Rare Diseases Day 2021

Today is Rare Diseases Day. MDS or to give it its full title myelo dysplastic syndrome is rare enough. Within that group diagnosed with MDS there are many subgroups. Mine is RCMD which stands for refractory cytopenia of multi lineage dysplasia. On top of that I have hypo cellular bone marrow and an autoimmune component to my illness. If you are already a rare group the subsets are going to be even rarer. This can bring about many challenges. We are all unique and respond differently but sometimes safety in numbers has its advantages. We only need to look at the current pandemic to see that in action. In order to get clinical trials through and to get good quality data you need as many participants as possible. With Covid19 you can get 100s of people every day. This has enabled the science to move on in leaps and bounds. That's not the case with rare diseases. A GP would be lucky to see just one case of MDS during their career. Local hospitals may only have a few patients. Thats why it's so important to have an addition opinion from a Centre of Excellence where they see most patients. I'm really fortunate to be looked after by Kings in London.

I've been dancing with my cancer for 21 years now. I had a stem cell transplant in 2016. I'm still living with the complications of the cancer and its treatment. I say I dance with my cancer because I don't like the battle terminology. When people say so and so lost their battle with cancer, it makes me shudder. People don't lose their battles. My experience is they struggle on right up to the end giving it every bit of strength and courage they have. If you go into remission, it doesn't mean you've won and those that don't win have lost or not fought hard enough. It just means the cancer was overwhelming. Cancer is an awful thing and very unpredictable for some. The dancing imagery suits me better. Sometimes I'm dancing so fast that I can hardly breathe and after that particular music stops I collapse into a chair exhausted. This might be dealing with yet another infection that has led to sepsis, which I've had many times. Other times there might be months go by where all I can do is be held up by the love and support of who is dancing with me and slowly shuffle my feet. Sometimes I waltz with my medics going this way and that as we try different medications and treatments to help my quality of life. I hope that helps make sense of how language can be challenging when talking about illness and cancer.

My latest news is mixed. I have hands that are like sandpaper both sides. They are also hot which is highly unusual for me as I'm normally so cold that I joke with people that I'm part lizard. On top of that my fingers are stiff and I'm not as dexterous. I struggle to pick up individual tablets. My nails keep peeling and splitting too. Strange that so many things are going on in this one small area.

The rest of my skin feels irritated and slightly burning like I've been in the sun. It's also very dry and sadly still itchy. It doesn't feel like sandpaper, as my hands do, but it feels quite taut. I've always had very soft feet. I never go barefoot and I never wear uncomfortable shoes. I'm mainly in trainers or ankle boots with a good sole. If I was to wear high heels, I would walk like a parody of a man in drag. I just can't do it. I also don't wear sandals or flip flops. Despite all of this I now have hard dry skin, the kind that people who are on their feet for ages or don't wear shoes get. It's weird.

My mouth is also really giving me grief. I keep getting blood blisters and ulcers and a sore tongue. I've also lost two teeth in the last year, both of which have snapped. On doing some research it seems this may be linked to the high dose steroids that I've taken on and off since 2014. 

my lovely consultant, Victoria, has managed to secure permission for me to have a new medication that may help with some of these challenging symptoms. I've been taking them for two weeks and not had any side effects. They should start reaching the efficacy point after 4 weeks. I'm keeping everything crossed that this is the case.

My legs are challenging me these days too. It seems if I'm standing, like doing the ironing or washing up, my muscles go tense and feel really tired. I was cleaning a chair the other day in the garden and it made my stomach muscles feel like I'd completed 50 sit ups. How can that be? It's all perplexing. My muscles have been really weak for ages and I tremble when I hold the kettle or try to pour a jug of water into the steam iron but this seems to have gone up a level.

One good thing to report is that since taking the new medication for the gastroparesis, I've had less reflux. It still happens but it's not several times every night like it was. It's a horrible feeling waking up choking with a burning throat. Let's hope it stays calmer.

