Rare Diseases Day 2023

 Today is Rare Diseases Day. I’m going to try and paint a colourful picture of what life is like when you are diagnosed with a rare disease. 

I was in my early 30s when diagnosed with the rare blood cancer MDS (Myelo Dysplastic Syndrome) This is an illness that affects more men than women and also occurs more in people 60 plus. I was a young fit football playing hard working manager of a women’s centre. I did not fit the typical picture. 

Many of us now understand the economy of scale when it comes to health now. The pandemic has created a mass of data that will be analysed for years to come. Because so many people have had covid all medics are aware of it and have treated it. They recognise it and they now go to techniques that they know work for people. 

Imagine now that you have an illness where a GP might see a case once every 15 years. They are not going to be so familiar with what to look for or how to treat it. For a few years prior to my MDS diagnosis I was prodded and poked by many great and good medics who just scratched their heads at me. Then within this rare diagnosis I’m also an anomaly. That has never left me. It means that often, no one knows why I’m the way I am. Many times I have a test and it comes back not quite right. For example I’ve been having treatment for osteoporosis caused by being on steroids for so long. I’ve had stress fractures caused by the illness in my back and neck. Despite gold standard treatment over the last few years to treat the osteoporosis, the illness has progressively got worse. The doctor looked at the results and said “this is highly unusual” I just sighed. She then organised some extra blood tests. Surprise surprise these have shown something unusual. 

I’ve had to learn to live in that space where you can’t know everything that’s wrong with you. You just have to live with it and trust that the right thing will become obvious at some point. I also have faith in the consultants charged with my treatment. 

Show your colours is the theme of this years Rare Diseases Day. I’m blessed to live in a time and a country that despite the rarity have kept me alive and functioning for nearly 23 years.  My colours get a bit dimmed at times when I feel rough and don’t have an answer to why but I refuse to let the darkness take over me. Instead I find myself always looking for the light. I’ve learned the more light you let in the brighter your world becomes. #rarediseasesday

World cancer Day 2023

 

As it’s World Cancer Day I thought I should do a short blog. In this blog I shall take you through my appointment with a new consultant which created much hilarity for me and my family when I regaled them with my tale. 

This week I had my first appointment in the Osteoporosis Clinic. I met a really lovely consultant who was genuinely interested in looking at the whole of me not just her little specialism. She explained that each of my Dexa bone density scans have got progressively worse despite being 2/3 of the way through treatment. She said this was somewhat unusual. The plan is to have the last treatment to complete the course and give it time to work. Then repeat the scan and depending on the results move to the next level medicines. In the meantime she wanted me to have a blood test and also to do a urine sample. 

After saying goodbye to the doctor I trotted off to the loo. Now for those of you who have never given a sample before, the pot you get to pee in is a small tube. Women are not able to as easily aim as men. I managed to pee all over my hand. Sigh! As I was trying, rather awkwardly because of my wet hand, to sort myself out, I managed to knock the sample and spill wee all down my leg. I managed to only save a dribble in the tube. Bigger sigh! The nurse told me there wasn’t enough and I should come back another day. It takes me an hour each way to get to Kings so that’s not my first choice. I had to get a blood test anyway. Next I head off downstairs and pick up a bottle of water so that I can pee again. 

The blood test was completed very quickly. I waited a little while and then I headed to the loo again. Now though, I’m in the public loos and not the ones upstairs in outpatients. It means I have to keep my coat and rucksack on as I don’t want them on the floor. 

One of the problems caused by all the treatment I’ve had is that I suffer from urge incontinence. When you’ve gotta go you’ve gotta go and the closer to the loo you get the stronger the urge is. Now I have to quickly get my trousers down, next my long johns and then undergarments. Then I need to raise my thermal top, tee shirt, hoodie and coat and finally need to position this tiny bloody tube and try and look to make sure the wee is going in the tube all the while fighting off the urge to panic that you will start weeing before getting clothes out the way. As you tilt your head to look if all is ok, the final insult is that your varifocals move off your nose and you are now as blind as a bat. Bigger sigh! 

Despite being a great multitasker I struggled with getting this sample. I managed to only get a couple of mls in the tube but I had a very warm and well washed hand! Lol

I could really see the funny side and had my partner in stitches as I was explaining my predicament. Having a sense of humour and being able to laugh at yourself is invaluable and a great way of keeping one’s sanity. 

Having serious osteoporosis at my age is a bit of a blow but is not unexpected. I’ve taking steroids since 2014. Steroids ravish your body in so many ways. Alongside the osteoporosis I also have a cataract and adrenal insufficiency all curtesy of prednisalone. 

This World Cancer Day I want to raise awareness of the late effects of cancer and its treatments. Many of us maybe clear of cancer but have a whole host of issues due to all the toxic medicines we’ve taken. We may look healthy on the outside but that’s just a facade protecting a very fragile body. 

