Cancer, the King and me

 

As cancer is so much in the news at present after King Charles shared his diagnosis, I thought I would share my story and give voice to the impact that cancer can have not only on the sufferer but also on all those that love and care for that person. 

My rare blood cancer, Myelo Dysplastic Syndrome was officially diagnosed and confirmed in 2000. That’s not where the story started though. I had my first strange blood tests in the 80’s when I was in my early 20s. My GP discovered I had very large red cells and was a bit anaemic. She asked me if I was drinking too much and gave me some iron and left it at that. This continued to come up as an issue every now and again for the next few years. 

One day my GP phoned me at work and asked me if I was lactating. I started to laugh and asked her had she rung the right patient? She said that my prolactin was sky high. She repeated the test a couple of times and got the same high reading. Also my cortisol was high too. On top of this some of my thyroid tests were a bit off as was my calcium but not all of them were off. She eventually referred me to a specialist. I was given a brain scan as they thought I might have a pituitary tumour. This was negative. I was prodded and poked many times and by a variety of specialists. Lots of things were just slightly off but nothing conclusive was discovered. 

After a couple of years I was sent to a local haematologist as the one consistent finding was the large red cells and the low grade anaemia. They did some tests and said that it could possibly be MDS. So my diagnosis became ?MDS. Eventually in 2000 I was sent to Kings who did a bone marrow biopsy. This was when I got to meet the amazing Professor Mufti. He told me it was definitely MDS and put me on what was called “watch and wait” It’s a horrible term because it’s like you are waiting for something to happen. It’s like the sword of Damocles hanging over your head and it can fall at any time. Active monitoring is a much more positive way of putting it and the term used now. 

As the years rolled by the appointments got closer together as my illness progressed. I’ve had sepsis numerous times. On one occasion this went to septic shock and I ended up in ICU. My poor family were told my organs were failing and I may die. As well as all this I’ve also had serious line infections from having a hickman line inserted into my chest which would sit just above my heart. I’ve had NG and NJ tubes and eventually a PEG J inserted in my tummy due to long periods of not being able to eat. I had this for a couple of years. 

When all this started I was a young fit football player. I never walked any where, instead I used to run. I rode a big motorbike. I worked full time, sang in a choir, volunteered with St John Ambulance, was a Venture Scout Leader as well as playing and training hard with my football. I played for Millwall Lionesses and went on to play for Charlton Ladies. 

I had a stem cell transplant in Oct 2016. My amazing younger sister was my donor. We had a tough childhood and I did my best to protect her. She felt this was a way of paying me back and was really keen on helping. That was because there wasn’t a good match for me on the system. Siblings are only ever a 1 in 4 match so we waited with bated breath. Gail rang me in floods of tears one day and I thought something awful had happened. Then she managed to get it out that she was a match. We were all jumping for joy that day. 

My life has been saved many times by the amazing team of haematologists and allied health care professionals at Kings but there is a cost. My quality of life is much less than what it was. I now walk very short distances with a stick or use a mobility scooter. I have serious hearing loss and wear bilateral hearing aids. This is due to damage from the high dose chemo and antibiotics. I have myopathy which is muscle weakness from all the steroids I’ve needed. My lung function is not what it used to be and I get breathless very easily on exertion or when singing. My skin feels like it constantly has ants crawling all over it. I have awful reflux and wake up choking in the night. I can’t lie down at night because of this and that has an impact in my neck and shoulders. I get ulcers and lesions in my mouth and several of my teeth have cracked and snapped off. My muscles and joints throb, burn and ache. I haven’t been able to work since my transplant and this has been a big blow. The list feels endless and there’s often a new issue to add. 

Despite all of that, I’m glad I’m still here. I’ve seen my daughter grow up into a wonderful woman and capable mother. I’ve loved and nurtured my 4 beautiful grandchildren and miss hugging them terribly due to ongoing shielding. Amazingly I’m still here and in love with my long suffering partner. When someone in the family has cancer the whole family has cancer. 

Cancer takes a lot but it also gives a lot. It has taught me to live deep within my soul. Its opened up honest conversations in my heart. It’s taught me what’s important in life and not to sweat the small stuff. It’s made me even more resilient than my unusual childhood had already made me. It’s introduced me to some fantastic people among the patients, doctors, scientists, advocates, allied professionals, admin teams, cleaners, patients support groups personnel and charity workers. 

I’ve also met two amazing sisters and a brother and their wonderful families who I had never met before. We share the same dad.  My cancer diagnosis spurred me on to keep looking for them. I’m so glad I did.  