Regular readers will remember that I had this weird episode where I partially lost vision in my one good eye for a very short time. This has happened twice since with both occasions happening in the last few weeks. This has baffled the team. At the time I was checked by Moorefields Eye Hospital, who confirmed cataracts but no major problems. My team at Kings decided to check the blood vessels in my neck with a special scan. I also had a 24hr ECG and this week will have an echo cardiogram. I'm glad I can't travel on public transport. With all the pipes and wires hanging out of me for the duration of that test I would have generated fear and panic in London!

Alongside dealing with all of this, the next biggest issue on my horizon is when can I come out of lockdown? When will immunocompromised patients have hope because vaccines can be ineffective in many of us? I'm doing ok so far but the thought of indefinitely being stuck in my house is almost too much to contemplate. I try not to let my thoughts run away with me on this subject. I know the medics and the scientists are working really hard on making it safe for people to rejoin society. I just hope those that will be left behind don't have to wait too long to catch up.

It can be tough keeping your inner resilience. Sometimes it can feel like you're going to buckle under the weight of it all. When the young students used to talk to me about their problems when I was their school chaplain, I would tell them they had the power to change the world. They would look at me as if to say "Yeah right" but I would follow it up by saying "to the world you are just one person, but to one person you might be the world. All you need to do to change the world is start with the person next to you. If you notice they haven't got a smile, give them one of yours, you have an unending supply" They always left me walking slightly taller and with a smile on their face. Well I need to practice what I preach and make sure I keep giving the love away. As long as I've continued to give and receive love then I've done alright. One of my favourite funeral poems ends "love doesn't die, people do. When all that's left of me is love, give me away"

World Cancer Day 2021

 Today is World Cancer Day. It seems appropriate to do a blog today 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 said 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 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. 

As the years rolled by the appointments got closer together as my illness progressed. I’ve had sepsis around 14 times. I’ve had serious line infections from having a hickman line inserted into my chest which would sit just above my heart. Last year I had 2 types of flu and have had flu every year since I had my transplant as well as a few times before. I’ve had NG and NJ tubes and still have a PEG J inserted in my tummy due to long periods of not being able to eat. 

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. 

After all these years of cancer being my constant companion officially for just over 20 years but as you can tell early signs were there over 30 years ago, I now live a very different life. 

I had a stem cell transplant in Oct 2016. My younger sister was my donor and my life was saved by the amazing team of haematologists and allied health care professionals at Kings many times over. My life has definitely been saved but at what 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 during this awful pandemic. 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 has taught me to live deep within my soul. 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. 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. 

I saw Victoria, my dedicated consultant on Tuesday. I have IVIG once a month. This is a drip and stands for Intra Venus Immuno Globulin. It gives me some antibodies to try and help me to have an immune response. Victoria told me one of the things to be looked at is adding covid antibodies into the mix to see if that helps people like me who probably won’t respond fully to the vaccine. Scientists and doctors ans Pharma companies are so clever. Let’s hope they find a way for it to work. 

Victoria also said that she would look into a new drug that may help me. She was going to discuss it with her colleagues and then see if I would be appropriate for funding. It’s so good that the team behind me are still committed to making me as well as possible. They haven’t given up on me once. I’m am touched by 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 on. 

Tomorrow I have my covid vaccine. As said, no guarantee it will work but even if it gives me a tiny bit of immunity it’s worth it. I’ve been told very clearly I need to continue shielding for the foreseeable future. Regular readers of mine will know this was hard news to swallow and made me feel down for a few days. I’ve bounced back as I usually do because I have to choose to live in hope. 

To all of you at different stages of your own story, 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.

It’s tough going

I don’t very often feel low but I must confess I am feeling a little down. At first I thought it was because it’s my birthday next week and I can’t be with the family and friends that are important to me. On further reflection, I don’t think it is that.  I think it’s deeper. 

When the clinical trials were taking place for the vaccines they were unable to test the efficacy in the blood cancer community as that would be unethical. Also those of us that have had a transplant also have the additional problem of being on immunosuppression drugs and having a wonky immune system that doesn’t respond as others do. 

