Continued irritations

 Hello everyone. I hope your week has been ok and that you have found some light and refreshment this weekend. I’ve had a mixed week. I had my usual monthly IVIG (intravenous immunoglobulin) infusion followed by a clinic appointment on Tuesday. Unusually I couldn’t make my regular week so the lovely reception staff booked me in a week earlier. Unknown to them and to me this caused a problem with the IVIG. There hadn’t been enough of a gap so pharmacy wouldn’t supply the medication. As a rule my wonderful team try to cut down how often I have to attend the hospital. We all try to co-ordinate things so that I may have several appointments in the same day. Sadly this didn’t work on that occasion and I’m going to have to go back next week for the infusion. 

Despite this irritation, I still managed to get a few things sorted out. When I arrived at 11.30am I knew I needed some medications. I asked the staff in the supportive therapy unit and they said it may be better to ask the consultant as one of the drugs they couldn’t prescribe. I knew this would delay things so I spotted the Clinical Nurse Specialist (CNS) and she said she would get it sorted. I saw Victoria, my ace consultant. We talked about tying all the things together that are going on. My neck scan continues to show some narrowing, this could account for the numbness and pins and needles in my hands and arms. Victoria is going to follow up with the neurologist. I’m still slowly coming down on the steroids. Victoria wants me to do this final bit at a snails pace and only come down by 1mg maybe once a month. I’m certainly getting a lots more symptoms now that the higher dose steroids were masking. I get awful burning pains down my arms. My feet have been getting more and more painful. I now can’t easily put my right foot properly on the ground. It’s giving me a very strange gait when I walk. My guts are playing up and my skin is getting itchier. My reflux has returned with a vengeance. It’s like the muscle keeping stuff in my stomach doesn’t work and liquid part digested food and acid roll into my throat and mouth while I’m sleeping. It wakes me up sometimes with me absolutely choking and coughing my guts up. I have to sleep sitting up again. 

Fortunately things are slowly getting back to normal in the hospital and they are catching up in other departments with all the procedures that have been on the back burner during the crisis of the pandemic. One of those departments is endoscopy. I’ve been waiting for a deferred procedure for over a year. A really friendly nurse called Krystal phoned me from endoscopy as I was getting ready to go to my appointment at Kings. When I told her this she asked if I would pop by endoscopy and pick up my preparation for the procedure. I mentioned to Krystal that it would be a really good idea if I was able to talk to the anaesthetist as the last time they pulled the plug just as I was about to be wheeled into theatre. They did this because I’m such a complex case. It was for my best interest but was not pleasant because I’d had bowel prep for the last two days and felt awful. As soon as my clinic appointment had finished I dashed around to endoscopy, getting there about 3.45pm. Krystal was so lovely and really helpful. She knew how long I’d been at the hospital and offered to get me a snack. These small gestures make such a difference and create a much more humane interaction. 

I then saw two really nice anaesthetists. They were friendly, professional and very thorough. The most important thing is they listened. They heard me when I said that I had come round while still anaesthetised last time and it was awful to not be able to move or blink or communicate that I could hear them. They heard me when I said that I may be small but I take so much medication that normal levels of meds just don’t touch me anymore. They were very committed to making things as smooth as possible while keeping me safe to enable the various things I need done to be achieved all in one go. 

Once they had finished with me in endoscopy, I went back to haematology to collect my medications. I got there just before 5pm. The medication wasn’t back from pharmacy. It’s annoying when you’ve been there all day and you just want to get home. They rang the pharmacy who told them it would be 25 minutes. They sent a young nurse to collect for me. She came back at nearly 6.30pm empty handed. Her shift had finished and she was already late going home. The nurse in charge of haematology rang pharmacy and they agreed to courier me the medication the next day. The next day comes and I hear nothing. I decided to ring pharmacy and check what was happening as it was now past lunchtime. When I finally got through, I was told that the medicines had been dispatched and collected by haematology the night before. I said I knew that wasn’t the case as I hadn’t left haematology until 7pm and they certainly were not. there then. Pharmacy was insistent that was the case and that haematology could courier them to me, so  I had to ring haematology. When I rang them they of course said this wasn’t the case so I contacted my CNS who managed to sort it out for me. Within an hour pharmacy rang to say they were dispatching my medicines and it would be with me later that day. The meds were still with them. What a palaver!

