International Women’s Day

Today is #internationalwomensday so I thought it was a good day to post. It’s also been a year since I had what up till last week was described as a TIA or trans ischaemic attack (mini stroke). I remember the day so vividly. We had a couple of workmen in who were installing a new boiler. I had a mask on as did everyone else in order to protect my immunity. My partner came in the room and asked me something. I tried to answer her and was looking straight at her but no words came out. She turned on her heels and went off thinking that I was distracted or something. Then I started getting this tingling feeling in my arm and leg. I say down and pulled my masks down as I knew something was wrong. My partner came back and spoke to me again. I was trying to write her a note on my mobile but I couldn’t work out how to even open it yet alone write a message. It was weird. She said you can’t talk can you? I was able to shake my head. She said “we’re going straight to the hospital” And we just put our coats on and left. The workman were left wondering what on earth was happening. 

Now we wind on a year. This week I finally had my appointment with gastroenterology. This was the first one since October when they took the PEG out and did various biopsies. The lovely consultant was apologetic about all the mistakes that had happened previously. He explained that the muscle in the top of my stomach was too lax and needs tightening. He said that can be done endoscopically and after 3 months they would check again if it’s worked ok. Then he said the muscle in the bottom of my stomach was stiff and not always letting food through. This is a slightly more complicated procedure but still should only involve an over night stay. The biopsies were all fine. 

It was good to have this info and to know there was a plan to hopefully improve things. 

I was feeling rough that day as originally I had been told my appointment was at 12pm. I then got a text telling me it was at 10am instead. I find getting up early and taking all those horrible tablets really quite challenging. It leaves me feeling very delicate. When I was phoned and asked if I could attend an MRI on the same day I said yes as it’s always good to have two appointments on the same day as it cuts down on the travelling. The scan was booked in for 2pm. 

So after I finished with the gastro appointment at 10 instead of just sitting around and waiting till 2pm, I went and knocked on the door of the MRI suite and asked if they could see me earlier. They were lovely and fitted me in straight away. 

I was home by 12.30pm so it all turned out ok in the end. Sadly though I still felt pretty grim. The effects of getting up so early were still hanging over me.   

On that day I also had a phone call appointment with the stroke/Tia doctor. He was checking if I had any lasting effects from what occurred a year ago. I said that sometimes I forget what I’m saying and I still reach to find words at times. This is unusual for me who is so used to expressing myself and writing things. I also said I still get numbness and tingling in my arms and legs but that could be nerve compression.  I explained that I’d had an MRI that morning and was he able to see the results. He asked me to wait why he looked into the computer. He then told me the MRI was available but hadn’t been reported on yet. Then came the bit that I really didn’t see coming. He told me the MRI showed that in fact I’d had a small stroke last year not a TIA as first thought. I was a bit gobsmacked. He said the treatment was still the same and he was happy to discharge me from that clinic. I was happy to be discharged but did feel a bit overwhelmed by the news. My life continues to be unpredictable and challenging. 

Later that day after unsuccessfully trying to war some supper I ended up doing some of my huge vomits. This went on for 24hrs and left me feeling completely washed out. I gradually started eating and drinking again. Then blow me down if it didn’t happen again yesterday. I’ve not eaten and I’m feeling quite weak and wobbly. 

I know there are several thing against me that contribute to the nausea and vomiting. Alongside the weak muscles and gastroparesis there is also all the medications I take as well as bits of GVHD. Sometimes I would just like a simple life. I long not to feel nauseous and to be able to enjoy food. It just doesn’t happen. 

I sent an email to my haematology consultant. I said I wondered if the antifungal and antibiotics I was currently on for my chest infection. They are stronger than the normal stuff so that’s what makes you feel ropey. She has suggested I stop taking one lot and see if things improve if not reintroduce them and stop the other one. This is alongside me already increasing my anti sickness drugs. 

