not knowing if they would see me again. Our travel insurance enabled my partner to stay on with me. The Spanish system was excellent and they certainly saved my life. I got out of hospital after 11 days and then had the best part of another week before I was well enough to fly. 


It seems I have more lives than a cat but my medical team were worried that one day I wouldn’t bounce back. They prepared me for a bone marrow transplant which happened in October 2016. They started to search the bone marrow registers but no one was a good match for me. They said they would test my younger sister as she was the only full sibling I had. They warned us both that there was only a 25% chance of a match with any sibling. Fortunately, Gail was that match! 


The transplant was a gruelling process but I embraced it warts and all as I hoped it would put me into remission and give me longer on this earth. It has certainly done that because 5 years later I’m still breathing. 


Sadly though I live with the consequences of such harsh chemotherapy. I also have muscle myopathy (weak muscles) probably from all the steroids I’ve had to take. I have still got a wonky immune system that is not strong at all. I am treated with IVIG to give me some antibodies but I can easily pick up infections. If I do get an infection it seems to have a dramatic effect on my weak bone marrow and it goes into free fall and all my counts bottom out. My fantastic medical team at Kings keep a good eye on me and if they spot that process happening they admit me and fill me up with strong antibiotics. As I am fragile in that way covid has been a nightmare. I’m still having to shield. I haven’t hugged my daughter, grandkids, sisters, brother, extended family and friends since this horror started. I’m very tactile and I miss that contact. However I am blessed to have a garden that I make really good use of during the warmer months and entertain people. 


Some of the side effects of all that treatment have been serious damage to my hearing, lung damage which leaves me breathless on exertion, muscle wasting, skin itching, cataracts, dry mouth and eyes, gut and absorption problems, gastroparesis and reflux and dental issues. I had a condition called SVCO which has left a few issues and I had a small stroke last year. I have also developed osteoporosis. 


Despite all that I count myself lucky. I’ve seen my daughter grow into a beautiful young woman and a fantastic mother. I’ve seen my 4 grandchildren born and grow. I’ve proudly watch my niece finish her degree and start to make her way in the world. I’ve celebrated more than 30 years of love with my amazing soul mate and partner. I’ve presided over my sister and mothers funerals as well as many other family members and friends. I’ve welcome new life to the world and given thanks in baptism for them and I’ve married people and celebrated love. 


If you are newly diagnosed, do not despair. I was diagnosed in 2000 and I’m still going. 


One of the things that ill health has taught me is to live deep within my soul. I don’t sweat the small stuff or the big stuff. I know I’m blessed to live in the time I do where all these treatments are available to me. I’m blessed to have such a supportive family and friends. I’ve also got to know many virtual friends all over the world that I wouldn’t have known otherwise. 


Living with blood cancer is not easy  but it doesn’t have to be the end , it just means letting go of the life you thought you’d have to then live the life you do. It’s ok to struggle. These things are not easy but the struggling helps you to be the best version of you that you can be. 


On this World Blood Cancer Day I wish you every blessing for all your experiencing and going through. Just hang on in there, some of the best days of your life hasn’t happened yet.