I am also blessed to live in a country with a first rate health service.  I have the most supportive and loving family around me. Not everyone is so fortunate. I also have some very clever and creative consultants and medics who I trust and who always have my best interests at heart even in these strange covid times we are living through. 

My job is to keep on top of it all and not curse the darkness but just keep lighting candles. 

My brilliant medical team continue to touch me with their commitment and faith in me. I’m also willing to give anything a go that may help. Advances are being made all the time. What I have to do is when I get to the end of my rope, I need to tie a knot in it and hang. So far, whatever obstacle,  I’ve always bounced back. I have to choose to live in hope. 

To all of you at different stages of your own story including The King, I write this to encourage you. Sometimes the only thing you can do is grit your teeth and breathe through it. There will be days though when the smile of a grandchild lifts your day or a cuppa with a friend eases the burdens or a hug from the partner reminds you there’s more to you than cancer. I try not to be defined solely by my illness. There is so much more to me than cancer and hospitals and medication. 

I’m a partner, mother, grandmother, auntie, sister, cousin, niece, priest, friend and neighbour. Cancer can’t rob me of that and I choose to keep moving forward and step out in the hope and light of each new day. 

Filling the Gap 2

Hello Everyone,

This blog starts where the last blog left off. For those who haven’t read it a very brief synopsis is that I went into hospital for a routine day case surgery. I was kept in overnight as I had virtually passed out and I as in quite serious pain. 

My long suffering partner Maggie said good night to me around 8.30pm and that was the last thing I remember for nearly two weeks. 

When I came to, my perception of reality had changed. I had been kidnapped and taken away from all who knew and loved me. I was being held captive and

being tortured by the Russians. This torture took various forms including: being branded with a hot iron, having a snarling slavering dog bark in my face. It was barely contained on a lead. I also experienced my stepson and great nephew tell me that I killed a child when I was a child and that my gender was changed to protect my identity. I was born a boy and transitioned to a girl. My two brother-in-laws were stabbed but we’re not allowed in. There was bombs and flashes going on outside and sounds of rioting. I was told I was in Kings but I knew it was the Russians because it didn’t look like Kings. Two of the worst tortures involved being rotated in my bed into a pool of water under me and just when I thought I’d burst from lack of oxygen, I’d be brought back up, gasping for breath. The other was being sexually abused in front of an audience. One nice thing that happened was a neighbour and friend of mine had been negotiating for me and looking for me. He and a delegation found me and came to see me. With him was my niece who lives in Canada and is a physio and Sam Kerr who until recently played for Chelsea women’s team and was the Captain of the Australian national team. They promised they would get me out of there and were working hard on my release. These experiences went round and round ALL THE TIME. Sometimes there would be a new experience. I was often driving the car but couldn’t reach the break pedal and was driving round country lanes and scrapping through tiny gaps or crashing into the hedgerow. I was being terrorised 24/7. I started punching or kicking anyone who came near me. I was utterly terrified. I became aware that I had a tube in my mouth  I wanted to pull it out but my hands were totally wrapped up  

One day when the torture had been absolutely intense, I noticed my hands were free and I pulled the tube out of my mouth. My nose and throat really hurt as a result. I was really struggling to get up but I couldn’t move  I remember Maggie holding my hand and making me look at her  she said to me “Kes, do you remember, you came into hospital for an operation? One of the clips came away and you got sepsis. You’ve been in intensive care and on life support for two weeks!” With that, my delirium was broken and I started slowly piecing together what had happened to me. I listened with horror as my loving partner and sister and daughter explained what had been happening to me. They also said I’d been punching all the nurses and doctors. My beautiful daughter explained that I punched her so hard, she stumbled back into her partner  when I was more with it, she said to me “You never did that to me as a child, it was a bit of a shock” it was a shock to me too  I’m a pacifist and wear a white poppy but there I was, when I felt attacked, defending myself and lashing out  I reverted to my early years and my street itching days.

Once I was awake properly, I didn’t sleep for two days. I think this was multifaceted. I don’t want to go back to that world of terror and I was also in a highly anxious state. This was a new experience for me. Maggie would hold my hand or rub my leg and my sister would run my head in a bid to get me to sleep  it was to no avail initially.

Then the doctor came and talked to me. He said I had to be put back to sleep and in the ventilator again as I was deteriorating. He said they needed to drain my lungs because they were filling up with fluid. I also had a collection of pus in my stomach that needed draining too  I didn’t want to go back on the ventilator but he explained I really needed it. I asked him would this kill me if I didn’t and he said yes  I was terrified but I’m not stupid. He promised he get me off the ventilator as soon as possible. He was a good doctor and didn’t mince his words. I like that  He was of Spanish origin. The NHS was definitely better for having him in it.