I often say to people I don’t mind being this sick but I really hate feeling unwell. What I mean by that is I know I am limited in what I can do. I can’t breathe very well. I can’t walk without pain. I have no energy etc but the throwing up and constant nausea is awful. That’s the bit that gets me. 

As well as all these challenging things there have been some lovely events going on. My beautiful granddaughter was finally brave enough to do a backwards flip. I’ve been encouraging her and she sent me a video of her doing it. I was so proud of her and loved to see the delight in her eyes. I had a lovely “walk” in the park with some of my sisters and brother. I caught up with my lovely cousins and celebrated their amazing daughters 18th birthday. It’s always important I think to try and see the light as well as walk unafraid in the darkness. 

In my life I have met many amazing women. They have all helped me in different ways to be the strong woman I am today. Among the women that influenced me life are:

My nana

Cagney and Lacey 

Mrs Wilson my French teacher

Ros

Wendy

Commander Kira

Frances

Captain Janeway

Marlene 

Charlie’s Angels

Mo Molem

Greta Thunberg

Maya Angelou

Germaine Greer

Uhura

Jane Hobday who taught me about prejudice

Diana

Demi Moore

Mala Yousef

Suffragettes 

Mary Magdalene

Princess Leah

Then of course I have the wonderful women in my family:

Maggie 

Annie

Molly

Gail 

Jess

Dawn 

Karen

Helen

Sandra 

Sarah

Charms

Abbie 

Sallie

Linda

Caity

Gill

Hannah

Anne-Marie

Mya

And supporting the women some fairly good blokes

Jeff

Will 

Russell

Terry 

John

Nick

Josh

I also can’t let this moment go without paying tribute to the amazing women medics who have kept me going over the years:

Sophie

Geke

Janet

Ashleigh 

Leonie

Kavita

Katie

Victoria

Carmel

Shu

Pramila 

Anna

Ciane

On this special #IWD22 let’s give thanks for all the women who have and who do make us the women we are. Thank you for your love, encouragement and support. I shall finish with some strong womens quotes:

“I raise up my voice – not so I can shout but so that those without a voice can be heard… We cannot succeed when half of us are held back” Malala

“Well-behaved women rarely make history” – Eleanor Roosevelt

“Feminism isn't about making women strong. Women are already strong. It's about changing the way the world perceives that strength.”

G.D. ANDERSON

Rare Diseases Day 22

 

Today is Rare Diseases Day and as my original diagnosis was a rare blood cancer, I thought it would be a good day to write a new blog. 

I’m my last update I explained that I’d been an inpatient and they were treating me for pneumonia. It seems I have a fungal lung infection that then caused a bacterial infection. I was put on some strong antibiotics as well as a hefty dose of antifungals. 

I got out of the hospital Sunday night which gave me a day to prepare for my friends funeral that I was taking. I felt pretty awful. I’m normally very quick in writing liturgies and personal eulogies. I’m lucky that I have this ability to sit and let it all come out in one stream. What I found was that I kept losing my concentration. The words would also start to swim in front of me on the screen. It was a strange experience. I kept at it but it took me twice as long. The other thing I noticed was I was shaking. My hands had an obvious tremor. Also my legs were uncoordinated. If I had to step over something, I’d really wobble. On top of this when I was in the car, I’d look up and not recognise where I was despite it being a familiar road. In what is highly unusual for me, I asked my other half to drive. This went on for a few days. I felt like I was dying. I was uncoordinated and clumsy. I couldn’t concentrate and I was very shaky. 

Despite all of this I was determined to take Eileen’s funeral. It was at a nice time later in the afternoon so I didn’t have to get it together too early. My lovely Maggie drove me to the crematorium and went for a wander in the grounds while I took the service. When I write these liturgies I always print them in large font. This makes it easier to look up and connect with the people at the service and navigate your way back to where you’ve left off.  This was working fine until we came to the hymn. The family were keen to have a hymn because their mum loved music and singing and used to be on the rota to play the recorded accompaniment during our church devices. I told them all they needed to sing. The only problem was the backing track was a choral version that was set too high for congregational singing. Normally I would belt it out and try to encourage others to join in. Sadly though my lungs were not up to singing. The effort it took started making me shake from head to foot. The small print of the hymn words meant the words were swimming before my eyes and I couldn’t find my place. I had to grab the chair beside me at one point and I also gave up on attempting to sing. 