Today I stand in solidarity with all cancer patients and their families but I also share a smile and a giggle at the amusing moments this journey brings me. 

Missing Neighbours!

 

Having spent so much time shielding over the last 3 years, I’ve had the space to be even more of a reflective practitioner. I’ve recently been thinking about the little ways we comfort ourself using psychological techniques without really realising it. 

When the soap opera Neighbours started, I would watch as I was young at the time. Also my lovely “chosen mum” Marlene was  Australian and it made me feel closer to her. I loved the unusual sounds of the birds in the garden or outside shots. I also picked up lots of Aussie turns of phrases such as:

You’ve got Buckley’s or Buckley’s chance, meaning you’ve got no chance

You little ripper

Crack open a tinny

Put another snag (sausage) on the barbie 

Thong for flip flops 

Bludger meaning lazy

Cobber meaning friend. 

I continued to watch neighbours as the years went by. I went with Marlene to Australia when she went back to do a book launch. I went back several years later when she retired back to the place of her birth. She loved showing me her country. 

6 years ago Marlene became seriously ill and was diagnosed with 4 brain tumours. She died within 2 months of becoming ill. I had just come out of ICU and wasn’t able to travel to see her. I was heartbroken at not being able to say goodbye. 

The following year I had my transplant. It was something she always wanted for me as it was a chance to get well and reclaim my life. I felt her love and encouragement but missed her so much. I’ve always been a street urchin and a really stubbornly independent feisty imp. She was the only person I ever let fuss. She would put a flannel on my head if I had a temperature or a headache. She’d tuck me into bed. She would cajole me to eat and drink. I know Maggie’s life with me was made easier by Marlene teaching me how to give and receive love. 

Neighbours continued to provide a small link for me to Marlene despite her untimely death. When it was announced that Neighbours would cease production in July, I was so upset. Weird how these small things have an impact. I just haven’t been able to bring myself to watch the last 40 episodes that I have recorded. 

I’ve been feeling a bit rough the last few weeks. As often happens after I’ve had a serious infection, my counts have significantly dropped and the team decided to put me through another bone marrow biopsy. These are awful and a necessary evil if you are a haematology patient. The procedure requires you to lay on your side and bring your knees up. Local anaesthetic is injected into the skin and the needle is pushed in further and further until it hits the bone at the back of your hip. That needle is then removed and a very fine needle is pushed into the centre of the bone marrow. Once located properly a syringe is attached to the needle and the liquid part is taken out. Once they have enough for 4 vials and several slides, they then take that needle out and insert what feels like a cork screw. This is twisted in to the solid part of the marrow and is the separate slice you see. That bit is the worst part of the procedure. After this pressure is applied to control any leakage and then a pressure dressing applied and you have to keep it dry for a couple of days. 

I like to hold my phone while having this horrible procedure done. It’s a way of being connected to all those who I know are thinking of me. Strangely my phones screen save came up with a lovely shot of me and Marlene. It was like she wanted me to know she was with me. Also in the middle of the procedure, Maggie called. I couldn’t answer but I did text her back. The nurse doctor and Maggie were impressed that while having something so horrible done, I could still interact with the world. 

So coming back full circle, I spent a day in bed this week. That’s highly unusual for me. I had heard the news that Neighbours was going to come back on our screens after new sponsors were found. I decided that as I’d been thinking so much about Marlene, I should watch the last episodes of Neighbours that I had recorded. Hopefully I can drag it out long enough to join up with the new edition of Neighbours when it is resurrected later in the year. Like I say, it’s strange the things we do to comfort ourselves. I’m just really glad that I can continue to feel connected to my lovely chosen mum. One day I hope to be well enough to go back to Oz and pay my respects to Marlene by visiting where she was laid to rest. Until then I have my memories and I also have Neighbours. 

I wrote this a month ago but didn’t post as I felt rotten and wanted things to settle. I needed blood transfusions and antibiotics to get me over my serious blip. My neutrophils were at 0. My HB only 73. I had no puff and everything was hard work. 

I’m happy to say things are better. My counts are sorting themself out. The team are happy it’s my inability to deal with infection rather than the transplant failing. It’s weird to think that my transplant is deemed as successful. There are no cancer cells in my blood now. Yet despite this, my quality of life is much worse and the physical disabilities that I’m living with make life a challenge at times. I know that I’m one of the lucky ones. I have friends who aren’t or haven’t been so lucky.  My heart goes out to them. I also extend my love and prayers to all who for one reason or another have struggled with regaining their health post transplant. Thank good there are a few success stories too. These people help to keep the balance. One day I hope to join their ranks but for now I just grit my teeth and plod on. 

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! 

Football crazy

I 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.