The research that has been carried out since has shown that people with solid tumour cancers respond well to the vaccine but blood cancer sufferers don’t respond as expected. This means we have to continue to shield. We may have a good response, we may only achieve a small response but we will never cope well with infections, especially one so deadly. 

In the next few weeks I will have been shielding and leading a much more limited life for a year. I feel that in general, I’ve coped very well. I’m made that way. I just take it on the chin and get on with it. However, the thought of this going on indefinitely is almost impossible to bear. 

I’m gregarious by nature. I love new experiences, meeting new people, socialising, singing, being close with my family and hugging my grandchildren. Since the diagnosis of blood cancer 20 years ago, I’ve lost so much. My fitness and ability to enjoy and love playing sport. Riding my motorbike. Working. Dancing. Walking in the woods and cliff tops. Staying up all night because something fun came up. The list is endless. Because I’m me, I’ve adapted to all these things but sometimes enough is enough.  I wish I could scream but it’s not in my nature.

On top of this relentless isolation and boredom at times, I’m having a flare in symptoms. My skin is really hot, dry and itchy as is my mouth and eyes. My nose is also really dry and burns. My hands and feet are unusually hot and tingly. My legs are weak and shaky. I have burning pains down my biceps. My joints feel like they are grinding bone on bone and I have pain under my rib cage and around my back. My throat is raspy and dry and quite hoarse. I’m also breathless and wheezy. 

My consultant knows me well and increased my steroid dose. This made me feel a little less stiff but added in some sweats. I’ve been taking them for around 6 weeks and I’ve started the weaning process again. This means the symptoms are flaring once more but I can’t keep taking such large doses of steroids. They are so bad for the rest of me. My bones have been affected, as have my adrenal glands. Sometimes I wonder if I’ll always have this yoyoing relationship with steroids. The other thing is vaccinations are less effective if you’re taking large steroid doses. It’s like I’m damned if I do and damned if I don’t. 

One of the other things I find challenging is the relentless pace of emails and possible zoom meetings and conference calls and teams. I can’t keep up with it all. So much of it is crap and it can be hard to see the wood for the trees. There are some things I really want to participate in and others that I just don’t want to know about. I don’t concentrate so well since the transplant. I can be forgetful. I see a service or group meeting and think “oh that will be good” by the time it comes round to it I’ve forgotten as a load of rubbish has come in on top of what I wanted and distracted me from the thing I wanted to do in the first place. I have over 1200 emails to sort through. Sometimes I don’t open one because I know it requires me to do something and then it gets buried. By the time I then find it whatever it was telling me about is over and I’ve missed it. It’s so bloody frustrating. I only recently found out that I missed a load of good stuff and community week with my friends and colleagues in the Iona Community. 

When I was working, I had a very strong work ethic. Nothing was too much trouble and I always managed to achieve what I wanted to and then some. I could push through the tiredness of the cancer and sometimes work 14 hour days. As long as I had my days off, I could keep going. Now it’s like I have sleep incontinence. It’s hard to express the fact that I can’t even keep up with my inbox. I don’t know what the solution is either. 

It’s also hard to be on zoom so much as it almost requires more concentration. I get worried I’m going to fall asleep on camera. I also have to remember these days to put my teeth in too. I find that quite a challenge. Out of everything that’s got messed up over the years losing my front teeth is really hard. 

The final insult lately is even on the really odd occasion that I go out for a “walk” for my mental health on my mobility scooter, things are a challenge. My scooter has become unreliable and doesn’t always work. Sigh...

It’s not like me to moan and groan like this. I guess we are living in exceptional times. Most people are hoping that by the summer they can get back to normal. For some of us that may never happen. Please spare a thought for us and that a way is found to protect us too.  When you all move on, remember us who will be left behind. 

Wonky immune systems don’t go with pandemics

It’s taken me a while to harness my thoughts for this New Year blog. My mum would always ring me after midnight on New Years Eve to wish me happy New Year. She would quickly follow that up with, “thank God that years over” I would try and remind her that there were good times in the year that had gone too and that she shouldn’t wish her life away. It made no difference and the whole routine would be gone through again the following year. 