It’s never happened to me before.  I felt vulnerable in that moment and just decided to concentrate on my breathing. Fortunately I was able to dig deep into my soul and find the resilience and resourcefulness I needed to get through the rest of the service. I was so pleased to have pulled it off without incident or anyone noticing. I hope I did Eileen proud. May she rest in peace. 

The next day I took it really easy and recharged the batteries. Then I had to go for a check up to the hospital. I explained how I was feeling and that I don’t remember ever feeling so frail and vulnerable. Normally I sleep like a log for 10-11 hours a night. I hadn’t slept for 3 nights more than a brief doze and this was also making me feel very spaced out. I told the doctor and it seems that the strong antibiotics were the culprits. Also the antifungals were causing problems so they changed both of them and I slowly started feeling normal again.  It’s not until you’re really sick that you realise the huge impact that some of these life saving drugs have on the rest of your body. 

The current additional meds will need to be taken for around 3 months. Healthy adults do not get fungal lung infections. It’s something that only happens to immunocompromised people like me. Fingers crossed there’s not too much lung damage. 

I’m feeling slightly sad just now at the impact all of this has had on my voice. I had to give up so much over the years. Football was a hard one to let go of. Hill walking and circuit training and bike riding all have gone by the wayside. What I’ve held onto was my singing. The last couple of years with covid put pay to communal singing for me. The hard thing for me now is that I just don’t have enough puff. I’ve been struggling to get to the end of the line of music before taking a breath for a while. If you sing with others you can hide that you a breathing in the wrong places. These days though I can’t push enough air out of my lungs with my diaphragm to make a good quality sound. Music is the language of the emotions and it’s speaks for us when we can’t out into words how we feel. It’s also good for you mentally and physically. I really miss it and don’t feel I’m ever going to get back to be able to sing in cathedrals when my old choir covers the cathedral choirs for absence. 

On this rare diseases day I wanted to share with you how debilitating it is to have a rare blood cancer. Then after transplant to have rare side effects like losing my hearing and the ongoing battle with GvHD (graft verses host disease) and now lung damage due to a fungal infection. All these things are rare and people like me are beginning this journey every year. The big cancers of breast, lung, bowel and prostate take the lion share of cancer funding. The rest of us have to fight our corners to shine a light on to the issues. Please help us share our stories of living with rare diseases so that funding is given equally and also so that people begin to recognise the early symptoms of blood cancer. In case you don’t know what they are its:

fatigue

breathlessness

bruising 

night sweats 

prone to infections 

If you are experiencing any of the above, please see your doctor and ask for a blood test. This will be enough to show if there’s a problem that needs further investigation. 

Thank you to everyone who has helped me with living with my rare blood cancer. My family and friends  are an amazing bunch. I’ve also met many dedicated medics. I’m really proud to be part of MDS UK which does so much to demystify this appalling illness and bring comfort and support to so many. On this Rare Diseases Say 2022 I dedicate this blog to Sophie and all the staff and volunteers at MDS UK. You will never know the difference you make to so many. Keep going all of you, we need you and the world needs more people like you too. 

World Cancer Day 2022

 World Cancer Day 2022

I’ve gradually been feeling more and more unwell. My birthday is 26th Jan. I woke early that day. Some of you will wonder if that’s because I’m a big kid and I was excited. That maybe true but that wasn’t the reason why my body woke me that day. Sadly at 5.30am I woke to be violently sick. Up until recently, I’ve always been a considerate puker! Lol. These days I’m not strong enough or speedy enough to get to the bathroom. I also can’t go down on my knees over the bowl so my aim can be off with these huge projectile vomits. My poor long suffering partner was woken by the sound of a waterfall hitting the sick bowl I keep beside the bed. She was worried I’d overflow it and went and got the bin after rapidly chucking the contents in the bath. Even I was impressed by this huge vomit. I was like a scene from Alien or the Exorcist. Needless to say it took it out of me so I slept most of the morning. Not the best start to my birthday. 

