Mini Rebel

I’ve had a really interesting week. To start with I was asked to talk to a 6th form RE class. As part of their A levels they have to engage in the differences within the Christian faith and why people believe certain things and some groups have different beliefs. The person they had before to talk from an insiders point of view was a rather staid cleric. A friend of mine works at this school and was chatting with the RE teacher about the problem and suggested he approached me to chat to the students. 

Having worked in secondary schools for 8 years before leaving due to my bone marrow transplant, I am well used to teenagers. Also I have 3 teenage grandsons and a granddaughter who is 10 going on 28. Lol. More about her later. I’m known as Rebel Rev. Someone said to me once that I was the most unholy holy person they had ever met. I took that as a compliment. As such there is nothing I like more than stretching young people out of their black and white world and into the grey. We talked about sexuality and same sex marriage. I could hear a few sniggers when I said “if you are against gay marriage then don’t have a gay marriage,” They were astounded that I can bless a tank but not the union of a loving and committed same sex couple. We also talked about termination of pregnancy. There were also questions about why there are two creation accounts in Genesis and why do people believe different things. I really enjoyed responding to these questions and opening up their minds to celebrating differences and living with questions rather than having to have all the answers. It was just a shame that because I was doing this via zoom I couldn’t hear all the students remarks so well. Hearing aids don’t always help with modern day communications. 

One of the things I love about being a mother and grandmother is watching the grandkids create Khama with their parents. My daughter wasn’t much trouble growing up apart from wanting to do all the girly things. She once wet her knickers so she could have a frilly pair like her friend who’s house she was playing in. Lol. By the time she was 11 I was giving her the child benefit so that she could choose her own clothes. She was so particular and wouldn’t accept my advice so I let her take a lead on it. She learned the hard way about buying kitch and making her money last. I love seeing the payback now with her kids. The boys are particular about their appearance but this is nothing compared to Molly. She is head strong and confident. She’s been at home because of an outbreak of COVID in her school. One of her brothers was at home too. Molly loves you tube and taught herself gymnastics and make up all from checking various you tubers. Then she decided to save her mum some money and cut her long hair. She recorded herself doing it as she followed the steps on YouTube. The attached video is the outcome. I just love it. I had a chat to her today and said she was like me. She knows that my parents weren’t the best mum and dad. I told her my philosophy was if I’m gonna get in trouble any way I might as well get in trouble for something that I’d done. Also I introduced her to the concept of asking for forgiveness rather than permission. It’s so wonderful being a grandma and being able to implant these subversive ideas. I’m attaching Molly’s video of her cutting her hair with her permission. I hope you enjoy it as much as I did. 

I’ve lived with cancer and it’s fall out for all of my grandchildren’s lives. I was fitter when they were small and I did teach the boys to swim and dive and started their football skills off. It’s been harder with Molly because my health has been worse but we do have a fantastic relationship. When she was little she followed me everywhere. I had to let her have a walking stick because otherwise she was always nicking mine. When I got my mobility scooter she was often on my lap as we whizzed around places. She is slight in frame and stature but mighty in spirit and it’s great to see her blossom. As she wants to be a Youtuber I agreed to put her video on my channel. The world better watch out for this one. I think in time she may take it by storm. 

As for me, I’m still breathing but I’ve come to realise that I’m never going to be totally illness free. I’m not going to get my life back the way it was but I can still have a different sort of life. I have problems with my bones, muscles and nerves. I have a bit of nerve impingement in my neck. I’m still getting numbness and pins and needles in all my limbs. My right arm doesn’t alway feel it belongs to me and at times I lose my grip on things because I can’t feel them in my hand. It’s likely I have peripheral neuropathy from all the chemo. I still need a neurologist to check this out and I’ve still not been seen in the TIA clinic (mini stroke). My blood counts are pretty good just now. I’ve had a horrible and painful abscess on the back of my leg that was successfully treated with antibiotics. That shows that I can fight infections if I catch it early enough. I’m still trying to get down to 5mgs of prednisalone. As a result I’m in more pain and have more stiffness. I really really need a massage but that’s not going to happen during the pandemic. 

The hardest thing for me continues to be the never ending shielding due to my ineffective immune system. Last week my grandson and I were chatting in the garden about a problem he was having. He got upset and I hated the fact that I couldn’t hug him. That hurts me more than anything. I can’t even say oh blow the guidelines and hug him anyway. Many of you will wonder why. It’s quite simple really. If I were to pick anything up and one of the family had hugged me, they would never forgive themselves. As a result they are all anxious around me. I have to deal with their fears in a respectful way. That’s why I don’t hug them. I’ve also told them that if and when I do die, I will shake my chains at any of them who feel responsible. It’s my immune system that the culprit, nothing else! 

I went into a shop the other day and there was not much social distancing going on. Also half the people weren’t wearing masks. I had to leave. I’ve managed some how to keep myself alive for 21 years of living with cancer and it’s treatment. Now my very survival depends on people doing the right thing and seeing me and my needs due to extra vulnerabilities. I want to be around long enough to see my beautiful grandchildren become the amazing adults they will be. I want to love my daughter through the changes that come as 4 kids grow up and leave home. I want to give my partner of 30 years as much time as I can. Please help me and continue to keep your distance as well as wear a mask in shops. 

https://youtube.com/watch?v=laKPRl1nMpU&feature=share

Black Alert

 I have so many thoughts and feelings running through my head ranging from excitement to frustration and dejectedness. So why such mixed emotions? 

