MDS Naked Truth

 Today is World MDS Awareness Day. The theme this year is about knowing your type. For those who are not so familiar with it here are the basics. 

MDS stands for Myelodysplastic Syndromes, and it is a group of malignant blood disorders in which the bone marrow fails to produce healthy blood cells.

All types of blood cells can be affected, causing a range of symptoms.

* Red cells (also called erythrocytes) – which carry oxygen to organs and tissues in the body. If these are low you look pale and can be breathless. If really low it can make you feel faint. 

* White cells – which collectively fight against infection. These cells help with any infection that you develop. If these are low you are really prone to infections. 

* Platelets (also called thrombocytes) – which prevent us from bruising and bleeding. If these cells are low you can bruise really easy. 

To understand why it’s called this weird name. Myelo means bone marrow and Dysplastic means strangely- or abnormally-shaped. This means when cells are taken from the bone marrow they look odd under the microscope. 

There are many different types and sub types of MDS. The World Health Organization (WHO) has developed a regularly updated classification for separating the different types. The system has changed about 3 times since I was diagnosed in 2000. This current system is based on the blood results, the appearance of the bone marrow, the number of abnormal immature blast cells and any chromosome changes found. The immature cells are called blasts, which may be increased in some of the types of MDS.

There are broadly six types of MDS included in the current 2016 classification. These are:

MDS with single lineage dysplasia (MDS-SLD)

MDS with multilineage dysplasia (MDS-MLD)

MDS with ring sideroblasts (MDS-RS)

MDS with excess blasts (MDS-EB); MDS-EB-1 and MDS-EB-2 MDS, unclassifiable (MDS-U)

MDS with isolated del(5q) or with 1 additional abnormality

As you can see it’s a very scientific and specialised field to get your head around. My subtype is Hypoplastic MDS-MLD. This means all three lines of blood cells are affected and my bone marrow is also low in cells. I’ve always been a bit different and never totally fitted in to a neat box. 

I hope that factual start to this blog for MDS World Awareness Day helps you to understand the complexity of this condition and why it impacts on so many things. 

I have a new sofa at home. It’s a bit lower than I’m used to. In order to help me stand up I put my elbow on the arm of the sofa to lever myself up. Unfortunately my arm slipped off and despite the fact that I had a jumper on, my skin ripped and left the sore looking wound in the photo. My skin is incredibly thin and tears easily. This is due to the long term use of steroids for the GvHD (graft verses host disease) that I suffer from. My skin also bruises incredibly easily. Again the long term steroids cause this as well as having fragile veins and cells. The final insult from having had to take so many steroids is I have incredibly weak muscles. I cannot climb a flight of stairs in one go anymore. I can’t get up from low seats. I can’t carry shopping and walk. It’s amazing what my body has been through and continues to experience. 

I have some good news too. I finally had my PEG removed. This was a feeding tube that was inserted 3 years ago. It was put in when my gut GvHD was poorly controlled and I wasn’t able to absorb food or keep much down. At the time it was a God send. I’ve improved a lot since then and with the new expensive drug Ruxolitanib bringing most of these awful symptoms under control and some other new and innovative medications I’ve been eating well for the last year and haven’t needed to use the tube. 

I still have stomach problems. Sometimes my stomach doesn’t empty and hours after I’ve eaten it all comes back up all undigested. I also get a lot of reflux. Taking all that into consideration the gastroenterologist decided that when they were removing the PEG they would also insert a Bravo Clip. This is a microchip that’s attached to your oesophagus and sends signals to a recorder device you wear around your neck. It’s not a good look in these scary days of terrorism. The idea is that the microchip measures how much acid, if any is coming up out of the stomach. My study was for 96hrs. I puked twice during this time so it will be interesting to see what the results show. 

As well as all this I also had 4 polyps removed and several biopsies. It seems I have some thickening of my stomach that doesn’t make sense. That’s me all over. So many doctors tell me I’m a challenge or that I make their brains ache. It’s not always good being unique. Lol. Anyway I’m really pleased the PEG has gone even if it does leave me with 2 belly buttons. 

As regular readers of my blog will know the above procedure had been cancelled 4 times. I was at my wits end with it all. This time they decided to bring me in and do all the horrid bowel prep once I was admitted. I arrived at midday on Monday. I was told there wasn’t currently a bed and things were difficult. I was asked to sit on a chair out in the corridor. Several staff came and apologised for leaving me there. I couldn’t eat or drink anything in case it was to go ahead. Around 4.30pm a senior nurse came and got me and said they had a bed on the general medical ward. I was relieved until I got to the ward. 

