Plague tablets!

A short blog from me. 

As you are very aware I’ve been coughing a spluttering since picking up my first covid infection in July. I’ve been feeling pretty grim. I came in for a review on Friday and was profoundly neutropenic again. This means back to injecting every day. The worst bit though is my infection markers went up and I was started on some powerful antibiotics. Unfortunately for me these come with side effects. One of the rare effects is sleep disturbance. I sleep soundly normally and I’m sure that helps me keep my sunny disposition. In the last 3 nights I’ve had the equivalent of 1 nights sleep. I’ve been joking with folks about all that been going on with positive swabs for covid, flu and rhinovirus and saying “what’s next, plague?” Well look at the top of this at what my antibiotics treat… Lol 

Fingers crossed that the results are better today and they let me home. I just need an end to all this snot!

Rebel Rev at it again!

 I’ve had a busy day so far. It started with a chat on BBC Radio Kent about a silent disco happening in Canterbury Cathedral. Then I had an interview for the TV in the form of BBC South East on the same subject. Next I was off to physio in Dulwich and now I’m at haematology in King's College Hospital. The nurse commented that my blood pressure was slightly raised. I just laughed. 

This week I took the funeral of Maggie’s cousin Joe. It was a very unusual funeral. I always do stand alone unique services within my own framework. Joe was such a mischievous cheeky chappy that I decided to lift jokes from his Facebook page and intersperse them throughout the service. I was slightly apprehensive as I’d not done that before but I felt Joe’s family and friends would find it apt. I set off the day before as the service was in Slough and I didn’t want to risk the motorway on the day. I got to the hotel and said to Maggie, “oh no, I haven’t got my clerical collar” As we checked in I spotted a wedding brochure that was made of white card. I nabbed one and Maggie cut a strip into the right size to slip inside my collar. Lol. As she held it up to me, I suddenly realised I’d forgotten my robes too. What an EEJIT of the highest order. Fortunately my sister and daughter were coming the next day so I was able to ask them to collect and bring my robes. 

The reason, not that I need one, for all this is because as I was finishing off packing I had a call from the hospital to tell me a I covid again. Oh my days. I’d already had it for nearly 3 weeks at that point. Needless to say the Covid and the forgetfulness did not put me off my stride and the funeral went very well with lots of laughter as well as tears. Lynn I think Joe would’ve been calling me a silly mare and laughing at my predicament. However I pulled it off and none of you guys knew anything about it. 

Onwards and upwards. Let’s see what today’s blood test and swab shows. Who knows maybe it’s bubonic plaque knowing my luck. I shall keep smiling anyway as it makes everyone wonder what I’ve been up to. 

Have a good day folks.

World Cancer Day 24

Today is world cancer day so I decided it was about time I wrote another blog. 

Life has been even more of a roller coaster these last months. Regular readers will know I went to Ireland in July and despite all my precautions I contracted covid for the first time. As a former scout leader I took the “be prepared” motto to heart and had made contact with Cork haematology department before I travelled so when I had the positive test I contacted them, who in turn contacted Kings. I was prescribed the specialist antiviral treatment that clinically extremely vulnerable people need. It made me feel better for the course of the treatment and by the end I was testing negative. As soon as I finished, I started testing positive again. This went on from July to November. Talk about long covid! 

I then had about two to three weeks of being negative when I ended up with rhinovirus. The lovely team at Kings kept me on a short leash and checked me weekly. The following week I felt rough. By then I had another dose of covid and a bacterial pseudomonas on top of that. The following week the doctor told me I also had influenza A alongside everything else. I just laughed which made him laugh too. The lab couldn’t believe it either. I continued to test positive up to 2 weeks ago and then within days of the negative swab I got that scratchy feeling in the back of my throat. My head then filled up with snot again and I’m still like that now with a horrible cough to boot. All I can do is shake my head in disbelief. 

Despite all that, I still function, of sorts, and I keep smiling. People ask me how I do it? My reply is always “it beats the alternative.”  Fiona was a good long term MDS friend. She sadly died last year after her transplant failed. Andy, another MDS stalwart died recently and I was fortunate to be able to attend his funeral this week. Both of them were my age! I’ve taken several funerals recently. One of them was for a woman younger than me. There is a Chinese quote that says “you’re a long time dead!” Thats why I continue to count my blessings. I also consider myself very fortunate to have such a good team around me, who I know, always have my best interests at heart. When I think about the horror in Gaza with no working hospitals now, it makes me weep. On the flip side of that I hear from people in America who can’t afford their treatment and again, I count myself lucky. 

