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

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. 😃The 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. 

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. 

Garden Blessings

 

Sometimes I just don’t know where to start. I’m in the midst of one of those times where I just have to keep breathing. 

Today is a big Kings Hospital day. I left home shortly after 8am. I was due to have IVIG at 9.30, then a skin biopsy at 12, then haematology clinic at 1.30 and finally rheumatology at 3.20pm. It will be a minor miracle if all that happens without any hiccups. 

Tomorrow I’m back at Kings to be admitted for a small op to tighten up the muscle between my oesophagus and stomach. What a life eh? 

I’ve been feeling really tired for the last few days. Let’s hope the good sleep with the general anaesthetic perks me up. I can live in hope. Lol. 

One of the good things thats been going on recently is being able to get back out in the garden. It’s been so nice to hang out with family, friends and neighbours and share some good wine and food as well as great conversations. My poor mate Alison came from Cumbria for a visit. Sadly it was bloody freezing that day. We wrapped ourselves up in blankets and enjoyed the conversation. I hope we have a warm and dry summer so that we don’t have to freeze when catching up with people. 

One of the really good things that’s happening for me just now is I’m almost there in getting my bike back on the road again. I haven’t ridden “Theo” for just over 7 years. Being a motorcyclist is part of my DNA. I’ve had bikes since I was 17. It gives me such a sense of freedom. I feel like I’m at one with the bike as I glide through the air. Many of you know I suffer with terrible nausea and vomiting. When I’m on the bike that goes away as I feel the air whistling around me. It’s so refreshing and invigorating. I’m very happy about that but I know my poor long suffering partner isn’t that impressed. What I always say to people is that it’s really important to live until you die. Being wrapped up in cotton wool is like a slow death to someone with an adventurous spirit. Watch this space as I get back on two wheels and have a new set of adventures to blog about. 

Last week I found out that a lovely man who had been very important to me as a teenager died. David was the priest when I showed up as a street urchin come new chorister. The choir trainer at the time was called Gerald Gostling. He used to keep me behind after choir practice to sort out my diphthongs. Lol. For those who don’t know what they are it’s the point in the word where the vowel sound changes. If you have a South London accent like me you change the diphthong early. When singing it’s important to change it late. He also made me practice my vowels so I wouldn’t stick out. I remember all that so fondly. I still have my London accent but you won’t hear it when I sing. 

Any way getting back to David. He was a fairly traditional priest. He had a big pastoral heart and helped a lot of people. I was encouraged to speak to him about my unhappy home life. I felt he listened and understood me. Even when I ran away several times and he was left with the task of taking me home, he never berated me. He made me feel that I had some genuine grievances and he didn’t judge me. He was the first person to stand up to my dad for me and I loved him for it. When he hugged me I felt safe and loved. 

Despite all that love and good church based influence, I was still a mischievous imp. David and his wife Mary had 3 children Peter and Stephen who were twins and Carol. When we were younger teenagers we were all really close. At 17 Peter and Stephen went in separate directions. Peter Became a Verger at Norwich Cathedral and Stephen joined the army. There was one occasion when David was away on retreat. Stephen and I “borrowed” his car and drove to Norwich to see Peter. I did some of the driving despite not having a license. It was great fun and we never got caught. Funnily enough I think the car was a green hill man imp. Lol. Those were the days eh. 

Sadly Stephen died in an accident about 10 years ago. My heart goes out to Peter, Debbie and Carol and their families as well as Honor at this sad time over the loss of David. 

It’s taken me a couple of days to write this as I’ve been so busy with hospital appointments. On top of what I mentioned above over the last 2 days as well as seeing the 4 consultants in their different specialisms, I’ve also had a skin biopsy which left me with 2 stitches, a photo session with a medical photographer and an X-ray of my neck. The next day I had the ARMS procedure (anti reflux mucosectomy)  under general anaesthetic. The anaesthetist was lovely and had read up about me waking up under anaesthetic before. She said I would be fine and she would look after me. I warned her I had problem veins and it took 3 attempts to cannulate me the day before. She said she was confident and was only using a small one. I didn’t like to say they even have trouble trying with paediatric ones with me. The first try didn’t work then bled everywhere when she took it out. Typical. She got in on the second go though. She gave me a strong painkiller and said I should begin to feel woozy. It was nice. For the first time in ages my neck didn’t hurt. Then she slowly put in the anaesthetic. She was talking to me and said to go to my happy place. I told her I felt drunk. She said that’s nice, I said yes and very unusual, then I don’t remember any more. It was lovely. 