I can easily forgive the IVIG mix up. It was a genuine mistake and it doesn’t usually happen and I know we have all learned from it. I am sad to say that I have not so much faith in pharmacy. They often make mistakes and repeat those mistakes over and over again. It’s bloody frustrating and cause angst and a lot of hanging around. If my prescription had been dispensed in a timely fashion it would have saved the NHS the money of needing to get a dispatch rider out to my address. I love the NHS and I’m extremely grateful for the number of times it’s saved my life. For the professional and empathetic way my ongoing care is delivered. For the incredibly talented staff who are creative in looking at my complex issues. However I do think bits of it need to be improved. I’m always up for helping with that. I don’t think you can educate if you alienate. I always try to give constructive criticism. Let’s hope that pharmacy learns from all this and makes some improvements. 

As for me I am gritting my teeth against the pain I’m in just now. I’ve got my surgery on 6 July. This will be to remove the PEGJ, to remove a polyps, to implant a micro chip to measure how much acid my stomach is producing and to have a good look top and bottom to see how things are. 

At least I’ve got the football to keep me company. I’ve been watching every match of #euro2020. One of the weird things about me is I love football. I used to play for Millwall Lionesses and Charlton. Whenever I go to visit a country, I always buy a football shirt representing the national team. Then when the Euros or World Cup is on I can wear a different shirt depending on whose playing. The photos contain a selection of some. I love having a playful and inclusive spirit. It’s also great to have a distraction while everything is hurting so much. Let’s hope it all settles soon. Meanwhile I hope you are as well as you can be and that you have some fun and light and love to keep you going through the challenges.

Life’s irritations

 Sometimes really irritating things happen that you don’t invite into your life and have no control over, and yet you have to deal with them. It’s only by dealing with them that the irritation goes. 

Yesterday I received 4 items in the post. I opened the first one and it was a letter from rheumatology saying I had an appointment on 8 June at 1pm. As the clerk had rung me a few days ago and told me this I wasn’t surprised and already had it in my diary. It’s important to keep on top of these appointments and make sure they don’t clash. I always put them into the phone calendar so I know what’s coming up otherwise it’s hard to keep track. 

The next letter was from rheumatology telling me I had an appointment on 8 June at 3pm!? What on earth. I was very perplexed and you are not seeing things. It is two appointments on the same day at different times. I know I need regular monitoring but not every two hours. 

The next letter was from cardiology. It said that as I failed to turn up for my appointment on 26 May for a 24 hour ECG, I had been taken off the list and would not be offered another appointment. I knew nothing about this. I don’t even know who ordered it. I’ve already previously had a 24 hour ECG so I would have queried the reason behind it had I received anything asking me to come in for this test. I would never not turn up for a hospital appointment. I know it costs the NHS and I do t want to waste time or money. If I can’t make a specific appointment I always ring. 

The final item was a card from the post office telling me I had been sent something in the post but there wasn’t enough postage paid. If I paid £1.50 I could retrieve the item. 

Oh my days. I was so frustrated. As it was the weekend I could do nothing about any of it which added to the annoyance. Also it’s a bank holiday weekend so it will be Tuesday before I can sort it out. It’s really bloody aggravating. But that’s life. As I always tell people, life is only 10% of what happens to you. The other 90% is how you deal with it. 

Sadly in my life and my line of work I come across many people who experience minor irritations like above or more major irritations but they don’t deal with them. Instead they let them slop around inside themselves and it makes them brittle people. They don’t let any of it out in any productive way except to be unkind and awkward to the people around them. It’s so sad. I’ve known and know so many people who keep everyone at arms length and never reach their potential. I sometimes wish I had a magic wand that could make these people feel safe and loved enough to be honest and let some of the pain out. Sadly I don’t have a magic wand so all I can do is model good practice and show a different way of doing things.  Hence me blogging about the minor irritations of my post bag as well as some of the trauma and difficulties of living with cancer and the effects of the treatment. 

My sister Trish was a point in question. All of us suffered in childhood from poor choices made by our parents. That pain got locked into Tricia. In order to cope with how bad she was feeling, she started to self medicate with alcohol. What she needed was to talk about the pain. What she did was try and squash those difficult feelings. The problem is these feelings don’t go away they are just temporarily dampened. Then they come back again and you need more and more alcohol to push them down. 

Sadly Trish died from her alcoholism in her 40s. By then she was a shadow of her former beautiful self. She was pitiful and it was so hard to witness. I had only recently been ordained. Tricia’s funeral was the first I took as an ordained person. It was an honour and privilege to do so for my grieving family but it was tough. 