I was shown to my bed and found myself in a bay that had 6 beds in it. I’m used to my individual rooms on the haematology wards with their own loo and shower. This bay had the one shared toilet and I knew I was going to have to do bowel prep. 

I saw the lovely doctor who said the team were really pleased I was in a bed and that it was finally happening. She also explained that bowel prep should have been started earlier as I was due in theatre the next morning. She said I wouldn’t get much sleep. I had 3 sachets of that disgusting stuff 3-4 hrs apart. I was up all night going back and forward. Two of my neighbours were also talking all night and kept going off the ward to smoke amongst other things. They seem to have no idea of the noise they were making. Fortunately the other two women in the bay seemed oblivious and I wasn’t asleep. 

In order to try and protect myself I kept the curtains pulled round my bed and the window open. I also kept my mask on even when sleeping. It was a bit scary. My main medical team tell me to continue to shield and be extremely cautious and yet here I was in the middle of a load of non mask wearing patients who had no idea how vulnerable I was. I had to tell all the staff that approached me to take extra precautions as otherwise I would have just been one of the many not needing anything special. It was worrying and I was glad to get home. 

So on this MDS World Awareness Day I want you all to know that MDS may start in the bone marrow and blood cells but it’s impact is global. Some of that impact is as a result of treatment. I don’t think there is one area that hasn’t been problematic. Here’s the list of the legacy I live with from top to toe:

Dry eyes

Cataracts

Dry mouth

Taste changes 

Cracked teeth

Serious hearing loss

Mouth ulcers

Sore throat

Hoarse voice

Small skin cancers

Dry and itchy skin

Under active thyroid 

Adrenal insufficiency

Nausea and vomiting 

Muscle pain and weakness

Joint pain

Small stress fractures in neck and back

Osteoporosis 

Ingrowing toe nails

Peeling and disfigured fingernails

Breathlessness and reduced lung function

Fragile skin that easily rips or bruises

Gastroparesis 

Reflux

Extreme fatigue

Brain fog

Reduced kidney and liver function

Mild pulmonary hypertension 

High blood pressure

Oedema 

I’m sure there are other things that I’ve forgotten to mention. Despite living with all that and despite the challenges of always having to advocate for myself to keep me safe, I am incredibly grateful to the staff and team that saved my life over and over again. I of course also owe a debt I can never repay to my little sister Gail who donated her stem cells. This week marks 5 years since my transplant. So much has happened in that time. 

Some of the amazing things that have happened in these 5 years include seeing my grandchildren grow and blossom. Seeing my daughter expand her horizons and take off in different directions. Find and meet my sisters Sandra and Linda and my brother Russell who I’d never met before but now we are all great mates. As the saying goes “you’re a long time dead” so make sure you get the most out of life. 

What does the future hold? Who knows. I’d like one day to be able to get back on my motorbike. I so miss that feeling of freedom. I’d also like to do some more writing. Ultimately I’d like to get well enough to do a bit of work too. And of course to continue to spend time with my long suffering partner and the rest of the family and see what direction the grandkids go as they hit adulthood. It’s not too much to ask so I hope I can achieve it. 

For all of you reading this wherever you are I hope it encourages you to never give up. Just remember that a mighty oak tree started it’s life as a little nut that held its ground.

Celebrating love

We all continue to live through very strange times. It’s still scary for me to see so many folk returning to “normal” like with the huge crowds at premiership football games. I know we have to do this but I am concerned about the impact on infection levels. I suspect we will have another spike once the kids go back to school too. 

Where does all this leave me and people like me? I was reading a lovely friends Facebook update. She’s not having a straightforward time of it since her transplant. She gets her friends and family to do lateral flow tests and like me she entertains only out in the garden. This is fine when the weather is good but won’t be so easy come the autumn and winter. Sometimes it just all seems relentless. The ongoing uncertainty for those of us with weakened immune systems combined with the uncertainty about our health and related matters means that life can be very challenging. The recent talk about the vaccine efficacy declining is also concerning. 