When I woke up I had a bit of a sore throat and a slight chesty cough that hurt  my chest when I coughed. My stomach felt like it had been messed with but it wasn’t too sore. They had booked me a bed for the night as I’m a complicated patient but I’m also very tolerant of all these medical interventions and I cope well. I asked if I could go home and they were happy to let me. I just need  to stick to a soft diet for a few days. 

Since I’ve been home I’ve taken it a bit easy as my tummy feels a little delicate. I went to vote on my mobility scooter and went to the wrong polling station. It’s all changed with the new ward boundaries. Never mind. Serves me right for not reading my info properly. 

Today I had a lovely time in the garden. First I had a leisurely lunch with my daughter. I’m so proud of her and the mother she has become. I miss hugging her enoumouswith 3 of my neighbours. Over a few glasses of wine (them no me) Lol we put the world to rights. It was a lovely sharing of the lives of 5 women. All of us come from differing backgrounds but shared the common human experiences of life. We drank from the well of lives deeply lived and experiences had. It’s such a shame that people don’t gather regularly to just chat. We all learnt from each other and I’m sure we each took things away from the richness of the conversations. 

One of the good things about the pandemic is that it has built community in places. In the last weeks I’ve had lemon drizzle cake from two different neighbours as well as rock cakes and rhubarb crumble. When my partner makes nice bread or rice pudding we share that with people. All these little things add up and really help in getting through this tough time of continued shielding. Of course I long for the day when I can be free again but I also count my blessings to have so many great family, friends, neighbours and NHS staff in my corner. 

Wherever you are in the world reading this blog I hope you also have some good people in your corner too. If not go and find some. I promise they do exist and the more light you let into your life the brighter your world will become. 

International Women’s Day

Today is #internationalwomensday so I thought it was a good day to post. It’s also been a year since I had what up till last week was described as a TIA or trans ischaemic attack (mini stroke). I remember the day so vividly. We had a couple of workmen in who were installing a new boiler. I had a mask on as did everyone else in order to protect my immunity. My partner came in the room and asked me something. I tried to answer her and was looking straight at her but no words came out. She turned on her heels and went off thinking that I was distracted or something. Then I started getting this tingling feeling in my arm and leg. I say down and pulled my masks down as I knew something was wrong. My partner came back and spoke to me again. I was trying to write her a note on my mobile but I couldn’t work out how to even open it yet alone write a message. It was weird. She said you can’t talk can you? I was able to shake my head. She said “we’re going straight to the hospital” And we just put our coats on and left. The workman were left wondering what on earth was happening. 

Now we wind on a year. This week I finally had my appointment with gastroenterology. This was the first one since October when they took the PEG out and did various biopsies. The lovely consultant was apologetic about all the mistakes that had happened previously. He explained that the muscle in the top of my stomach was too lax and needs tightening. He said that can be done endoscopically and after 3 months they would check again if it’s worked ok. Then he said the muscle in the bottom of my stomach was stiff and not always letting food through. This is a slightly more complicated procedure but still should only involve an over night stay. The biopsies were all fine. 

It was good to have this info and to know there was a plan to hopefully improve things. 

I was feeling rough that day as originally I had been told my appointment was at 12pm. I then got a text telling me it was at 10am instead. I find getting up early and taking all those horrible tablets really quite challenging. It leaves me feeling very delicate. When I was phoned and asked if I could attend an MRI on the same day I said yes as it’s always good to have two appointments on the same day as it cuts down on the travelling. The scan was booked in for 2pm. 

So after I finished with the gastro appointment at 10 instead of just sitting around and waiting till 2pm, I went and knocked on the door of the MRI suite and asked if they could see me earlier. They were lovely and fitted me in straight away. 