My plea to you all is to take a risk and be brave. If you have pain locked inside you, whether it’s caused by your illness and fears for the future of trauma from the treatments. Whether it’s to do with a failed marriage, a bullying boss, a difficult childhood. Whatever the cause, please love and value yourselves enough to do the work that will releases you from the chains that bind you to the past. It’s so important to look after our emotional and spiritual self not just our physical bits and pieces. 

I’ve been busy for a few days with stuff at home. My lovely sisters Gail and Dawn and their husbands have been helping me which is fantastic. Despite the busy time I was all set up to do a blog on Friday as it was World Blood Cancer Day. Unfortunately another irritation came my way. There was a problem with my freezer and unnoticed it had defrosted and all the contents were spoiled. It was a full freezer too. Grrrr! It meant I had to empty it all, clean it all out and take the contents to the tip. I couldn’t change the fact that it had happened so I just had to suck it up. Sadly it meant I missed a zoom meeting with MDS UK as well as doing a blog. That’s life. All I could do was shrug my shoulders and get on with it.  

Fortunately some nice things have happened too. The sun is shining and I’ve been able to sit out in the garden with some of the family at different times. 

Rose, one of the readers of this blog contacted me recently and said I’m always talking about my grandchildren but what about my children. My beautiful daughter Annie is mum to my 4 grandkids. I couldn’t be more proud of the amazing woman and mother she has become. Rose I’ve included a picture of us especially for you. I hope all has gone well this week with your surgery. Annie has been going through a bit of tough time so it was lovely to be able to spend some time with her in the garden and give some socially distanced support. It’s so tough not to hold those you love! It will come I’m sure but for now my partner and daughter carry the anxiety of what may happen should I become ill with covid. As a result they are very cautious with me. Annie will not even walk through the house to the garden without putting a mask on. I’m blessed to have so many people that love me. That far outweighs all the irritations. 

To round up, my latest news is that I am soon to have my PEG J removed. It will be the first time in 5 years that I won’t have some kind of tube hanging out of my body. I can’t wait. I had a chat with the lovely gastro doctor during the week. He told me that my recent barium swallow test had shown that there is an anomaly in the way my oesophagus empties into my stomach. When he takes the PEG out and deals with another couple of bits he is going to insert a tiny microchip that he will attach to the bottom of my oesophagus. That will be connected to a receiver that I will wear for 4 days which will measure the amount of acid going into my food pipe. After I put the phone down I started to laugh. We have the nutty antivaxxers that won’t have the jab for fear of Bill Gates controlling them via a hidden injected microchip and me willingly having a microchip implanted. It must be awful for those people to live in such fear. 

Wherever you are in the world I hope the sun is shining on you and I also hope that despite the physical cost of being ill you also pay attention to the emotional cost and find a way of letting some of the difficult stuff out and let more light in. Be brave and just go for it. You’ve got nothing to lose but so much to gain. 

(The black and white photo is Tricia, the other is in the dark glasses is Annie and the other is me teaching my daughter to ride her bike. It was when I was fit an healthy and still playing football as you can see Lol) 

#worldbloodcancerday

3 lives in 1

The gorgeous fella in the photo was my friend Bert. I met him and his wife Ros when I was 12. They were always so lovely to me. Bert was a very fit bloke and soon realised I was mad about sport too. He invited me to join him and some friends for their Saturday morning jogs. We use to meet up at Oxleas Woods and for a warm up would do a lap of the meadow while chucking a rugby ball at each other that Bert called “the pill”. After this we would then head off into the woods. Bert never went the same way twice. Back in those days there was no such thing as an outside gym. This didn’t stop Bert though. He would find low hung branches to do pull ups on, fallen trees to practice our balance, ditches to jump and stumps to do step ups on. I so looked forward to my Saturday mornings. 

Sadly Bert died nearly 2 years ago. He lived to a ripe old age probably because he had been so fit all his life. Another thing we had in common was our love of motorbikes. He would sometimes take me on the back of his. He would explain about belt drives and other such stuff that sounded good but went right over my head. 