However later that day I felt well enough to be up and dressed and really enjoyed raiding the sales online and spending some birthday money. I got a really nice and unusual hoody. I also got some jeans and some really lovely PJ’s. One of the areas I’m lucky in many respects in, is that I have small feet. I’m a 2 or3 and so buy my shoes from the children’s department. I often get a good price because of this but in the sales is even better. I managed to bag myself a lovely pair of Timberlands costing all of £30 and some Uggs for £65. Lucky me eh?  I also saw my family briefly later that day so all in all a good birthday despite how it started.

The same thing happened 4 days later. I woke in the early morning being sick. The difference was a carried on being sick all day in-between sleeping. I felt really rough. It was my delightful nieces birthday and I couldn’t even contact her on her special da as I felt so rough. I then spiked a temperature of 38.7 and my oxygen saturation levels were only 83 at one point. Thats very worrying. I know I’ve been short of breath lately but that was very low. I contacted my team but said that as I had an appointment the next day I would leave it till then. 

You can guess what happened next. I ended up, sadly, being admitted. I was gutted. I’ve tried so hard to stay out of hospital. I knew it was the right thing though because I felt so awful. The working theory is an infection, maybe pneumonia. Im infection markers were 300 and something apparently. Normal range is below 5! They started me on the usual cocktail of heavy duty IV antibiotics as well as oral ones. I’ve been a bit washed out and one of the nights I felt so dreadful that I would have happily asked if they could’ve put me to sleep. Since that bad night, things have improved, thankfully.I’ve got one more day of the IV antibiotics and then they will review to decide if I can come home.

One of the things I was told was that they would be discussing me in the MDT (multi disciplinal team) meeting. I decided it was time I tried something slightly different so I sent some of the team my symptoms broken down into specialisms plus the ad hoc stuff. The meeting was the next day so I sent it off in the hope that me responding differently might help them work out what’s what. This is part of that email

Gastric symptoms

Regular large vomits and lack of food moving through

Nausea

Indigestion and heart burn plus gripes in my stomach

Reflux and waking in night coughing badly with acid stinging my throat

I had my PEG J removed in October plus some biopsies and polyps removal as well as a bravo clip fitted. I’ve not had the results. 

Lack of appetite. Food feels different in my dry mouth and is sometimes getting stuck. 

Transient or occasional gastroparesis. 

occasional huge vomits. 

Possible GvHD symptoms

Dry skin

Very dry mouth

Dry eyes

Very weak muscles

Pains in joints 

Occasional mouth ulcers

Nausea and lower tummy pain

Neurological issues (can GvHD affect the brain?)

Skin bruises easily(?GvHD and long term steroids)

Neurology symptoms

Clumsy

Loss of fine dexterity

Fingers not as sensitive to what’s being touched

Numbness in hands when standing and down mainly right arm. Arm goes cold momentarily 

Legs fee like they will give way at the same time I get this weird whooshing sensation and my hearing seems to go in and out.

Headaches often in the morning

Stiff and sore neck and shoulders

Hard to find some words. Could be since TIA.

Respiratory Symptoms

Short of breath which is very bad on exertion. 

Wheeze from time to time. 

Pitting oedema which has improved with diuretics 

Bending makes me breathless

Lying down makes me wheeze a bit

Ad hoc

Myopathy ? Steroid related

Brittle cracking teeth

Osteoporosis/penia caused some small back and neck fractures 

Headache most mornings

Cold hands and feet

Broken, brittle and peeling fingernails

Counts dropping seemingly after I’m showing signs of infection

The next day I saw Austin. He is one of the seniors now and is world renown for his amazing work with MDS. We go back many years and he knows me well. I only usually see him to exchange pleasantries in passing these days as I’m looked after by the post bone marrow transplant team. He came into my room with his eager group of young doctors. I think these younger ones were surprised by the banter between Austin and myself and the fact that I had emailed him the night before. There are perks to being a long term patient. He `said he was going to look at things with a fresh pair of eyes as he hasn’t seen me medically for 5 years. He wants to organise a heart scan and a brain MRI. I know him and he will ponder and come up with some other ideas. I know with him, Victoria and the fantastic team behind them that I’m in good hands.