My wonderful medics and support staff have been on top form this week. I had some very confusing messages from the physio dept. One lot were giving me appointments and the other set of messages were saying I hadn’t been in touch and would be removed from the waiting list if I know longer needed the appointment. I emailed in to express my confusing and was at a loss to explain it. I then had a call from an ace admin assistant who said she was going to “channel her best Sherlock Holmes” to get to the bottom of the perplexing mess. What she eventually discovered was that I has 2 referrals and they were both live! I told Carrie she was a credit to the NHS and thanked her for sorting it as I was feeling a bit of an eejit at not understanding. She was great. 

My next appointment was in the Haematology Assessment Unit. HAU is for the haematology patients who have an infection and need to be separated from the other vulnerable patients in the main outpatients area. The lovely Heather and Jellianne looked after me and did a very good job. Jellianne left Heather the challenge of cannulating me and laughed as she ran off.  Heather managed it first time which shows how skilled she is and I was given my intravenous Immunoglobulin. IVIG is given to patients with a certain deficit in white blood cells and the proteins needed to make antibodies. It’s an amazing gift of life given but altruistic strangers. The NHS Blood and Transplant Service collects antibodies from blood and plasma donations. Then loads and loads of these antibodies are mixed together and given to people like me who don’t produce good antibodies. This gives us a chance of fighting any infection that comes along. Without it, I’d be in a much worse condition. I am very grateful that the NHS funds me having this expensive treatment. Again I count my blessings.

The day after having my IVIG I was back at Kings having a Bubble Echo. Sounds weird eh? I had a recent heart CT after developing some chest pain. The scan showed there could be something called a Patent Foramen Ovale. An FPO is a hole between the left and right upper chambers of the heart. Everyone has this before birth. In some people it doesn’t shut properly or can open up. It is not something screened for as, in general, it doesn’t cause any problems. The most serious complication is that it can cause a stroke. As I had a slight stroke in 2021 and then they saw this slight anomaly on my CT, they decided to do this bubble echo test. I met a couple of lovely cardiology physiologists. They were ace. Sadly I didn’t get their names. The first trial for them was to cannulate me. After 23 years of being stabbed millions of times my veins are small, wriggly and scarred. Even some haematology nurses look busy when they see me coming as I mentioned earlier. Lol. Fortunately I don’t mind needles. The woman doing the cannula took her time and had to dig around a bit but was successful on the first go. This doesn’t always happen, so all power to her. Then what they do it get two syringes and one of those tap valves that meant they could swish the saline mixed with some of my blood back and forth so it gets lots of tiny bubbles in it. Then they inject it and within 2 seconds its travelling through the heart. If the PFO is bad you will see the bubbles crossing the hole. Mine wasn’t bad at all and is unlikely to need more intervention but I still have to wait for the full report after the details of the scan are analysed. 

During the course of all these treatments and viral and bacterial infections, my blood counts have been very unpredictable. It seems my system often crashes when I pick up an infection. This is why I have to be so careful not to be close to people with coughs and colds. Over the last few months I’ve needed blood and platelet transfusions. At times I’ve had to give myself daily injections into the stomach. Where I’m blessed is I don’t question that these things will be available to me. I know I have this amazing safety net. I know one day my body will conk out but while I can still enjoy life and find a way to contribute and interact with the wider world, I’m going alright. 

On Tuesday I am taking the funeral service for Maggie’s cousin. Joe battled 3 types of cancer but kept his wicked sense of humour. I hope he will be smiling at us as we say goodbye to him. On this World Cancer Day, I shall honour Joe, Fiona, Andy, Diana, Marlene, Bette and all those who a cure was not found for. I also send my love and respect to all those living with cancer and the effects of treatment. I’ll finish with a couple of World Cancer Day quotes which goes with their theme “Together we are stronger than cancer”

“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” Orison Swett Marden

“Cancer opens many doors. One of the most important is to your own heart” Greg Anderson 

Badly timed blip

There’s never a good time to have a blip but some times are better than others. In the build up to Christmas you really need to be on your A game in order to do all the extra things that are an expression of love. 

I’ve been having a bit of an extended blip but I’ve had some lovely things going on too. This image is from St Peter’s Chapel at Bradwell-on-sea. My lovely old parish choir started going to Othona 25 years ago. Othona is a Christian community that is very inclusive and welcoming. I was there at that first weekend 25 years ago. Simon, the choir trainer asked me to take a service of celebrating our unique choir community and all that have gone before us, whose voices we still hear echoing as we sing. 