I’m lucky in that I don’t look on the dark side of life. I’m pretty upbeat most of the time and feel very fortunate to have been blessed with this temperament. Recently I had an MRI of my spine. Weird to have it on a Saturday but shows how the NHS is playing catch up just now in so many disciplines. Waiting lists for elective procedures are the worst they’ve been for decades. Despite these extra pressures the NHS keeps going. I’ve been booked in for my PEGJ removal procedure again next week. This will be the 4th time, as many of you will be aware, that I’ve had to start prep for this minor surgery. I’m already feeling the impact of stopping my stomach acid reduction medication and I’ve only been off it one day! Last night I woke up choking and coughing and spluttering. It was horrible and was quite a violent way to wake up. I thought I was going to be sick. Luckily that didn’t happen but it seemed to take ages to settle. I had to prop myself up in the end. That helped and I eventually managed to get back to sleep. I’m really struggling with indigestion and heartburn. It makes me feel pretty rubbish. I’ve also got gut ache. It’s a shame because I’m away for my cousins wedding. It’s the first time we’ve been away in 2 years. My cousin has a separate granny annex which makes the visit possible. Sadly I can’t join in as much as I’d like due to feeling a bit pants and the need to continue to shield. At least I can be here though and that’s been a great boost. 

In reality, when I think about it, I’ve been feeling a bit off colour for a couple of months. When I say something like this I mean I feel worse than I usually do. I can’t remember what it feels like to feel well and normal any more. What is normal any way? What’s normal for a spider is chaos for the fly! How it’s manifesting itself just now is that I often feel slightly headachey. I also feel as weak as a kitten. I struggle to walk any distance, and stairs are a real problem. I have to stop after every few steps because my legs don’t want to carry me. I also get out of breath and can’t walk and talk at the same time. I’ve been experiencing a bit more nausea lately too. 

On top of these challenging symptoms I also find myself wondering if something is going on neurologically? I have always slept very soundly. I also sleep in a very still and quiet way, hardly moving at all. These days it’s a very different story. I moan and make noises all night. I feel dog tired all the time in the day and it’s almost like being sleep incontinent as I want to, and could, fall asleep at the drop of a hat. I continue to experience numbness and tingling in my hands and aches and pains in my muscles and joints. The other weird thing is when I’m walking I sometimes feel like I’m veering to the left. Strange eh? I’ve become very clumsy too which is not good when you’re taking blood thinners. My arms and legs are covered in bruises. They make some very interesting patterns. It gives me something to look at when I’m bored. Lol. The final thing that’s becoming more of a problem is my hoarse voice. It’s been happening on and off for about a year but the last few months has become more pronounced. I find it very difficult to project my voice or sing. There’s so many possible causes for this but at the top of the list I’d put either reflux or peripheral neuropathy. Time will tell. 

I suppose I feel like there is a global weakness throughout all my systems now and I am full of doubt that things will ever improve. That’s a hard place to be. I’ve never shied away from the hard places or the tough stuff and I know all this will calm down and I won’t always feel

it so acutely. My old GP who I got on so well with was brilliant. He was my local doctor for 20 years and I still miss him. He was always very down to earth with me because he knew me well and knew that I didn’t want anything hidden from me. I remember him saying to me “you’re not destined to make old bones”

That’s a bit how I feel just now.  I am constantly standing on ground that shifts beneath my feet. I’m trying to hang on but I’m made of less and less substance and I’m getting exhausted. I want Covid and the restrictions to end. I’d like to be able to get out of a chair without help if it’s a bit low. I’d like not to have so much pain. I can live in hope! 

I’m happy to put this all on the outside of me because it does less harm there. We all need to vent at times so please don’t read this as me giving up because I’m definitely not. I just need to say I’m at that point in this marathon dalliance where I’m not sure I have much left in the tank.  

This week has been good though and is just the tonic I needed to offset my current challenges. As said I’m unusually away from home for a week. And as it’s the first time in over 2 years that I’ve been away it’s been quite exciting.  My cousin finally was able to get married as the Covid restrictions have lessened. It was an utter joy to be there as a family member for Claire and welcome Sarah into the family too. It was bitter sweet as it was the first time I’d been able to visit since my lovely Aunt Dorothy and Uncle Richard died within 2 weeks of each other at the beginning of the pandemic. During this time so much has changed for people. As much as I moan about all my aches and pains, it sure beats the alternative! I am very grateful to my little sis Gail for donating the gift of life to me and for all my special family and friends who make it as safe as they can to enable me to participate as much as is possible safely. 

The photos show how well I look, especially when scrubbed up! It also shows how looks are very deceptive. I may look well but I don’t remember being in this much pain for years. My back is giving me some considerable gyp. I’m hoping it’s not going to last much longer. 

