World Blood Cancer Day 23

 A little blog to mark #worldbloodcancerday #thisisbloodcancer. The picture is me on my new swing in the garden. Behind me you can see a large red Kes. This was made for #makingbloodcancervisible. The art instillation was sponsored by @janssen and were displayed in Pater Noster Sq outside St Paul’s. The signs were built to the height of the person and on the flat side had a bio with each persons respective blood cancer and a bit about that person. It was a very effective and sobering experience to see all the names in the Square. 

The years that my body has been dealing with blood cancer and the effects of treatment have taken there toll. You can see the impact all over me in the scars I carry. The amazing thing is I’m still here. That’s only possible because my sister proved to be a match as there were no obvious matches for me on the registers. Did you know…?

• Blood cancer is the fifth most common cancer in the UK.
• Despite being the fifth most common cancer, blood cancer doesn’t have anything like the public profile of the other four common cancers. Unfortunately, our recent survey found that this low awareness means people affected by blood cancer are paying the price. 
• Because blood cancer doesn’t have the same profile as the other five most common cancers, people are less likely to be diagnosed quickly.
• Leukaemia, lymphoma and myeloma are ALL types of blood cancer
• Currently, four out of ten UK patients looking for an unrelated blood stem cell donor will not find their lifesaving match
• Every 27 seconds, someone somewhere in the world is diagnosed with blood cancer
• Blood Cancer Is an Umbrella Term for Cancerous Growth in the Blood, Bone Marrow or Lymph Nodes That Affect Normal Blood Cell Production or Function

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• The official symbol for World Blood Cancer Day is the red ampersand sign — which shows solidarity with those affected by blood cancer
• 4 out of 10 people in need of a blood stem cell donation worldwide are still unable to find a matching donor.
• Every year, over 70,000 people in need of a blood stem cell donation search globally for a matching donor outside of their family

So what can you do to help?

• Join one of the registers. It’s a simple mouth swab sent in the post. Anthony Nolan take people 18-30. DKMS take people 16-55. Donating if you are chosen is not hard either. It doesn’t involve and operation and is like an extended blood donation procedure as they take the stem cells from circulating blood. 
• Give blood. Many of us need blood, plasma and other blood products on a regular basis. We are only kept alive by the generosity of strangers. 
• Spread the word on social media so that more people know about blood cancer and what can be done to help. 
• Join MDS UK as a supporter or donate to the charity. It really is a small charity that makes a huge difference. 

It’s amazing that I’m still here after all these years. Many of the wonderful people I’ve met haven’t been so lucky. This world blood cancer Day make a difference. There can be no better feeling than helping another. 

Life’s been ganging up on me!

 

It’s been a while since I’ve written a blog. This one will be meaty because so much has gone on. Sometimes it’s hard to see things for what they are when you’re in the middle of it all. Hopefully writing it all out will help me to continue to process life, the world, the universe and what you do when it seems life is ganging up on you and winning. 

I have four beautiful grandchildren. The three boys are all over 6 foot. The youngest of these is 15. He thinks he is a man as he has a man’s body but those of us looking with the aid of perspective know that he is still a child. The following saga unravelled on a day where myself and my long suffering partner had just sneaked away for a few days break in my cousins granny annex in Nottingham. We were just relaxing and catching up when our daughter rang really very distressed. It turns out that this young grandson had been set up by a former girlfriend and he was beaten up by her brother and 3 of his mates. These 4 men jumped out of a car wearing balaclavas. They stamped on him and stole his very expensive trainers. They were disturbed by someone coming out of a nearby house. This poor woman called the ambulance and police. She thought my grandson had been killed as he was so still. She was very relieved when he moved his head. She took him into her house bleeding and crying. That woman is owed a huge debt of gratitude. I hate to think what would have happened without her intervention. 

When something like this goes off uninvited in the middle of a family, everyone is affected. It’s not just the person in the middle. The ripple effect means parents, grandparents, siblings, aunts, uncles, cousins, friends etc all become caught up in it. It takes reserves and resilience to work through it all. It’s important that the anger and fear have a voice but it’s also important to try and be objective and reasonable. 

As a family we have many resources we can tap into. We are fortunate in that respect. Despite all of that it seems there will be no criminal charges because the police didn’t gather enough evidence. This whole experience has made us realise how decimated the police service has become and how ineffective their communication systems are. One of the officers did a good job but despite all this, it seems the criminals will get away with it. In the meantime we, as a loving family, gather around each other and support each other. 