I have never wanted to close the door on a year before. I’ve always been an optimist and not just a glass half full person either. I think you can fill the cup no matter how much is in it and count your blessings. I obviously don’t take after my mother! Yet this year for the first time ever, I am happy to leave 2020 behind. I bet there are many who feel that way too. I could not have imagined that for most of this year I would not have been able to hug my grandchildren or even be in the same room as them. That I wouldn’t be able to go on trips out with my sisters and brother or daughter. That I wouldn’t be able to treat my long suffering partner to a holiday or meal out. That I wouldn’t be able to travel to Ireland to see family and friends. That I would have to wear a mask everywhere I went and even clean my online shopping with antibacterial wipes before I could put it away. My how times have changed. 

Sadly my beautiful Aunt Dorothy and her husband the lovely Uncle Richard died in the early days of this awful pandemic. Then just this week I heard the sad news that my old friend Geoff and another friend Pam had died.  Today I learned of a teacher in Lewisham and an 8 year old from Bristol dying. These unnamed individuals are indicative of the complexities of our situation. Gavin Williamson and Boris Johnson both stated this week that our schools are safe places. How can that be when they don’t even wear masks in the classrooms but only in the hallways? This teacher and child had no pre-existing illnesses according to reports. The exceptional times we are living through call for exceptional measures to be taken. I am a huge advocate for good education but not at the expense of someone’s life. All the kids are in the same boat. Put the resources into helping those that need it to access remote learning for now   Also maybe making the whole cohort repeat a year. Kids are resilient and will bounce back. The only ones I worry about are those whose homes are war zones. I know what it’s like to grow up in a house that’s not safe and find sanctuary in school or with external agencies. We need to get better at picking these kids up and safeguarding and supporting them. 

I told you about how many people I know who have died from Covid. I also know a further 2 who were hospitalised and another 4 who had it and recovered at home. We all know people and sadly many of us have not been able to attend funerals due to restrictions. My heart goes out to all who mourn, especially my cousins and friends. If I can help any of you in any way, please get in touch. Just for now know that I’m holding you in the light during this really tough time. I wish I could do more. 

Despite all that angst and sadness, I choose to live in hope. Hope that we get a fair and effective vaccination programme for the world, not just the rich countries. That scientists continue to study this awful illness and maybe find a cure. I also hope that others assume their collective responsibility. I have safe guarded my fragile health with a passion for the last 20 years of living with cancer. Now, my wonky immune system is reliant on everyone else doing the right thing. It scares me when I see protesters outside St Thomas’ hospital saying that Covid is fake news. They shout and scream about their liberty and think it’s all about them. If any of them had a child with leukaemia they would not be able to visit that vulnerable child without wearing a mask. I’m sure they would do anything if it saved the life of someone they loved. I can’t get into the mindset that would not extend the same to anyone who is vulnerable. 

Covid tentacles reach into so many aspects of life. For example I have a small skin cancer on my back that was due to be cut out this week. It’s been indefinitely postponed because the outpatient dermatology nurses and doctors have all been moved onto the medical wards to free those staff up to deal with all the extra Covid patients. My skin cancer is not serious and I am not a worrier so that is fine. Sadly though there are others who will be effected badly by these delays. My heart goes out them. 

Regular followers of mine will know I’ve been have phototherapy twice a week to treat my extremely itchy damaged skin. It was just beginning to give me a tiny bit of relief. Sadly that too has been stopped and my skin is really itchy again. It’s like electric ants crawling all over me and if I dare scratch it makes it’s 100 times worse. 

My haematology appointments continue as does my monthly IVIG which is given over a couple of hours in a drip. I can see the hard working team around me constantly looking at ways to keep us all safe and ensuring nothing gets missed haematologically.  It’s a thankless task as some can’t see beyond their own irritation. As an old timer, I see things differently. These medical teams are working flat out and they have my support and respect. 

This year, like every other, I’m sure, will be full of loving family and friends. We will just connect differently for a while longer. There will be fun and laughter and there will be trials and tribulations. Some relationships will deepen and some will wane. There will be fantastic new experiences and there will be monotony at times. Sadly there will be more deaths and there will also be some incredible survival stories. 