Today I went out on my own to test my new mobility scooter in a more demanding setting. I decided to beat the pathways up in Oxleas Woods once more. It was such a lovely day, as you can see from the photos. I thought of Bert as I was wandering and I wondered how many of the trees remembered me. I came to one bit where there are what maybe railway sleepers over a bit of a ditch. In an instant I was taken back to the number of times I’d run over them in the past. It’s good sometimes to have a trip down memory lane and honour those who have been important to us and touched and enriched our lives. 

I’m sorry I’ve not been so good a blogging or staying in touch lately. It’s been tough on many levels. Physically I’ve been feeling rubbish because I’m struggling to get to the lowest dose I can manage of my steroids. I know I’ll never be totally off them now as my adrenals have packed up, but it would be good to take the bare minimum. Many users of prednisalone call them “the devils tick tacks” They can be really effective to help with some serious problems but then they also cause many serious problems. It’s all a balancing act. 

On top of physically feeling rough, I’ve also struggled with my motivation. As I said in my last blog, I’ve lost my mojo a bit. As it’s mental health awareness week I thought it would be good to blog about it. 

I’ve not had the easiest of lives. I left home around the age of 15. If the police found me and took me back, I’d just run away again. I had learnt that there was more to life than the sum of my experiences and I wanted more. I wanted life in all its abundance. To get that great life I had to endure sleeping in the back of cars at times, as well as sofa surfing. At 17 I was fortunate to get my first home. It was a really grotty bed sit that had mice and cockroaches. To me it was palatial. 

When I was 18 I was really lucky to get my first proper flat. Before then I couldn’t legally sign a tenancy agreement. This beautiful flat was on the old Ferrier Estate in Kidbrook. I was told not to leave my little scooter downstairs if I wanted it still to be there the next day. I would take it up to the flat every night. The first night I stayed there, I was woken by an almighty crash. I went and looked over the balcony to discover a car had ram raided the supermarket in Teleman Square. Despite the roughness of the neighbourhood, I loved it there. 

I didn’t have any qualifications to talk of due to my chaotic home life so I did a Manpower Services Course at Woolwich College because it paid me the amazing sum of £25 a week! As a result of that I started volunteering on what was then called a geriatric ward at the Brook Hospital. While I was there the nurses spotted something in me that I hadn’t yet spotted. They thought I’d make a good nurse. I said I couldn’t do it as I had no O levels. They said they would recommend me. They did this and was accepted to train within the then Greenwich and Bexley Health Authority. A week before my training was due to start I did a newspaper article about young people and the problem of solvent abuse. I was talking from experience as I’d abused glue and gas for 2 years but stopped when I left home as I didn’t need that escapism any more. 

The school of nursing were not happy with my revelations and said I was no longer suitable to be a nurse. I fought them on this and after an in-depth medical and psychological review they then said I could start 6 months later. 

As my life developed I still had challenges and trials and tribulations but I also had some stability and it helped me  stay on an even keel. 

Sadly I had to give up nursing due to a back injury. It didn’t stop me having good jobs though. I worked in various settings including a mortuary, a mental health hostel, a refuge and ended up managing a large Women’s Centre. Then I started my training for the priesthood and for the last year of that I gave up having such a responsible job to work for St John’s Ambulance as one of their commercial trainers. Once I was ordained I worked as a priest in various parish settings as well as being a hospital and finally school chaplain. Not bad for a kid from Woolwich with no qualifications eh? 

I guess all these challenges and experiences helped build a deep resilience in me. No matter what the knock back, I’d take it on the chin and carry on. That was my attitude once I got over the shock of dealing with my blood cancer diagnosis too. It’s also helped me beat numerous sepsis episodes and cope with living a very different life with my physical disabilities that have arisen as a result of living 20 years with cancer and the effects of treatment. 

Coming now to more recent events I think I’ve coped admirably with the restrictions of the pandemic. Due to the fact that I’ve had a stem cell transplant I’m considered clinically extremely vulnerable. It’s been hard not doing things and really horrible not being able to hug anyone, especially my grandkids. For over a year I’ve just got on with it. So why now as things are looking more hopeful for a slow return to normal do I find myself struggling? I’ve had little motivation and very low energy. 

I suspect that it’s in part due to the continued isolation. I’m very much a people person. I get my energy from being with family and friends and being engaged with the world. I love doing new things and finding new challenges I can complete.  I also think that not being able to hug people is hard for me. Another issue is the lack of activity. The main culprit though for my low motivation and energy is that while most of the UK is looking forward to being able to meet up with more people and to eat out or go for a drink, I am still being told to be extremely cautious. The problem is that vaccines don’t work very well in blood cancer or transplant patients. Some trials estimate we might have a 10% response rate as opposed to the 90% that most people get. I’ve been happy to grit my teeth to this point but feel the relentless nature of this situation is now getting a bit much. It’s so hard having no end date and having to rely on the good weather in order to be able to see anyone out in the garden. 