The next thing to come my way was that I had an MRI of my hips due to some increased pain. I hadn’t had the results of this when I had an appointment with the pain consultant. That appointment was to give me a trigger point injection into my sore and stiff neck. I’ve been complaining about my neck for ages. It’s often got knots in it that radiate down my shoulder blade and over my collar bone. At times it’s becoming a quality of life issue. While the Dr was preparing the injection she also checked the MRI as I mentioned I’d had it. She told me a small area of avascular necrosis had shown up in my right hip. This is not good news. It means that the steroids I’ve had to take over the years have caused a bit of my hip bone to die. It will eventually lead to a hip replacement. I was a bit shocked about this on one hand but not surprised on the other. I had my injection and went home to digest the news. 

It’s so important to give yourself time to process these things that come along unexpectedly. Sometimes just sitting with it and letting it wash over you is a way of becoming acquainted with the latest challenge. 

The following week I had an Aclasta Infusion. This is because I have osteoporosis, again caused by all the steroids I’ve had over the years. The osteoporosis consultant had delayed the infusion by a month as my calcium was a little low and she wanted to boost these levels as they help with the absorption of the infusion. 

The infusion is given via a drip once a year for 3 years. This was to be my 3rd dose. I’d not reacted to the other 2 so had no worries. The next night I woke up shivering and with a temperature. I threw up and had the most painful neck spasm I have ever encountered. I’m quite stoical and don’t show my pain externally. This was so excruciatingly painful that it made me yelp and cry out loud. 

I contacted my wonderful haematology team. They got me in and prescribed a short course of diazepam. This wasn’t quite strong enough. Then my wonderful haematologist and rheumatologist made a joint appointment to see me. This coincided with the junior doctors industrial action. I fully support all the medics in their protests. I can see with my own eyes how badly affected the NHS is by serial underfunding. It’s not safe at times now on ordinary days. Something needs to change. The consultants are often 100% behind their colleagues and they run the wards in their absence. Despite all that going on these two wonderful women and a CNS gave me their time and wisdom in looking into what was potentially going on. I was prescribed a different medication and once that was at the right level it began to have a benefit to me. They also organised an urgent MRI of my neck. How amazing is that! 

The MRI showed ongoing wear and tear changes. Also the previously seen neck fraction and upper back fracture. There was also a rib fracture too. There is nerve compression due to the collapsing vertebrae as well as a shift apart creating a bit of a step on the vertebrae. It’s no wonder it bloody hurts. 

It took me 5 weeks of lying propped on my couch before I could try my own bed again. It was the only was I could get comfy. My poor long suffering partner had never seen me like it. I never just lay still. I awkward try and do something even when I’m very weak. Once, when I had pneumonia it took me 45mins to make my bed. I was determined to do it. This neck pain was off the scale. I couldn’t concentrate. I was still throwing up. I couldn’t drive and my infection and inflammation markers which should be below 5 had jumped to 170. I felt bloody rubbish. 

I was given ongoing pain meds and regular appointments to keep an eye on me. Victoria, the haematology consultant was very close to admitting me. My weight was still not good and I was just getting frailer and weaker. 

I normally do all the driving as I like to and my partner likes to be driven. It was hard to have to rely on her and see her getting stressed at some of the traffic conditions as we made our way through London. She also had to listen to me wincing every time we hit a pot hole or a speed bump. 

On one of these check up days we got in the car and Maggie said to me “where’s your bike?” Regular followers of mine will know I recently got my 125cc scooter back on the road. I’d only ridden it a few times when something made me think again. I went to go in the bathroom and caught my arm on the handle. This caused my fragile skin to rip and flap backwards. I knew it would be foolish to keep riding the bike with skin that rips so easily and bones that could fracture with very low force. I had decided I would sell the bike and treat myself to a new big tele. At least that’s something I can still do. It was hard to make that decision.  I first started riding bikes when I was a kid in the woods. I got my first 50cc when I was 17. As I improved and had a bit more money so I got bigger and bigger bikes. Going from 50cc to 125cc then 250cc before halting at my SV650cc. This was the largest bike I could ride with my short little legs. It was possible because it was one of the few bikes you could lower the seat on. 

I’ve included pictures of my various bikes so you can see what I’m talking about. The bike for me was a symbol of my freedom. I could go anywhere and I wasn’t afraid to drive round Hyde Park Corner of take off through the New Forest. I felt as one with the bike and fluidly moved through the air. I’ve suffered from nausea for many years. When I am on the bike and have the air blowing through me, it takes the nausea away. 

I enjoyed turning up for services in churches that didn’t know me or at the crem and people would do a double take at this small woman on a big bike. You could see the nudges and the smiles when I undid my leather jacket and they could see my clerical shirt. I’ve always defied being put neatly in a box. 