All of this is life, not just the good bits. Pandemics have happened before and they will happen again. We just need to get better at dealing with it. They say wise people learn from their mistakes. I think really wise people also learn from other peoples mistakes. So let’s all make a commitment to make the most of whatever life throws at us this year. We can’t change what happens to us but we can change our attitude. Today I’m sending out some love and hugs and encouragement for us to go and greet the New Year with gusto. Have a good one people. 

Here’s a prayer for the praying types too. 

Xx

O God,

make me discontented with things the way they are in the world,

and in my own life.

Make me notice the stains when people get spilled on.

Make me care about the slum child downtown, the misfit at work,

the people crammed into the mental hospital,

the men, women and youth behind bars.

Jar my complacency, expose my excuses,

get me involved in the life of my city and world.

Give me integrity once more, O God,

as we seek to be changed and transformed,

with a new understanding and awareness of our common humanity.

-- Robert Raines (adapted)

Blood cancer awareness month and 20:20 Challenge

 September is always blood cancer month. It seems apt that my body decides to give me a reminder of how fragile my health is at times. You may remember I had a couple of fairly good weeks and was able to significantly reduce some of my medication. This pleased me no end. Then I gradually started to feel crap again. 

I was in more pain than usual. My hips are awful and really ache. My wrists jolt me every now and again with a sharp pain. Same goes for my ankles and knees except they also really ache. 

Then I started to have pains in my stomach and my appetite was lessening. This soon turned into a mega vomit of undigested food. The vomiting went on and on. At one point I was being sick every 2 hours throughout the night. In the end it was just dark green bile. I felt dreadful. I couldn’t eat. I couldn’t really drink and I virtually just slept for 24 hours. 

I gradually started feeling better but still have bad muscle and joint ache. My Reynauds Syndrome has started up again. My skin is also incredibly itchy to the point that wearing shoes and socks is a challenge as they irritate my feet and make them itch. 

I would’ve never believed that an itch could be a medical problem. My partner was giving me a shoulder massage as my shoulders were hurting and I had a headache. It felt really nice at first and then all of a sudden the itches started where my back had been rubbed. It was like a tens machine had suddenly come on and was buzzing with loads of fire ants all over my back. It was AWFUL. It was an hour before we managed to calm it all down and I could sit still once more. 

I try to not scratch when I’m awake but is really hard not to. I do pinch, slap or rub the itches. I also fidget and tap. I’m normally such a still person that people often look at me sideways. I have loads of different lotions and lots of medications for this problem. When it’s having a flare, it seems nothing much helps. 

The vomiting has stopped but I still get a lot of reflux. This goes on day and night. Last night even though I was sat up, I kept waking up with acid from my stomachs in the back of my throat. It makes you cough and sometimes choke. It also tastes awful and burns. 

When you have cancer and have had such serious and extensive treatment, it seems your body is never quite the same afterwards. It’s so difficult having to adjust to living in what I feel is a 95 year olds body. I just hope that 95 year old is having fun with mine. 

My appointment with the haematologist went well in as much as most of my blood results were good. There were a couple of tests that showed something had been or was going on. My neutrophils and CRP was raised. They couldn’t, other than that, work out why I had taken so many steps backwards and had such a rough time. 

I also saw the lovely new physio. I explained to Shana that I hadn’t been as diligent with my exercises due to feeling unwell and also a possible slight groin strain. She was ace and totally supportive. I also explained my mobility scooter had broken and she said Macmillan might be able to help pay for it to be fixed. I’m not so sure as I’ve asked for help from them before and even though my partner receives the state pension and I’m on ESA we have too much coming in! Pensioners have it hard when it comes to looking after disabled partners. If you receive your pension, it means you can’t claim carers allowance even though all the care you give to your partner saves the NHS and local authority loads of money. It’s just not right. 