My mood is slowly lifting but I don’t think I’m out of the woods yet. I’m going to have to guard  against encroaching negativity. I will have to make sure I have some nice treats to look forward to with the better weather. I will have to visit places I haven’t been and go wandering on my scooter. I will have to see if I can dream up another project to keep me occupied. Sometimes I feel like my brain is going to mush because of the lack of stimulation. 

One of the things that people learn about me as they get to know me better is that if I’m quiet, there’s usually a problem that I’m chewing over. That’s why I’ve been quite absent from social media over the last few months.  Many people pour out their pain and angst as a way to understand it. I’m different in that I have to understand it before I pour it out. That doesn’t mean I don’t need my friends. In some respects when I’m quiet and withdrawn I need distractions even more. 

This week is Mental Health Awareness Week. Today is also National Nurses Day. I’ve written this blog to encourage everyone to embrace their mental health. It’s ok not be ok. I also post to honour the nurse in me and what nursing gave me as well as say a heartfelt thanks to all the nurses who have helped me through the last 20 years. Also to recognise the amazing people I’ve worked with over the years in my various roles with the NHS. Thank you to all of you for what you’ve done as well as what you will do. You really do make a difference. 

Nurses Day is based on Florence Nightingale’s anniversary.

She was known as the lady with the lamp. Many of you know that I like light in the darkness imagery. I’d like to finish with my favourite quote.  The bloke who first said it was a priest who was dying of cancer. “I have learned that suffering when permeated by love has a transforming effect. When I light a candle at midnight, I say to the darkness, I beg to differ” 

Lost mojo

It’s been a while since I’ve written a blog. It’s a bit like I’ve lost my mojo. It’s unusual for me. If I’m feeling off, there’s always a cause and I’m usually aware of what it is. This time I can’t put my finger on it. It’s just like I’ve run out of steam and can’t be bothered. I don’t feel depressed or down though, it’s more a lack of stimulation which is creating low energy. For those of you who have worked in schools, it’s like those young people who are intelligent but really lack any aspirations. Maybe I need a kick up the bum! When dealing with these kids, I would try and captivate them and enthuse them about things so their horizons would be broadened until they found something that really inspired them. 

I’ve been lucky in my life to have so many things that have inspired me and pushed me beyond what I thought was possible. Sometimes I feel like I’ve lived 3 lifetimes in 1. These days the biggest challenge is trying to work out which box set to view on the TV and what else can be added to the menu of relentless meals at home. I shall just have to go with it and keep hold of the philosophy that this too shall pass. 

Physically things on one level remain stable but on another are hard going. The stable bit is my blood counts have been consistently good for a while. There’s always a few things that are not quite right but nothing concerning at all. The GvHD (graft verses host disease) can still be problematic. My hands are like sand paper despite constant moisturising. Since I’ve been taking the ruxolitanib the itching is not quite as severe, so that’s really good. My mouth and eyes continue to be very dry. My eyes are often blurry. I need an eye test to see how far the cataracts have developed. My mouth can be really sore. I have a very painful lesion on my tongue. It’s like an open sore and has been there for around 2 months. My new denture plate is better than the last one and stays in place more securely but I hate it. It heightens the dryness of my mouth and gives me a bit of a speech impediment. Eating with the plate in place is challenging and I really don’t like it. I’m sure it all adds to the nausea. I wish I could afford implants. The impact on my teeth is one of the hardest aspects of this illness and treatment. 

My joints and muscles continue to complain. I have lots of pain ranging from a dull ache to burning pain and finally a really sharp take your breath away shooting pain. My muscles continue to be really weak too. I’m sure that weakness in my muscles contributes to my breathlessness. You need good enough muscles in your chest to support your breathing. It makes sense that if my hands, arms and legs have weakened muscles, my chest will be the same. It makes sense to me anyway. 