So you can see that me deciding to give up the bike was a big thing. I had intended to go for one last ride to say good bye but some thieving scumbags took that away from me. To add injury to insult they also scratched my car getting the bike around it. I was gutted and really upset but had to continue to Kings for my appointment. 

Now a month on I think that maybe whoever took it did me a favour. At least I won’t have to try and sell it privately. I’ve also decided I will not be denied my last ride and will find a way to do this even if I just have to hire a bike for the day. 

A few days later Maggie and I were heading off to Kings again and this time the car wasn’t happy. None of the keys worked. I knew it wasn’t the key fobs as I’d changed the batteries recently. We had to make alternative arrangements and I would ring the RAC when I got home. 

The RAC told me they would be with me around 9pm. The length of the wait was due to me being at home and less of a priority. Sadly the fella didn’t turn up till midnight. The 12v battery was dead. The car is only 4 years old. This shouldn’t happen. It was being driven less frequently because of me still being propped up on the sofa and unable to do much. The mechanic jump stated it then poor old Maggie had to take it for a 45 minute run. 

Sometimes you really feel the weight of these problems and it seems that life is not being very kind. 

One of the hardest things that happened was my lovely friend Fiona died after her transplant failed. She and I had been MDS pals for 23 years. We were both sporty, women and young. Most people diagnosed with MDS tend to be older men. We didn’t fit the bill so we stuck together. For a while we were joined by another woman called Sharon. All 3 of us had different types of MDS and were committed to setting up a patient support group. MDS UK was the fruit of our labour. Once it was up and running I bowed out as I was raising my family and studying theology as well as working full time. Even just writing that now makes me feel tired. It almost seems incredulous to me that I had that energy and drive at that point in my life. 

Sharon was the first of us to need a transplant. Sadly there were no donor matches. Despite a brave campaign by her family, she died before a donor could be found. 

I had my transplant in Oct 2016. As regular readers will know this how not been plain sailing. The cancer may be in remission but the effects of treatment have ravished my body and I’m now very frail compared to how I used to be. 

Fiona lasted the longest before needing her transplant 2 years ago. I was desperate to attend Fiona’s funeral and honour my long term friend and MDS buddy. Problem was I was having enough trouble getting myself together to go to Kings. There was no way I could have safely got myself to Birmingham. 

I was so upset by all of this that I couldn’t even bring myself to watch the live stream of the funeral. I’m not a big why me type of person because I do think why not me. Thinking about Sharon and Fiona and being the last one still around makes me wonder why am I still here? What is there still for me to accomplish. These are all heavy questions that show a spirit in angst. Once again all I could do was sit in the pain of it and wait for things to improve. 

A few days later I had the strength to watch the funeral recording and see the love that went into sending my friend back to God or The Universe whatever belief works for you. Her loving husband and family did her proud. Thank you Fiona for you companionship over the years I’m proud to say you were a friend and I know you will reap the rewards of a life well lived. 

Another important event I missed was as my lovely friend Michelle’s inquest into her tragic death. I wanted to be there for her family as I know how hard these things are. Instead I was propped on the couch and all I could do was send messages of support. It’s so frustrating when you can’t rely on your body and you miss out on so much. I was always a very reliable person. If I said I was going to do something, I would do it. Sadly that’s not true anymore. I’ve had to learn to say I’d love to do that but may be unreliable due to long term illness. It’s a real frustration for me but there’s nothing I can do about it apart from own it. 

After the best part of being on my couch for 6 weeks I started to turn a corner. I was wincing getting up rather than yelping. I always wake up in pain. If I didn’t, I would think I was dead! Lol. I can manage the pain being a dull roar and that’s where I’m back to. I must confess though I’m slightly anxious that it will happen again I told the consultant that if I knew that walking over hot coals would fix the problem, I would do it. I was desperate. 

The last couple of months have been tough on me and those closest to me. I always hold on to the belief that tough times don’t last but tough people do. Sometimes all you can do is grit your teeth and know that “this too shall pass” 

I wouldn’t say I’m totally out of the woods yet but I’m able to do a few things again. Last week I was one of the patient reps at the opening of the newly refurbished haematology ward that I’ve been a patient on. Dame Kelly Holmes was the invited guest. She spoke movingly about her mum who had blood cancer. She used to come to Kings for her appointments. It was a lovely event and it was great to see the thought and care that had gone into the refurbishment. 

I’m at Kings again today. This time I’ve driven myself. Things are gradually getting back to what my normal is. My encouragement to all of you is just be brave enough to sit in the pain for a while. Sometimes that’s all you need to do and it will pass. “I love the light for it lets me see the way and I love the dark because it lets me see the stars.”

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!