He was true to his word and woke me up two days later on Christmas Day. Later in the day he asked me if I wanted an ice cream. This fantastic doctor went and got me some whippy ice cream in a carton and came back and fed me some. It was the best Christmas present ever! 

From then the slow and long road to recovery began. I’ll tell you more about that in the next blog post. I’d like to finish this one by saying a huge thank you to all the nurses, doctors, radiographers, HCA’s, physios, dieticians, OT’s, psychologist, cleaners and porters. I’ve probably missed some but you were all amazing and saved my life without a date one more time  How can I ever repay that…

Filling the gap 1

It’s been way too long since I wrote a blog. I thought I’d try and get in the knack again and explain more about the long gap. 

During the pandemic I managed to keep myself safe with mask wearing and good hand hygiene. I was still backwards and forwards to the hospital, and did not pick up the virus. 

In 2023 after 3 years of no travelling and no holidays, it was decided that I could travel to Ireland. My family are fortunate enough to have a small house in the Kerry mountains. It’s always been an amazing bolt hole for me. It’s almost like, when you breathe the air there, it fills up more of your lungs. The house is a kilometre or half a mile from the village. The village is remote and 30 miles from the nearest railways station. There is a general hospital just over an hour away and the main university hospital is in Cork which is just over 2 hours away.

Before leaving London, I made contact with Cork hospital as that’s where the haematology unit was. I explained about being immunocompromised and travelling for the first time. They took all my details and hoped I had a lovely trouble free holiday. 

A few days later I started to feel unwell. I did a covid test and to my horror it came back positive. I rang Cork hospital and explained. They rang Kings in London to confirm what I was saying. They then rang me back and said they would send the prescription to the village pharmacy but to leave it a while before collecting to allow the process to go through. Not long after this, there was a knock at my door and my neighbour, who also works in the pharmacy, hand delivered the antiviral medication. It was probably quicker and smoother than negotiating the system in London. I was very well looked after.

My long suffering partner Maggie picked up the virus and Sönke who was with us also had the virus. He probably had it first. Both he and Maggie felt awful and had to go to bed for a couple of days. We also had 2 of the grandkids with us. They didn’t get Covid despite 3 adults in the house being positive. I looked after the kids and got drinks and snacks for Maggie and Sönke and sorted the kids out. When the others started to feel better, Sönke asked me if I was bionic because I just carried on. Lol. I told him I was very used to feeling unwell and carrying on, whereas he and Maggie were usually fit and therefore not so used to doing things when you feel crap. 

Any way for the purpose of brevity the story continued with Maggie and Sönke getting back to normal very quickly. I continued to test positive for Covid for months and months. I had a rotten cough and I had to be seen in isolation when attending the hospital. I finally tested negative in the December, I think. Then a month later picked up rhinovirus which is the official title for the common cold. I continued to to test positive for this for months. I finally tested negative and we decided to go to Ireland again. They say lightening never strikes twice in the same place. Unbelievably, in that small remote place in Ireland, I picked up Covid again. 

Once more I tested positive for ages. I think I spent the best part of 18 months being treated in isolation and not seeing my regular consultant. The constant viral infections played havoc with my chest and has left me with an almost permanent chesty cough. 

On top of this my thyroid was all out of sorts. Unbeknown to me, despite taking Levothyroxine, my thyroid was running consistently low. How it impacted on me is I lost my mojo. I felt really flat and thought I was suffering from depression. This is not something I’ve suffered from before. It was like my get up and go had got up and gone. 

I plodded on but was finding life difficult. I still had loads of hospital appointments. At one of these an older woman noticed my name on the screen. She asked me if it was me who was blogging about life with MDS and the treatment effects? I said yes and she grasped my hand and said she was so pleased to meet me. That gave me the push to write a blog again as at that point I hadn’t for about a year. I started to write a few blogs and the last entry was October 2025. 

On 9 December 2025 I went into hospital for a minor procedure under general anaesthetic. Even though it was a day case, they had booked me a bed because of my complications but if I felt fine, I could go home. 

I remember going to the loo and feeling very faint on my way back. I told the nurse and he grabbed hold of me. He got another colleague to take the other side of me and was yelling for a trolley. The nurse he was yelling at didn’t quite understand and was bringing a chair. I thought it was funny but knew I was going to pass out any minute. They just got the trolley as it went dark for a second. As that had happened and I was in pain they decided to admit me. 