One of the really strange things that I’ve noticed is that my finger nails have all changed shape. I always had a nice curve to my nails so if you were looking across them, you’d see semi-circles. Now they are all flat. They also peel and break as well as having dips and ridges. On top of this, and as a consequence of my dry hands, I get splits at the sides of my finger nails. These are incredible painful for a few days until they start healing. It’s amazing that your health can be so rubbish with fairly major things to worry about and yet it’s the sore tongue and split fingers that cause most pain. Weird eh? 

Despite me losing my mojo, life continues to progress. This week I had my 2nd dose of the covid vaccine. I really hope the haematology team are able to assess if I have any immunity when I go for my next lot of treatment. I think that continuous shielding for over a year is probably the main cause of my lacking enthusiasm. To have to continue to live in that very cautious way is not a happy prospect. I need my freedom back as, I know, so many of you do too. Most people would be excited about having had both jabs but for me there is just this relentless curtailing of my normal activities. 

At least it’s easier now that the weather is a bit better. Finally  I can now see people out in the garden as it’s warm enough to sit and chat. I’ve had a lovely weekend with a trip to my sister Gail’s garden on Saturday and then a nice time in my daughter Annie’s garden with the kids and grandkids on Sunday. It was great to spend time with the grandkids. I miss them so much. The boys are rapidly turning into young men. All their voices have broken now and they are changing shape and having another growth spurt. My granddaughter is 10 going on 25. Lol. She is experimenting with her make up and is quite good at it. She’s only allowed to do this when she’s at home though. I do miss giving them hugs and kisses. 

I had the privilege this week of taking my sisters mother-in-laws funeral. I’ve know Deirdre for over 20 years ever since my sister met her husband. She was a lovely woman and really interested in what was going on in the world. She was inclusive and kind and always put some money in a card for my grandchildren each Christmas. My lovely niece Jessica was her only grandchild. She had a wonderful relationship with her and they played for hours when Jessie was little and went there after school. 

I’ve missed doing funerals, so doing this one was even more special. I found it really challenging when Jessie got upset doing her reading not to be able to give her a big hug. She did so well and managed to compose herself and finish the reading with my gentle hand on her back. Deirdre would have been really proud of her. 

This week we have also had the spectacle of Prince Phillips funeral. I’ve listened to many people phoning radio shows and saying how awful it was to see the Queen sat alone. Many were angry and didn’t think it was right. It made me sad as this situation has been going on since the pandemic started. Many ordinary folk have gone through the same or even worse than the Queen. So many people have not been able to attend funerals due to restrictions on numbers. Many mourners have been left to sit alone and cry. It breaks my heart to see these things. I’m a naturally tactile person. It goes against the grain not to reach out to comfort someone who is weeping. I’m firmly of the belief that there will be many people greatly affected by grief issues. So many haven’t been able to say goodbye properly. I think there will be a need for lots of memorial services to provide a structure for people to be included in saying goodbye. I will happily provide that service for people because I know that grief is a complex process and honouring peoples loved ones is a vital part of healing and saying goodbye. I really hope I can get back to taking more inclusive funerals soon. 

One thing that slightly concerns me is that I haven’t seen a specialist since I’ve had the TIA (mini stroke) I’m sure the pandemic is getting in the way of follow up. Also it doesn’t help to have been seen for that in a different hospital. When I had my last haematology appointment, the thorough and lovely consultant Victoria said she would speak to the neurologists at Kings. I haven’t heard anything yet but hopefully I will soon. It would be good to be given some reassurance. 

Another casualty of the pandemic is that I still have my PEG (feeding tube) in situ. I really want it taken out. Endoscopy is one of the departments that has a huge backlog due to covid restrictions. Victoria and Katie the dietician have agreed it can be removed. Now it’s just a waiting game. It will be good to have another hole in my body closed and to get rid of what I refer to as my pipe! 

I suppose when you look at all the things that have been chipped away from me over the last 4 years since the transplant, it’s no wonder my get up and go has got up and gone. I’ve not been to church, I can’t sing with my choir, I can’t hug and kiss my family and especially my grandkids, I can’t shop leisurely for myself, my partner can’t come with me to the various hospital appointments, I can’t travel abroad or go on holiday, I can’t work. The list is endless of how my disability has robbed me of so much way before the pandemic came and made it so much worse. 