The care I’ve received from the impressive and caring staff on the Derek Mitchel Unit has been to its usual high standard. There are many young new staff. One looked after me for the last couple of days and considering how new she is to her profession and career path, she was spot on. She was calm, caring and compassionate. She was also professional and knowledgeable. One of the good skills to have as a nurse in general, but especially with pattens like me is to be observant. She noticed that I was out of puff and checked it out with mE. She also had a student with her and was very good at passing on her knowledge to him as well as helping him to develop the skills and knowledge he needs. With youngsters like this coming through the NHS is in safe hands. The same can’t be said for our present Government. I won’t go into it now as its not good for my blood pressure surface to say. The NHS saved Boris Johnsons life. I hope her remembers that when he is slowly selling it off and privatising bits under our noses!

The blood, phosphate, IVIG, IV antibiotics and care I’ve had have all made me feel back on a level. I’m mightily relieved this is so because unusually I agreed to take a funeral recently and it’s on Tuesday. The team hope to get me out by the weekend. They are aware of the service. Eileen who would have been 90 next month was a former parishioner. We both had an impish sense of humour and she developed a real soft spot for me. I know I can do good funerals and I wouldn’t want it any other way but it’s so challenging sometimes when your body is letting you down. I don’t like that element of doubt. I hate letting people down. 

This is one of the hard things about having cancer and living with the consequences of treatment. I should be able to commit to things and not have an anxious time wondering if I’m going to be alright. One year I remember I was in hospital and they gave me day release to go and take a funeral. I know, where they can. They will work with me. I really appreciate that. Any way looks like I’ll be ok for sending Eileen home and honouring her long and varied life for her family.

As it’s World Cancer Day, I am uploading photos of the struggle. If you don’t like bruises etc then don’t look.  I want to give a big shout out to all my family and friends and anyone coping or surviving this awful illness. Thanks to all the medics and scientists making huge leaps forward and all who care enough to try and make our lives better. It’s appreciated

Making the most of mixed blessings

As another year draws to a close I find myself in a reflective mood. In a few days I’ll be taking down all the lovely twinkly lights. More than ever I was struck by their simple beauty this year and what a difference they make to our dark winter nights. It also occurred to me that I was putting them up mainly for me and my partner as other people are not able to join me in my house. It’s important to value ourselves enough to want to make our spaces beautiful just for us. 

Now moving in to the trickier bits. When the lights are away we need to remind ourselves that they are still there and that no amount of darkness can extinguish the light of one tiny candy. No matter what 2022 throws at you, focussing on the light and not the darkness will get you through it. 

Regular readers of my blog will know I’ve been feeling pretty rubbish for the last few months. I knew something was up but it can take a while for it to become clear. I have had a substantial blip. All of my blood counts have bottomed out. My platelets were so low that I began bruising for no reason. I would also have regular nosebleeds. One day I woke up and my pillow was bloody and my PJ top was wet with blood. I had inadvertently scratched the top of my shoulder and it oozed all night without me noticing. It made a right mess. As well as the platelets being rubbish, my red cells had also dropped significantly. This was adding to the nausea and breathlessness. Finally to round off the picture my white cells didn’t want to be left out and so I’m also neutropenic. In other words no ability to fight infection. 