Well the excitement is about tonight’s semi final in the European cup. #euro2020  England are playing Denmark in case you didn’t know. Even that provokes a mixed response. I love my football and have watched nearly every match of the tournament. When Christian Erikssen collapsed on the pitch in Denmarks opening game and needed CPR, you I couldn’t help but feel emotional. In real time to be watching a fit young man fight for his life was incredibly sobering. It makes you think that if it can change for him in the blink of an eye, how much more is that possible for those of us who live with cancer and the effects of treatment. What’s lovely is that a wave of goodwill and positiveness had enveloped the Danish team. Many people wouldn’t mind if they won, except that challenging problem that in order to win they’d have to knock England out. For me I guess it’s a win win situation. On balance I hope England win tonight because I feel they stand a really good chance of winning the whole tournament. 

So that’s my explanation for feeling excited. Moving on to the frustration aspect of my current mood. Yesterday I was due for surgery to remove my PEG. On top of this I was also going to have a microchip clip placed on my oesophagus to monitor my stomach acid. The final unpleasant bit of the surgery was a colonoscopy and polyps removal. I was due to have this done a year ago. I did all the bowel prep and got to the point of being wheeled in for the procedure when the anaesthetist decided I was too high risk and needed more experienced people around me. You can imagine after drinking all that awful tasting liquid and feeling like my insides had been emptied, I was not best pleased. 

The pandemic then put pay to me getting the procedure done again until I was given the date for this week. In order to make sure nothing went wrong, this time I met with 2 anaesthetists for an assessment. They decided that because I’m high risk that I needed a bed and it couldn’t be done as a day case. 

In preparation for all these various bits I had to stop taking my blood thinning medicine for a week. I’m on these for life now because of having the mini stroke. I also had to stop taking the medicine that controls my stomach acid and some painkillers for my guts. That meant I felt a bit rough for the week as of course the symptoms that these drugs treat came back. 

The worse bit was yet to come in the form of the yucky bowel prep. I had to stop eating at 1pm the day before and been on a restricted diet for the week before.  At 6pm the evening before I had to drink a litre of this foul tasting mixture. It took me a couple of hours to get it all down and was up and down like a yo-yo until the early hours. Then I had to be up and drink another litre of the stuff at 6am. I’m not the best first thing as it is with things that taste nice yet alone this! 

I eventually stopped running to the loo and then gingerly made my way to Kings for the procedure now not being able to eat or drink at all. I suffer from a really dry mouth so not being able to drink is unpleasant. My tongue sticks to the roof of my mouth and my lips stick to my teeth. I had to keep swilling my mouth and spitting out the water. 

I got to the endoscopy department. The staff were lovely. A 2nd year student nurse filled in the paperwork under the supervision of a friendly staff nurse. They had just finished taking my obs when the ward manager came. He told me the hospital was on Black Alert and it was unlikely that they would find me a bed. I was utterly dismayed. This was the 2nd time I’d been through all that horrible preparation for no reason. The nurse explained that they had a surge of covid admissions and even though there were over a 1000 beds in the Trust they had none spare. He said it’s madness that the government have opened up too quickly and it will likely get worse. Shortly after this a consultant anaesthetist came and spoke to me. He said he’d love to do it but couldn’t magic up a bed. He was apologetic and understood my frustration. It was nice of him to say but I don’t think they do totally understand how frustrating it is to have to go through this. What made it worse was when he told me that he had seen an email about being on black alert the night before. 

If they knew the night before why didn’t someone start cancelling patients then? Even if they couldn’t spare me the prep the night before maybe they could’ve told me that morning so that I didn’t have to fast and drag myself over an hours travelling time to the hospital.  Just think about the whole picture. Not taking my blood thinning medicine must slightly increase my risk of having another TIA. The lack of stomach medicines means the excess acid may have caused more damage. Finally the extra medicines adds to the strain on my liver and kidneys. Also it’s important to mention that psychologically these things have an impact hence me feeling a bit dejected. 

Those of us with no working immune system are eternally grateful to all those who help keep us safe. People who wear their masks properly, use hand sanitizer, keep their distance are all great and help to keep me safe. Those who don’t wear PPE, don’t have the vaccination and mix in large groups have a huge negative impact on me even though they don’t know me. I’ve kept myself as safe as I can for 21 years of living with cancer. Now I have to hand my safely and vulnerability over to you and hope you do the right thing. It’s scary. Those that end up in hospital and force one of the biggest London Trusts to be on black alert are also adversely affecting me. I am not getting important procedures done in a timely fashion. This could prove to be detrimental. Are your freedoms worth more than my life? 

Despite all this I know that Kings does its best and the dedicated and hard working professionals in the NHS will ride yet another wave backed up and hindered by an incompetent government. In order for my day not to be completely wasted I went round to haematology to show them a very painful “carbuncle” as my nan would say on the back of my leg. I’ve got an abscess. Victoria, my dedicated consultant, prescribed some antibiotics in consultation with microbiology. She wants a report back on Friday to make sure it’s getting better or to contact them sooner if it’s getting worse. It looks like Mount Vesuvius to me and I hope it doesn’t erupt. Lol. As with all strong antibiotics they are making me feel a bit queasy but it’s only a week. I shall grit my teeth and hope it does the job. 

Sometimes it’s hard to keep plodding on with all these things but what other choice is there? 

One of the other sagas I had this week was a family of magpies came down the chimney and were trapped in my front room while I was away from it for a few days. I have never seen so much poop. Curtains, carpets, tv, sofa, lampshade all covered. It seems one came in, I suspect accidentally as it was young, and then being for family orientated the mum and dad followed to try and rescue. Sadly they all died. 

I know there are good people in the NHS rescuing me. I couldn’t speak more highly about the fantastic job they have done to keep me alive. I just hope that a more thought out process by the government supports them, or else we all end up like the magpies and perishing because of poor decisions. 

Wherever you are reading this, please remember us forgotten shielders. Don’t leave us too far behind when you get to “freedom day” Please continue to do your part to keep me and people like me safe.