I was home by 12.30pm so it all turned out ok in the end. Sadly though I still felt pretty grim. The effects of getting up so early were still hanging over me.   

On that day I also had a phone call appointment with the stroke/Tia doctor. He was checking if I had any lasting effects from what occurred a year ago. I said that sometimes I forget what I’m saying and I still reach to find words at times. This is unusual for me who is so used to expressing myself and writing things. I also said I still get numbness and tingling in my arms and legs but that could be nerve compression.  I explained that I’d had an MRI that morning and was he able to see the results. He asked me to wait why he looked into the computer. He then told me the MRI was available but hadn’t been reported on yet. Then came the bit that I really didn’t see coming. He told me the MRI showed that in fact I’d had a small stroke last year not a TIA as first thought. I was a bit gobsmacked. He said the treatment was still the same and he was happy to discharge me from that clinic. I was happy to be discharged but did feel a bit overwhelmed by the news. My life continues to be unpredictable and challenging. 

Later that day after unsuccessfully trying to war some supper I ended up doing some of my huge vomits. This went on for 24hrs and left me feeling completely washed out. I gradually started eating and drinking again. Then blow me down if it didn’t happen again yesterday. I’ve not eaten and I’m feeling quite weak and wobbly. 

I know there are several thing against me that contribute to the nausea and vomiting. Alongside the weak muscles and gastroparesis there is also all the medications I take as well as bits of GVHD. Sometimes I would just like a simple life. I long not to feel nauseous and to be able to enjoy food. It just doesn’t happen. 

I sent an email to my haematology consultant. I said I wondered if the antifungal and antibiotics I was currently on for my chest infection. They are stronger than the normal stuff so that’s what makes you feel ropey. She has suggested I stop taking one lot and see if things improve if not reintroduce them and stop the other one. This is alongside me already increasing my anti sickness drugs. 

I often say to people I don’t mind being this sick but I really hate feeling unwell. What I mean by that is I know I am limited in what I can do. I can’t breathe very well. I can’t walk without pain. I have no energy etc but the throwing up and constant nausea is awful. That’s the bit that gets me. 

As well as all these challenging things there have been some lovely events going on. My beautiful granddaughter was finally brave enough to do a backwards flip. I’ve been encouraging her and she sent me a video of her doing it. I was so proud of her and loved to see the delight in her eyes. I had a lovely “walk” in the park with some of my sisters and brother. I caught up with my lovely cousins and celebrated their amazing daughters 18th birthday. It’s always important I think to try and see the light as well as walk unafraid in the darkness. 

In my life I have met many amazing women. They have all helped me in different ways to be the strong woman I am today. Among the women that influenced me life are:

My nana

Cagney and Lacey 

Mrs Wilson my French teacher

Ros

Wendy

Commander Kira

Frances

Captain Janeway

Marlene 

Charlie’s Angels

Mo Molem

Greta Thunberg

Maya Angelou

Germaine Greer

Uhura

Jane Hobday who taught me about prejudice

Diana

Demi Moore

Mala Yousef

Suffragettes 

Mary Magdalene

Princess Leah

Then of course I have the wonderful women in my family:

Maggie 

Annie

Molly

Gail 

Jess

Dawn 

Karen

Helen

Sandra 

Sarah

Charms

Abbie 

Sallie

Linda

Caity

Gill

Hannah

Anne-Marie

Mya

And supporting the women some fairly good blokes

Jeff

Will 

Russell

Terry 

John

Nick

Josh

I also can’t let this moment go without paying tribute to the amazing women medics who have kept me going over the years:

Sophie

Geke

Janet

Ashleigh 

Leonie

Kavita

Katie

Victoria

Carmel

Shu

Pramila 

Anna

Ciane

On this special #IWD22 let’s give thanks for all the women who have and who do make us the women we are. Thank you for your love, encouragement and support. I shall finish with some strong womens quotes:

“I raise up my voice – not so I can shout but so that those without a voice can be heard… We cannot succeed when half of us are held back” Malala

“Well-behaved women rarely make history” – Eleanor Roosevelt

“Feminism isn't about making women strong. Women are already strong. It's about changing the way the world perceives that strength.”

G.D. ANDERSON