May the 4th be with you

I'm sitting here with my laptop on, feet up and the TV on giving me the latest mayoral and local election results. I'm feeling quite content with the results so far and hope that all political parties truly learn from what the people are saying. Lets hope the same happens when the general election comes and that it's called soon. We need to face our problems like adults and start sorting this mess out. 

Regular readers will know I picked up covid for the first time in July. I've been below par ever since. I've had a dreadful cough. it's not so bad now but it's still very present especially in the morning. On top of this I've developed chronic sinusitis. It's horrible. Last month I had an endoscope shoved up my nose to confirm the chronic sinus problem. The consultant was a gentle soul. He told me to use a decongestant nasal spray for 10 days as well as regular wash outs. It didn't work and I ended up with a few nose bleeds to make matters worse. When my sinuses are full it puts pressure on my face and gives me a headache. Also on the side that's more effected, the darkness under my eye is worse, so much so I've been asked a couple of times if I have a black eye. I don't know if it's connected. I go back to him in August to work out what next. I hope he can do something.

On top of all this, every now and again, I feel dizzy and very nauseous. My appetite is reduced and I've had a gippy tummy. Last night my lovely little sister invited me and Maggie for dinner. She knew I hadn't been eating so well, so she did a jacket spud with some picky bits. She's very thoughtful like that. I didn't manage to eat what was on my plate. About 30 mins after finishing eating. I'd been sitting very relaxed and chatting, when all of a sudden I didn't know if I was going to pass out or be sick. Gail is sick phobic so I knew I had to get out of the way! I managed to stagger out of the room and get to the bathroom. I was sat on the side of the bath but then realised I may pass out so better to get on the floor. Sweat was pouring off me and my breathing was really ragged. My skin felt prickly and clammy. If it's just because I'm going to be sick I don't have all the other symptoms and I get sick really quickly. It took a while for the sick to come up and a while before I felt able to stand again. Normally being sick doesn't faze me at all. I'm so used to it and generally very quiet about it. This time I felt slightly anxious as it impacts on another weird symptom. It's horrible at the time but wears off pretty quickly.

The first time I experienced this weird symptom I mentioned earlier was when I was in Ireland, just after being diagnosed with covid. I was sat at the table eating a meal with my family, including two grandchildren. All of a sudden, I started to cough. It was like food had gone down the wrong hole. As I struggled to catch my breath, it was like my windpipe totally collapsed. I couldn't breathe in or out and as I continued to struggle I was making this awful high pitched noise as I tried to get air in. My partner was frantically slapping me on the back. I remembered that sitting and leaning forward is the best position to open your chest so I sat down. After what seemed like an age but was probably not much more that a minute it suddenly opened up and I could breathe again. I made some quip to the grandchildren about 'well that was dramatic"and tried to gently eat the rest of my food. Inside I was trembling. I am a calm person but that stressed me. 

It happened again on another occasion when I was eating a meal at home. Exactly the same. It's like my windpipe just shuts and I just can't breathe in or out. This time it was only me and Maggie. I have to force myself to be calm which is not easy. I mentioned it to a doctor who had no idea but said to keep an eye. The third time it happened, I was having a meal with my brother and sister-in-law. The offending bit of food was a piece of raw broccoli. It only touched the back of my throat, I didn't even swallow.

This time I sent an email to one of my consultants. He said it's not my windpipe collapsing but a spasm and to go to A&E if I'm worried. Not particularly helpful. I wouldn't go to A&E after its happened because I'm fine then and I do't want to waste precious NHS resources. The last time it happened it was not around food at all. I was getting ready for bed. Maggie was out. I just started to choke for no reason. and my airway slammed shut. I sat on the bed and lent over my side rail. It seemed to go on and on. All I could hear was this high pitched noise and I could feel the panic rising. I was convinced Maggie would come home to a corpse! It was a horrible experience and was by far the worst one. As a result I reminded Maggie how to give CPR and what to do in that scenario. Not a nice thing to have to do but I was convinced it was getting worse.

This has left me with an anxiety I've never had before. I'm much more aware of how I eat. When I got sick last night I began to feel the vomit catching my throat. As I was throwing up I was thinking "Oh my God. What if it happens now?" Fortunately it didn't. I was mightily relieved.

Going back full circle, when I met the lovely ENT consultant I asked him if he knew about throats as well as noses. He asked me why and I explained. He asked me if I have reflux, which I do. He explained he thinks it's a spasm that cut's the breathing off for a while but then is ok. He said worse case scenario you pass out and your breathing comes back to normal. It can often be triggered by a respiratory infection. Well I've had one respiratory problem or another since July finally having a negative test at the beginning of March. 