I do count my blessings still and know that it’s not all doom and gloom. Since the transplant I’ve also met and bonded with 2 new sisters and a brother and their families. I’ve met many amazing people virtually around the world through our MDS forums. I’ve been blown away by the kindness of strangers in their responses to my audio diary on BBC Radio Kent. Also friends have warmed the cockles of my heart in their generosity of making contact and sending bits and pieces. I love working with the MDS UK committee. I’ve done some really interesting work with some Pharma companies and met some lovely and committed people.  I’ve also been part of research and reviews into new ways of working. I’ve met neighbours who have made me lovely cakes and checked if I need things in shops etc. I’ve met some wonderful patient advocates and charities doing fantastic work. I say this to show I’m aware of all the goodness around me and how much love surrounds me. Sadly sometimes it’s not enough to give you that spark. Let’s hope it’s not too long before that spark returns and I become creative again and look for more ways to get up to mischief. 

Scary times

Life always has a way of catching you by surprise. Regular readers of my blog may remember me having a weird visual disturbance where I could only see the bottom of my field of vision, the top had just disappeared. It was scary as I rely on one eye as my left one is a lazy eye and ineffective. 

I was checked over by Moorfields who didn’t find anything much apart from the cataracts caused by the steroids. 

Then the same thing happened again a couple of weeks ago but it was my left eye this time so I couldn’t really see much anyway. 

My fantastic team at Kings have been carrying out further tests. I continue to be closely and regularly monitored. 

Monday this week was a significant day. Not only was it International Women’s Day, it was also the day I was having some work carried out in London. As I have to continue to shield that meant going to Maidstone for the week. All was going well and the car was being loaded and I was looking for some lost keys. I tried to speak to my partner and no words came out. I completely lost the ability to speak. I tried several times but to no avail. I knew what I wanted to say but just couldn’t get the words out. Then I noticed my arm was going numb and tingly and my legs felt heavy and weak. I knew I needed to be seen. By now my speech had come back. I rang Kings and they said they didn’t have the facilities to deal with this in outpatients and I should go to A&E. 

I went to my local hospital Queen Elisabeth. A&E was a nightmare. There was no social distancing. At one point a member of the nursing team leant across me as I sat talking to the person on the door while I was filing in their form. Once I got into the main waiting area, people was sitting in rows and again not distancing from each other. Many were not wearing masks. Despite it being explained that I was shielding and very vulnerable, I was told there was no where else I could wait. I said what about the corridor and I asked for a chair. I was told I could stand there but not have a chair. It was awful! The person who was the best was the young woman on reception. The medical staff were just defensive and didn’t get it. 

Fortunately I was called through quite quickly. I saw a lovely doctor. She assessed me then went and spoke to her senior. They decided I needed to be moved to The Princess Royal’s stroke unit. They said they would book transport. Next thing, within minutes, an ambulance crew were with me. The brought a trolly. I told them I could walk but they said I needed to be on the trolley. The crew were lovely. They got me in the ambulance and explained they needed to put the lights and sirens on and not to worry. I’ve been through too much to worry and I did think it was a bit over the top. 

When I got there it was like a scene from 24hrs in A&E. There were lots of people around me. I was quickly assessed and then taken for a head CT and chest X-ray. I had a nurse with a backpack with me the whole time and was kept on a monitor. I felt much safer than I did a the QE. Social distancing and good prevention was in evidence. 

The upshot of it all is they diagnosed a TIA which is a mini stroke. I certainly didn’t see that coming. The nice stroke doctor I saw explain that he was able to access my test results and the special vascular scan of my neck had shown some problems. He liaised with the team at Kings and checked I’d be ok with the anti platelet medicine Clopidogrel. They were going to admit me because of my complex medical history. I asked if they’d normally admit for a TIA and he said no. I said I’d rather go home and have the other tests as an outpatient. He went and checked and came back to me and said I could go. Whew! 

Well I really don’t see that coming. It’s astounding what can go wrong in one little body. My family were understandably upset and worried. They feel I’ve had enough to deal with and how much more do I have to put up with? I don’t see it like that. I think it’s all a continuation of the same thing. It’s not something new as such just an extension of all the rest of it. I’m not worried or upset. I just take it on the chin as always and thank God that I’m blessed with a 6 pack spirit. 

Since Monday I’ve continued to have a numb and tingling arm. I keep dropping things as I don’t feel them in my hand. It hasn’t stopped me sorting out sone bits and pieces. 

The weather in Kent was beautiful on Tuesday. I still continue to see the beauty around me and I also remind myself that above the clouds that are around today, the sun is still shining. 

I hope that wherever you are in the world you also see the love that surrounds you and also feel the hope of the coming spring. 

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.