As mentioned On Wednesday I’m due to have my PEG J removed for the 4th time. I’m also have a polyps removed abs a chip inserted into my tummy that measures stomach acid. If it goes ahead it will be the first time in 5 years that I won’t have a pipe sticking out of my body. I can’t wait. 

As this procedure has been slotted in, no one took much account of the fact that I’d be away for the week before. I’ve had phone calls from endoscopy all week. Here’s a summary of my first phone call for your amusement. 

Hello can I speak to Mr Grant please

Hi it’s Kes speaking. 

I need to speak to Kes Grant

Yes it’s Kes speaking. 

Oh ok. Is he aware that he’s coming in for a procedure. 

Yes she is. 

Does he have any Covid symptoms. 

My name is Kes Grant and I’m a woman. 

Oh it says he

No it’s says Reverend but many of us are women - sigh!

The conversation then went from bad to worse. The nurse was insisting I get a PCR test on the Saturday. I explained I wouldn’t be back in London till Sunday. I was told I had to book a test but when I tried to, it was book on the day. The nurse told me they needed confirmation of a booked test. The test Centre told me that the hospital had to make the arrangement. I was going round in circles fast. 

In desperation I spoke to my lovely haematology gang. Jamie got the short straw of picking the phone up to me and went out of her way to sort the problem. She was able to book me in for a test on Monday morning in ambulatory care. I also managed to get a test on Saturday in Nottingham. So with the belt and braces approach hopefully it will be good enough. 

Then I was  told the procedure had been delayed a day to enable a test result to come back and to make sure there was a bed for me after the bank holiday. So I’m only away for a week and it’s the first time in 2 years and I spread a considerable amount of that time on the phone or internet sorting out medical things. It can be so bloody annoying and frustrating not to be able to get away from health related issues. 

Oh my days. What a palaver! Please would you all pray or send positive vibes that all goes ahead this time. I shall let you all know one way or another. In the meantime I hope you all stay safe and find some love and hugs in all you do. 

Mini Rebel

I’ve had a really interesting week. To start with I was asked to talk to a 6th form RE class. As part of their A levels they have to engage in the differences within the Christian faith and why people believe certain things and some groups have different beliefs. The person they had before to talk from an insiders point of view was a rather staid cleric. A friend of mine works at this school and was chatting with the RE teacher about the problem and suggested he approached me to chat to the students. 

Having worked in secondary schools for 8 years before leaving due to my bone marrow transplant, I am well used to teenagers. Also I have 3 teenage grandsons and a granddaughter who is 10 going on 28. Lol. More about her later. I’m known as Rebel Rev. Someone said to me once that I was the most unholy holy person they had ever met. I took that as a compliment. As such there is nothing I like more than stretching young people out of their black and white world and into the grey. We talked about sexuality and same sex marriage. I could hear a few sniggers when I said “if you are against gay marriage then don’t have a gay marriage,” They were astounded that I can bless a tank but not the union of a loving and committed same sex couple. We also talked about termination of pregnancy. There were also questions about why there are two creation accounts in Genesis and why do people believe different things. I really enjoyed responding to these questions and opening up their minds to celebrating differences and living with questions rather than having to have all the answers. It was just a shame that because I was doing this via zoom I couldn’t hear all the students remarks so well. Hearing aids don’t always help with modern day communications. 

One of the things I love about being a mother and grandmother is watching the grandkids create Khama with their parents. My daughter wasn’t much trouble growing up apart from wanting to do all the girly things. She once wet her knickers so she could have a frilly pair like her friend who’s house she was playing in. Lol. By the time she was 11 I was giving her the child benefit so that she could choose her own clothes. She was so particular and wouldn’t accept my advice so I let her take a lead on it. She learned the hard way about buying kitch and making her money last. I love seeing the payback now with her kids. The boys are particular about their appearance but this is nothing compared to Molly. She is head strong and confident. She’s been at home because of an outbreak of COVID in her school. One of her brothers was at home too. Molly loves you tube and taught herself gymnastics and make up all from checking various you tubers. Then she decided to save her mum some money and cut her long hair. She recorded herself doing it as she followed the steps on YouTube. The attached video is the outcome. I just love it. I had a chat to her today and said she was like me. She knows that my parents weren’t the best mum and dad. I told her my philosophy was if I’m gonna get in trouble any way I might as well get in trouble for something that I’d done. Also I introduced her to the concept of asking for forgiveness rather than permission. It’s so wonderful being a grandma and being able to implant these subversive ideas. I’m attaching Molly’s video of her cutting her hair with her permission. I hope you enjoy it as much as I did. 