Fortunately I’m not phased by these ups and downs. There have been too many. It doesn’t mean I take them lightly. It just means I don’t panic and wait and see what happens. Victoria, my consultant, has also been through this with me before. We are both scratching our heads and looking for answers but we don’t have anything definite. I had a dreaded bone marrow biopsy. You can see a picture of the tray after the carnage had occurred. It was a lovely registrar doctor doing the biopsies that day. She took her time and was very calm and an interesting person to talk to. The upshot of all this is that my bone marrow is empty and not producing many healthy cells of anything. The thoracic CT showed a possible resolving infection. My infection markers were sky high too. The working theory for now is I had some kind of infection and it’s caused my marrow to close down because of its fragile nature. Victoria arranged for me to have a blood transfusion and she increased the steroids again and also started me on another course of GCSF (Granulocyte colony-stimulating factor) These are daily injections into my tummy to stimulate my marrow to produce cells again. As some point they will redo the marrow to see if it’s been kick started again. 

As a result of the interventions that Victoria put in I was able to enjoy Christmas Day with my lovely partner and I actually ate my Christmas dinner too thanks to the steroids. Those pints of blood really gave me a boost too. I was able to put some of my lights up and do some ironing and washing up. It’s amazing how these little things become so important when you haven’t been able to do them for yourself. 

The other thing that keeps happening is my digestion somehow switches off and I end up being sick because food has sat still and is undigested. I had the PEG removed back in October and they did some other studies and biopsies that day. Sadly I haven’t heard from gastroenterology since and I’d really like to know the results. Covid is causing so many delays but to be fair some departments cope better with it than others. Gastroenterology has always been a bit disorganised if the truth be told. I will chase it up next week when people return to work after the Christmas break. 

As we bid farewell to 2021 and look forward to the new year, it gives us a moment to ponder and reflect. I’ve always been a reflective practitioner. One of the things I’ve been thinking about lately is the challenge of staying connected when you live with such life limiting illness. I’ve expressed before how distant I feel from church and faith related matters. I also feel disconnected from my Iona colleagues and we are a community that is both gathered and scattered. But what if you can no longer gather? How do you stay connected then? I came across this on social media recently: “When a flashlight grows dim or quits

working, do you just throw it away?

Of course not. You change the batteries. When a person messes up or finds themselves in a dark place, do you cast them aside? Of course not! You help them change their batteries. Some need AA….

attention and affection; some need AAA.. attention, affection, and acceptance; some need C.... compassion; some need D..

direction. And if they still don't seem to shine... simply sit with them quietly and share your light.” I think this simple statement contains some profound points. 

Many people will have heard of the personality typing system Myers Briggs. After completing a questionnaire you get your personality type. The church seems to love it. The types often have a preferred way of working and a shadow side. For example I am an E which stands for extravert. I get my energy from being with people and bouncing off them. My shadow side which depletes me is I for introvert. Introverts get their energy from silence and alone time and being with their inner world. All of us can do both but some are more naturally one way than the other. For 2 years now I’ve had to operate as an I. I can’t see people in person and have had to find ways to be creatively together. Operating in you shadow side is tiring and my energy gets zapped from doing this. 

I think I’m running out of steam now after 2 years of operating like this and there still being no end in sight. What I need is others to also notice this problem and be proactive about it. Churches and religious communities need to think through the unique issues caused by a global pandemic especially for people with serious illnesses or disabilities. Are we useless or do we just need others to notice our energy is dimming and we need charging up? 

As we say goodbye to the old and welcome in the new, I encourage you all to think about continuing connections going forward. If people are on the edges and margins for whatever reasons, what can we all do to make people feel included? 

With regard to my unique health issues, I will continue to make the most of the body I’m inhabiting. The more life and light I can squeeze out of it the better. It will be a miracle if I make old bones, so I’d better continue to try and live 3 lives in one in order to experience it all. I know my NHS teams will continue do the best for me. I also know there will be some testing times. My job as these uncertain times continue is to refuse to focus on the darkness but to keep focussing on the light even if it’s dim. 

Wherever you are reading this I hope you have a happy new year. I also hope you enjoy all the pictures of me trying to live in this body as well as all the light and love I’ve been able to share with my family and friends this festive season.