As well as seeing the lovely Shana I also caught up with the equally lovely Katie who is the dietician. I’d completed a food diary for it but she only received 2 of 7 pages. She was good about hearing what I was saying and put no pressure on me to push more in while I was recovering. We can see more about where I’m at next month. 

At present we have some fairly nice weather. That means I can still see friends and family because I can sit out in the garden with them. Heaven only knows how I’m gonna get through the winter. I’m thinking about getting an awning to protect from the weather. Then I can put a patio heater underneath it. Has anyone else done this? Is it expensive? 

Yesterday I had a lovely time. My older sister and brother and their partners came over and we sat outside for hours. These are 2 of the 3 siblings that I met on the TV show Secrets in my Family. This is the link and password to the show should you wish to see it. 

https://fmebrandmanagement.box.com/s/3hz6o4ge1drxg5evx2aswqskba65e2bp

 

Password: sft17

I’m so blessed to have met them and for us all to find healing from the challenges our different childhoods had. Thank you Sandra, Linda and Russell for welcoming me, Gail and Dawn into your lives. I’m so pleased I was brave enough to find you. 

One of the things that’s been nice in between my last blog and this one is that I was able to take a funeral for a family that I did another funeral for just before lockdown. It was hard not to be able to do some of the things I would normally do but it was also good to be able to be alongside them through another family bereavement. Funerals are still being kept to a limited number of people. In this case it was 20 people. This means an awful lot of people can’t come. I suspect we will end up needing to have lots of memorial services in order to give others the chance to say goodbye. 

As I sit here and write this I have an awful pain under my ribs. I also have a bad ache in my right calf. My hips are on fire. My left ankle aches. My back, arms and torso is very itchy. My mouth is so dry that my lips sometimes stick to my teeth and my tongue sticks to the roof of my mouth. My eyes are blurry and sting and are very dry. I also feel very bloated and nauseous. The list of things we have to put up with is endless. 

Sadly because of not being so great I’ve had to go back on some of the medication I got off. It’s always a rollercoaster and I never know when I’m gonna have one of these dives. It can make planning for anything in advance difficult. However it doesn’t stop me planning because it’s always good to have goals and dreams. 

In my last blog I mentioned how worried I was about my eyes. Having been to the optician after suffering a very brief incident of partial blindness, I was told by the optician that I had moderate cataracts in both eyes and dot haemorrhages at the back of my eyes. I take most things in my stride. I have dealt with my mortality and death holds no fear for me. I’m lucky that I’m not often stressed and I’m not a worrier. When it comes to my eyes though, I am more cautious. The reason for this is I only have one eye that works. My left eye sees light and dark but even the large letters on the sight test are now wiggly blurred lines that I can’t make out. 

I asked my GP if I could go to Moorfields. The medic that phoned me about it was not someone I knew. She questioned me and was quite abrupt, initially she was saying I didn’t need a referral based on what the optician had said. I told her about the episode of temporary blindness and she said “you didn’t tell me that” to which I replied “you didn’t ask”  I’m so used to dealing with medics who know me well and know I wouldn’t raise something unless it was a real issue. In fact I’m more likely to put up with it for too long before I mention it. This woman wasn’t very empathetic and seemed a bit miffed at having to do the referral. It’s a shame but maybe she was just having a bad day. She did refer me and Moorfields were great when I finally got to the right place. 

When I arrived I went into the main building, then after queuing to get in, I was sent to another building over the road. After that I was sent back to the original building and had to queue all over again. When I got to the front of the queue I was told I couldn’t come on till 3pm as the letter said my appointment was 3,30pm. I explained I had received a call from the doctor asking me to come at 1pm. The man on the door said he had to go by the letter and wouldn’t listen to me or my partner. In the end another member of staff let us in. Two things are wrong here. Firstly no one should be sent to the wrong place, yet alone someone with a mobility problem. Secondly staff should listen to what the patient says to them. Why would anyone turn up 2.5 hrs early for an appointment? This just shows that not everyone has caught up to the fact that patients have a voice now. It’s also why we need patient advocacy for those who are not as assertive as I am and need some help navigating a confusing system. 