I’ve lived with cancer and it’s fall out for all of my grandchildren’s lives. I was fitter when they were small and I did teach the boys to swim and dive and started their football skills off. It’s been harder with Molly because my health has been worse but we do have a fantastic relationship. When she was little she followed me everywhere. I had to let her have a walking stick because otherwise she was always nicking mine. When I got my mobility scooter she was often on my lap as we whizzed around places. She is slight in frame and stature but mighty in spirit and it’s great to see her blossom. As she wants to be a Youtuber I agreed to put her video on my channel. The world better watch out for this one. I think in time she may take it by storm. 

As for me, I’m still breathing but I’ve come to realise that I’m never going to be totally illness free. I’m not going to get my life back the way it was but I can still have a different sort of life. I have problems with my bones, muscles and nerves. I have a bit of nerve impingement in my neck. I’m still getting numbness and pins and needles in all my limbs. My right arm doesn’t alway feel it belongs to me and at times I lose my grip on things because I can’t feel them in my hand. It’s likely I have peripheral neuropathy from all the chemo. I still need a neurologist to check this out and I’ve still not been seen in the TIA clinic (mini stroke). My blood counts are pretty good just now. I’ve had a horrible and painful abscess on the back of my leg that was successfully treated with antibiotics. That shows that I can fight infections if I catch it early enough. I’m still trying to get down to 5mgs of prednisalone. As a result I’m in more pain and have more stiffness. I really really need a massage but that’s not going to happen during the pandemic. 

The hardest thing for me continues to be the never ending shielding due to my ineffective immune system. Last week my grandson and I were chatting in the garden about a problem he was having. He got upset and I hated the fact that I couldn’t hug him. That hurts me more than anything. I can’t even say oh blow the guidelines and hug him anyway. Many of you will wonder why. It’s quite simple really. If I were to pick anything up and one of the family had hugged me, they would never forgive themselves. As a result they are all anxious around me. I have to deal with their fears in a respectful way. That’s why I don’t hug them. I’ve also told them that if and when I do die, I will shake my chains at any of them who feel responsible. It’s my immune system that the culprit, nothing else! 

I went into a shop the other day and there was not much social distancing going on. Also half the people weren’t wearing masks. I had to leave. I’ve managed some how to keep myself alive for 21 years of living with cancer and it’s treatment. Now my very survival depends on people doing the right thing and seeing me and my needs due to extra vulnerabilities. I want to be around long enough to see my beautiful grandchildren become the amazing adults they will be. I want to love my daughter through the changes that come as 4 kids grow up and leave home. I want to give my partner of 30 years as much time as I can. Please help me and continue to keep your distance as well as wear a mask in shops. 

https://youtube.com/watch?v=laKPRl1nMpU&feature=share

Black Alert

 I have so many thoughts and feelings running through my head ranging from excitement to frustration and dejectedness. So why such mixed emotions? 

Well the excitement is about tonight’s semi final in the European cup. #euro2020  England are playing Denmark in case you didn’t know. Even that provokes a mixed response. I love my football and have watched nearly every match of the tournament. When Christian Erikssen collapsed on the pitch in Denmarks opening game and needed CPR, you I couldn’t help but feel emotional. In real time to be watching a fit young man fight for his life was incredibly sobering. It makes you think that if it can change for him in the blink of an eye, how much more is that possible for those of us who live with cancer and the effects of treatment. What’s lovely is that a wave of goodwill and positiveness had enveloped the Danish team. Many people wouldn’t mind if they won, except that challenging problem that in order to win they’d have to knock England out. For me I guess it’s a win win situation. On balance I hope England win tonight because I feel they stand a really good chance of winning the whole tournament. 

So that’s my explanation for feeling excited. Moving on to the frustration aspect of my current mood. Yesterday I was due for surgery to remove my PEG. On top of this I was also going to have a microchip clip placed on my oesophagus to monitor my stomach acid. The final unpleasant bit of the surgery was a colonoscopy and polyps removal. I was due to have this done a year ago. I did all the bowel prep and got to the point of being wheeled in for the procedure when the anaesthetist decided I was too high risk and needed more experienced people around me. You can imagine after drinking all that awful tasting liquid and feeling like my insides had been emptied, I was not best pleased. 

The pandemic then put pay to me getting the procedure done again until I was given the date for this week. In order to make sure nothing went wrong, this time I met with 2 anaesthetists for an assessment. They decided that because I’m high risk that I needed a bed and it couldn’t be done as a day case. 