The ongoing and relentless nature of these late effects from my cancer treatment, at times leaves me really debilitated. I refuse to lose spirit though. On this special Star Wars Day I want to encourage you to feel the force within and around you. You are all so much stronger than you think. Always remember."This too shall pass!"

Bittersweet Times

 

Today was one of those days. I experienced a real bittersweet moment. I’d had the engineer out to the washing machine. It was pulled out from under the work top. I thought I could easily slide in and hunch down and pull the plug. Instead as I hunched down my legs slowly gave way and I gracefully ended up on the floor like a snow figure melting. Me and my long suffering partner were in fits. She had to pull the washing machine out more so that I could shuffle on my bum out of the confined space as I didn’t have the power in my legs to stand up. It wasn’t dignified as I had to get over on all fours and then be hiked up by Maggie. We both kept laughing about it. She said to me “why on earth did you do it?” All I could say was that I forgot my body was so feeble and went to do something that normally a 56 year old should be able to do. That’s the bitter part. It’s very hard to be reminded of all the things you can’t do. Luckily for me, I feel the pain of the situation and let it wash over me (pardon the pun) and then I move on. It’s so important not to be trapped by the harsh realities. 

I’m not really enjoying this cold weather. I don’t like it at the best of times but now it’s more significant because it means it’s hard to socialise as I can only see people outside. I do have a plan to try and tackle it but the practicalities are proving to be challenging. I have a side return on the house that’s just under 2 metres wide. Most rectangular gazebos are 2 metres, so just too wide for the gap. If I got a rectangular parasol that was 2 metres, that might work as I could put it above the boundary. I just need something that would create a temporary shelter where I could see family and friends. I will also purchase a heater once I can locate a solution to the shelter. Any of you handy type people out there are welcome to make suggestions around what may work. 

We are fast approaching Christmas. I love Christmas, especially all the twinkly lights. It makes me smile as I drive around and see the festive decorations. This year the ads on tv have the additional dimension of it being great this year that we can all be together after all the restrictions from last year. I am really pleased for those of you who are able to meet up and have these special celebrations. For us blood cancer sufferers or those who’ve had stem cell transplants or are immunocompromised for any reason, life hasn’t changed. We are still shielding. It is just stretching on and on without a solution so far. I know scientists and medics will keep going until an answer can be found. 

Alongside the heavy emotional and psychological impact of our times, I’m also struggling physically. My appetite is waning. I keep getting nose bleeds and I’m absolutely covered in bruises. I get breathless easily and feel light headed at times. I know where all this is pointing but I hope I’m wrong. 

During my time of living with MDS and the consequences of treatment, I have met many amazing people. It seems no one has a straightforward diagnosis, treatment and recovery. We all work in different ways and heal in different ways. It’s so good to have an MDS family around you who identify with shared experiences and are willing to share and support and give of themselves. Evie is a teenager who bravely battles all this. Emma is a young woman who’s still not in remission despite 2 transplants. Fiona and I have known each other for over 20 years and she’s struggling to get her cells to make the right response to her transplant. The lovely Ted is also having a rough time following his transplant. While it can be difficult to experience what we go through, it’s vital that we still feel empathy and support others. It also shows that there is no one type fits all approach. 

Alongside those of us struggling there are some great examples of what we are aiming at. Russell had 3 transplants and went on to run marathons. I love reading the accounts of our members who are thriving and back at work. It’s always important to keep perspective and balance and not only see the challenges. 

Regular readers of my blog will remember that back in March I had a mini stroke. It was scary. I lost the power of speech for a while and had weakness and numbness in my arm. It didn’t last long fortunately but I have noticed some lasting effects. When I’m chatting I often can’t remember a specific word I want to use. I’m much more forgetful too and I don’t concentrate so well. 

As I finish this blog, as well as giving thanks for all the people who accompany me through these trials and tribulations, I also want to thank and give a big shout out to all those working in the NHS. In the last month between myself and my partner we have both been vaccinated with our 3rd dose of covid vaccine. Im also due a 4dose as a booster. We’ve also both had our flu jabs and Maggie had a shingles vaccine too. She also had her bowel screening done and tomorrow we both have our breast screening mammograms. Oh and I mustn’t forget that I’ve also seen a professor in haematology, received IVIG, seen a consultant rheumatologist, had surgery to remove my PEG and a few polyps and assess my stomach acidity via the bravo clip. That’s an incredible amount of skill and care that we all have access to in this country. It makes me feel very lucky and really blessed. My heart always goes out to the people from abroad who’s stories I read who can’t afford the treatment they need. Please protect the NHS at all costs. It’s priceless what we are offered. Let’s not follow other systems that don’t do nearly as well as our system. I know it’s not perfect but when it comes to looking after you when you are seriously ill there’s no better. 

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)