When I got to see the doctor she was lovely and reassuring. She explained the cataracts would need doing but not just yet. I said that’s what concerned me because I know it’s a straightforward procedure but with my wonky immune system, the chance of infection is higher. She said not to worry and they would take good care of me when the time came. She also said that whatever the optician had seen was now gone and the haemorrhages had been reabsorbed. I was relieved by this but also slightly perturbed. If I could afford to pay for it I could have cataracts surgery now. Instead the NHS says I have to wait until the symptoms start getting in the way of my quality of life. How annoying is that! I don’t do private medicine. I think it’s wrong that if you can afford it you get treated ahead of those who aren’t so fortunate. It’s just not right. Oh well, no point having principles of they don’t bite your bum from time to time. 

Thanks everyone for continuing to read about my exploits and recovery from cancer and a transplant and it’s complications. If you have any questions or comments for me I will happily answer. I appreciate all your messages and virtual support. It helps to keep me as sane and cheerful as I am. 

I also remember all the others I have journeyed with who sadly never made it. As it’s blood cancer awareness month, I would like to dedicate this blog to all those brave souls. 

Music is the language of the emotions

 Life in our strange new world continues apace. I’ve been doing alright on one level. I’m still managing to stay off some of the most toxic of the medications that I’ve been taking for years. My consultant agrees that stopping some of the tablets has been better for me than she anticipated. Let’s hope it continues that way.

I had a very strange situation recently. I had not long been out of bed when all of a sudden it seemed like I had stared at a bright light. I couldn’t see properly. I looked in the mirror and all I saw was from my eyebrows and above. I couldn’t see my face or shoulders even though I should have been able to. I only really have vision in one eye having been born with a lazy eye. Not being able to see really freaked me out. It didn’t last long and went as soon as it had arrived but it left me very disquieted. As a result I made an opticians appointment. 

I saw a very professional and thorough young woman. At one point she kept looking in my eye and going back to the computer. She then asked me if I was under the hospital for my eyes. I explained that due to the transplant I had very dry eyes probably as a result of GvHD and was given drops from the ophthalmologist to treat this. She then told me I had moderate cataracts in both eyes and I also had dot haemorrhages in the back of my eyes. She said this would need further investigation. It seems this type of haemorrhage is often seen in diabetics and in people with high blood pressure. I have neither of these. The mystery deepens. 

As you can imagine, having only one working eye, I am anxious about needing anything done. I know the cataracts will need doing but it scares me and I’m not easily perturbed. It’s rare that there are complications from cataract surgery but they do occasionally happen. The optician said to me that it wouldn’t matter what lens was put in my glasses, they wouldn’t be able to improve things. I know that eventually I won’t be able to see well enough to drive or read. It would be good to get it sorted before that point. I think I might ask for a specialist referral o Moorfields as they have such a brilliant national and international reputation. 

Life with Covid restrictions continues to be hard. According to government guidelines, if I was well enough, I could return to work. According to my consultant I should continue to be cautious and shield. I know who talks most sense, so I’m following my consultants advice. Myself and my long suffering partner continue to entertain out family and close friends occasionally but only in the garden. I’ve no idea what we will do once it’s too cold to be outside. Maybe we will invest in a patio heater. 

I had been feeling a little better but the last week I’ve felt tired and washed out again. You have to keep taking the rough with the smoothie I guess. Let’s hope it’s only another blip. 

One lovely thing I had the honour of doing was to help my newly found brother and sister-in-law renew their wedding vows after an amazing 40 years of marriage. They did this in front of their nearest and dearest only instead of the lavish party they had planned due to Covid. I was so happy to play a small part in making the day as special as possible. 

This week my eldest grandson gets his GCSE results. I know he will do well. My heart goes out to all those young people who have not had an easy time of it and are anxious about their results in this weird year. Let’s make sure we surround them all with love and light. 