Maggie settled me into bed. She said I was a bit out of it and kept dropping my tablets. She thought it was because I’d had morphine. If only we knew then what we know now. Maggie left that night and that’s the last thing I remember for just over 2 weeks. 

I will continue this unbelievable story in a separate blog as I don’t want to make this too long. 

Thanks for sticking with me and I hope to get back to regular blogging. If I don’t, you have my permission to poke me and give me a kick in the right direction. 

9th Rebirthday

 Today is my 9th rebirthday. Wow! Double figures next year! I am amazed to have got this far. It wouldn’t have happened without the support of my wonderful sister Gail and her gift of life to me in the form of stem cells. 

During the month that I was in hospital, Gail and Maggie came every day. They made such a difference to me and what was great is they were able to support each other. It was an intense time for us all and the love we all have for one another was deepened. 

These 9yrs have not been easy. In fact I’m more disabled now than I was before the transplant but at least I’m still here. I know there will be more struggles to come but with the continued love and support of my family and friends, I know I’ll get through it until my time comes. Thank you to all who have been part of my journey. Either the 16 years with MDS or the 9 years with post transplant complications. Thank you to my amazing medical teams mainly at Kings but also at Guys. 

The sad thing is over these last 25 years I’ve had to say goodbye to many. This has been either through dying from the blood cancer or because friends and acquaintances just couldn’t cope with my level of suffering and ill health and have slowly withdrawn. 

You need to dig deep when you experience a cancer diagnosis. The ramifications on physical and mental health are severe but it’s not just the illness and the treatment, it’s also the changes. Changes to friendship groups, changes to physical ability, changes that lead to a minimal social life, changes to the way and how long you can holiday for. These are just some of the difficulties. 

Cancer also has some positives. It brings you much closer to the people that love and care for you. It stops you sweating the small stuff. It gives you an opportunity to give back like I do with cr_uk and MDS UK Patient Support Group and kingscollegehospital. I may not be able to sing like I used to which would always make my soul smile but I have learned to live deep in my soul and for that I’m grateful. 

“Life is only 10% of what happens to you. The other 90% is how you respond to it” #mds #bloodcancer #Cancer #cancerawareness #SurvivorStrength

Remembering October

 

October is one of those challenging and uplifting months all at the same time. The reason is I have loads of significant dates in the month attached to important people in my life or important events. 

3 Oct is the anniversary of my lovely chosen mums death. She was sos special and there are times I long to talk to her. If I still myself I can still hear her voice. 

9 Oct is my eldest grandchild’s birthday. He is 22 now and making his way in the world. He is a lovely soul and I’m so proud of him. 

9 Oct is also the anniversary of my priesting.  I was ordained priest in the morning and went to Alfie’s 1st birthday party in the afternoon. So that makes me 21 years a priest. 

11 Oct is mine and Maggie’s anniversary. 34 years this year. She is the love of my life and my rock. I don’t know where I’d be without her. 

11 Oct is also the day I had my first bag of chemo 9 years ago. 

12 Oct is the anniversary of the death of the forever young Vicky. This feisty imp died when she was only 20. She was a tiny dot due to her cystic fibrosis but she left a huge impact on all who knew and loved her. Her birthday was so important to her. She made such a fuss about it so I never forget it. She would have been 37 today. 

21 Oct is my 9th rebirthday. It’s the day I got my sister’s stem cells and my life was saved. It was also changed forever. 

25 Oct is World MDS Awareness Day. MDS was my rare blood cancer. I was formally diagnosed in 2000 though I had weird blood tests going back to the 80s. 

So you can see that October is an emotionally laden month for me. 

I haven’t blogged for a year because I’ve been going through stuff. I think it’s about time I got going again. Expect more from me in the future. 

Love and hugs folks 

Rebel Rev AKA Kes

I’ll be back soon

Sorry I haven’t been posting for a while. I’ve been a bit like a water bug in a cocoon. As soon as my dragonfly wings appear I will start to fly again and will come back to this forum. Please bear with me.

Audio Diary Special Sister

 https://www.bbc.co.uk/sounds/play/p0jz5654?partner=uk.co.bbc&origin=share-mobile

Hi everyone. Something different from me this week. If you can access BBC Sounds do check out this Sunday Morning Breakfast show. I’ve done an audio diary for 8 years with BBC Kent. This time last year that changed to be broadcast out to Sussex and Surrey too. This unique episode explains why despite everything I have been through, this is one of the hardest years of my life. The show runs from 6-10am. Please do listen as it has some great segments and a lovely presenter and producer. My slots airs around 7.40am if you want to tune in live in future. If you can use this link and just want to tune in to my slot the move the cursor on 1.40 and I’ll be around there abouts.