In preparation for all these various bits I had to stop taking my blood thinning medicine for a week. I’m on these for life now because of having the mini stroke. I also had to stop taking the medicine that controls my stomach acid and some painkillers for my guts. That meant I felt a bit rough for the week as of course the symptoms that these drugs treat came back. 

The worse bit was yet to come in the form of the yucky bowel prep. I had to stop eating at 1pm the day before and been on a restricted diet for the week before.  At 6pm the evening before I had to drink a litre of this foul tasting mixture. It took me a couple of hours to get it all down and was up and down like a yo-yo until the early hours. Then I had to be up and drink another litre of the stuff at 6am. I’m not the best first thing as it is with things that taste nice yet alone this! 

I eventually stopped running to the loo and then gingerly made my way to Kings for the procedure now not being able to eat or drink at all. I suffer from a really dry mouth so not being able to drink is unpleasant. My tongue sticks to the roof of my mouth and my lips stick to my teeth. I had to keep swilling my mouth and spitting out the water. 

I got to the endoscopy department. The staff were lovely. A 2nd year student nurse filled in the paperwork under the supervision of a friendly staff nurse. They had just finished taking my obs when the ward manager came. He told me the hospital was on Black Alert and it was unlikely that they would find me a bed. I was utterly dismayed. This was the 2nd time I’d been through all that horrible preparation for no reason. The nurse explained that they had a surge of covid admissions and even though there were over a 1000 beds in the Trust they had none spare. He said it’s madness that the government have opened up too quickly and it will likely get worse. Shortly after this a consultant anaesthetist came and spoke to me. He said he’d love to do it but couldn’t magic up a bed. He was apologetic and understood my frustration. It was nice of him to say but I don’t think they do totally understand how frustrating it is to have to go through this. What made it worse was when he told me that he had seen an email about being on black alert the night before. 

If they knew the night before why didn’t someone start cancelling patients then? Even if they couldn’t spare me the prep the night before maybe they could’ve told me that morning so that I didn’t have to fast and drag myself over an hours travelling time to the hospital.  Just think about the whole picture. Not taking my blood thinning medicine must slightly increase my risk of having another TIA. The lack of stomach medicines means the excess acid may have caused more damage. Finally the extra medicines adds to the strain on my liver and kidneys. Also it’s important to mention that psychologically these things have an impact hence me feeling a bit dejected. 

Those of us with no working immune system are eternally grateful to all those who help keep us safe. People who wear their masks properly, use hand sanitizer, keep their distance are all great and help to keep me safe. Those who don’t wear PPE, don’t have the vaccination and mix in large groups have a huge negative impact on me even though they don’t know me. I’ve kept myself as safe as I can for 21 years of living with cancer. Now I have to hand my safely and vulnerability over to you and hope you do the right thing. It’s scary. Those that end up in hospital and force one of the biggest London Trusts to be on black alert are also adversely affecting me. I am not getting important procedures done in a timely fashion. This could prove to be detrimental. Are your freedoms worth more than my life? 

Despite all this I know that Kings does its best and the dedicated and hard working professionals in the NHS will ride yet another wave backed up and hindered by an incompetent government. In order for my day not to be completely wasted I went round to haematology to show them a very painful “carbuncle” as my nan would say on the back of my leg. I’ve got an abscess. Victoria, my dedicated consultant, prescribed some antibiotics in consultation with microbiology. She wants a report back on Friday to make sure it’s getting better or to contact them sooner if it’s getting worse. It looks like Mount Vesuvius to me and I hope it doesn’t erupt. Lol. As with all strong antibiotics they are making me feel a bit queasy but it’s only a week. I shall grit my teeth and hope it does the job. 

Sometimes it’s hard to keep plodding on with all these things but what other choice is there? 

One of the other sagas I had this week was a family of magpies came down the chimney and were trapped in my front room while I was away from it for a few days. I have never seen so much poop. Curtains, carpets, tv, sofa, lampshade all covered. It seems one came in, I suspect accidentally as it was young, and then being for family orientated the mum and dad followed to try and rescue. Sadly they all died. 

I know there are good people in the NHS rescuing me. I couldn’t speak more highly about the fantastic job they have done to keep me alive. I just hope that a more thought out process by the government supports them, or else we all end up like the magpies and perishing because of poor decisions. 

Wherever you are reading this, please remember us forgotten shielders. Don’t leave us too far behind when you get to “freedom day” Please continue to do your part to keep me and people like me safe.

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