Many of you may be aware that I record an audio diary for BBC Radio Kent that is broadcast every Sunday morning. I am about to record a segment for them which explains how I experienced my first sense of vocation. I was a young 15 year old and had been taken on holiday by my church to a place called Lee Abbey. During one of my visits there I was stopped in my tracks by a beautiful duet version of the hymn When I survey The Wondrous Cross. It came from a musical called Saints Alive and was written by a man called Roger Jones. The duet is hauntingly beautiful with fantastic harmonies. I went on to sing it in many concerts. The last verse is the powerful bit that got me: 

Love so amazing so divine

Demands my soul, my life, my all

Demands my soul, my life, my all. 

What I realised, as an abused and troubled teenager was that if I lived my life in that divine love, it would take my soul, my life and my all but I would be happy. I knew in that moment that God wanted me to work for her. Trying to explain a sense of calling is a hard thing. It’s like an inner voice that goes on and on and because I didn’t listen so well that inner voice went on for 20 years until on another holiday I had another profound experience. This time I was on the island of Iona in the Inner Hebrides of Scotland. I was in my 30’s and as far as the world was concerned I had made it. I had a great partner, a beautiful home and a good job. Despite all of this I was disquieted inside me. As I wandered around Iona on a pilgrimage, I realised that d3spite all the material wealth I had  and despite all the loving relationships I was not going to be happy until I put myself forward for possible selection for ordination training in the CofE. I remember saying to God as I wandered around “Ok mate, I’ll do it, just to prove you are joking me because how can you want this unorthodox street urchin as a priest” I was really shocked when I got through the process and remember when I was ordained closing my eyes at the laying on of hands and feeling a deep peace that I was finally where I was supposed to be. 

Here’s the YouTube link for that beautiful duet if you’re interested. 

https://youtu.be/A_rjHN_DAj8

In order to include the song in my blog and audio diary, I looked up Roger the composer to make sure I had his permission to use the track. I was pleased that he responded to my email very promptly and we had a lovely chat on the phone. He is very happy for me to use his words and music. 

Music and the love of God expressed through the kindness of other people helped this street urchin survive the difficult start in life I had. In fact they still do. I always say I stand at the point where the love of God meets the mess of the world. That would not be possible without living through and learning from all of the experiences I have had to date. That’s why I firmly believe that your present circumstances don’t determine where you can go, they merely determine where you start. Where you finish is up to you. 

Fighting cancer & covid

Hello everyone. I’m so sorry it’s been a while since I’ve put out a vlog/blog. I’ve been feeling crap! Well that’s not quite accurate. I had a couple of days, and I do mean just 2, where I felt the best I had in years and then the walls came tumbling down and I plunged backwards once more. I had a headache from hell. It was like a cactus and as growing out of my head. Then I had to dash to the loo one night and sit down very quickly. While I was “seated” I knew I was also going to throw up. I had a slight temp and I felt dreadful. Normally when I feel bad I just sit or lay very still. That makes things a bit more bearable. This time that strategy didn’t work. I was like death warmed up. I would have happily taken a large dose of sleeping tablets to knock me out till whatever was going on had worked it’s way out of my system. This intense feeling of being that unwell lasted a week. Then I gradually started feeling better but only back to my base level which is not brilliant. There has not been any further sign of those 2 good days. Sigh! It’s like torture. It’s almost like I had a small taste of my old life dangled in front of me, then it was gone. It seem cruel to me but it’s also something to aim for and maybe next time I’ll have 4 days. I just hope and pray one day I might get my old life back for good. One of the things I’ve been thinking about lately is the fuss that some people are making about wearing a mask. Please don’t think that your civil liberties are more important than my life. That’s what is really being said because if I got Covid I would likely die and so would many others like me. The problem is we are invisible amongst you. You can’t tell who the vulnerable people are around you. Please don’t put us at risk. No one would question visiting a baby ward and having to wear a mask. Well those of us with blood cancer or who have had bone marrow transplants have the immune systems of babies. We need to be protected. Please take your collective responsibility and help us carry on living. I hope you like this vlog which is dedicated to Claudia, Dave, Jean, Evie, Nicki and all fighting to stay alive during this tough time. Stay safe and take care Xx https://youtu.be/T_OOB7_7wLg