It was so good to have a creative liturgy to write for this special occasion. 

St Peter’s 

Around this time I also took a funeral for someone I didn’t know where the family were struggling. The woman died in August and she was younger than me. It’s tough to have to wait till November to be able to go ahead with the funeral. I was glad I could help. 

Another aspect of life that has given me much pleasure this year has been being able to have my grandchildren over to decorate the tree. I always did this with my daughter, their mum and she remembers it fondly. When she came to collect them I hadn’t quite finished outside. It was lovely to have all 3 generations putting together the outside tree. 

 

All of this was made possible by the fact that I had Covid from July to Nov and it didn’t kill me! 

Now we move on to the blip. My routine money blood test showed that I’d become profoundly neutropenic. This was 5 Dec. I told the consultant I had a scratchy throat. Swabs were taken and it showed I had flu and covid. I sure know how to have a good time! The consultant asked me to come back the following week. 

In the intervening week I developed a temp. One night I woke up and went to the loo and couldn’t stop shaking even when I got back into bed. I kept spiking temperatures which settled with paracetamol. Then I had awful face, and jaw pain and a horrible headache. It seems I have developed sinusitis. The pain was waking me up at night. It was horrible. 

The next blood test showed I was more neutropenic and my platelets were on 19. This is why I’m so bruised. It also showed my CRP was 155. That’s very high and is a marker of infection and inflammation. I was given a strong course of antibiotics which I’m halfway through now. It definitely improved the face and jaw pain but I still wake up with a headache and I’m still very snotty, which comes in a range of colours. Urgh! 

On top of all this I was told by the ophthalmologists that I needed to have my cataract done. Regular readers will know that worries me more than any other thing. I have bone marrow biopsies with no sedation and no anxiety but because I’ve only got one good eye, I’m very protective of it. The problem is it’s getting really hard to drive at night and my hospital appointments are long. I often drive home in the dark. The consultant has decided it can be done as a priority. I will also have a senior surgeon doing the procedure because of my complicated medical history and the fact that only my right eye works. It will all be done during the next 6 months. Please pray or keep everything crossed for me. The picture is the drops I had to assess my eye health.

So coming up to date; today’s bloods show a neutrophil count of 0. My platelets are now 11 and my Haemoglobin is 80. I need platelets and blood. I also still have flu, covid and a pseudomonas infection. Oh dear! That’s a bit pants just before Christmas. I’m gonna have a top up of platelets today and I have to come back tomorrow for some blood. They also may want to keep me in for a few days to give me some IV antibiotics. They will decide on that overnight. 

Despite all that I’m keeping in good spirits. I’m just a bit weakened and even more frail than normal. 

I’m really pleased I managed to get the Christmas decs up. At least I have beautiful twinkly lights to look at each night. 

I hope wherever you are and whatever you are carrying inside of yourself or struggling with, that you find some hope and peace and light in the darkness. 

Merry Christmas Xx

The gift of life in the form of a bag of platelets 

An early Christmas pressie to keep me alive. A bag of nice juicy lifesaving red cells 

All Types Can Save Lives!

One of the things I’d hoped for after having my bone marrow transplant was that I would get my active life back and I would be able to ditch my chest of medicines and medical appointments. Sadly that didn’t happen.  I take more medicines now than I ever have. I had also hoped that I would have less visits to the hospital. That hasn’t worked out either. Sometimes I’m still there weekly. The biggest gap I have is a month between appointments. It may not be the life I’d hoped for but the fact that I’m still here is a miracle! For that I am very grateful. 

One of the reasons why I only have a months gap between appointments is because I have a specialist treatment called IVIG (intravenous immunoglobulins) This treatment gives me some antibodies that I’m lacking in order to be able to fight infection. Before I had the treatment I kept picking up various infections. I would have my flu jab every year but still managed to get flu every flu season. One year I had two flu infections at the same time. The infections often ended up with me needing a lengthy hospital stay. I remember one time when I had pneumonia, it took me 45mins to make my bed. I’m a stubborn bugger! 

IVIG is an expensive but valuable treatment. It saves lives including mine. It’s made by collecting antibodies from wonderful blood and plasma donors. Antibodies are developed when healthy people come into contact with infection. They are part of the immune systems healthy response. Due to all the treatment I’ve had, I don’t have this response. 

When someone donates blood, that donation can be used to help three people.  Each blood donation is broken down into its separate component parts using a centrifuge. Red blood cells, plasma, or platelets are extracted using specialised machines.

People can also donate plasma. That takes a little longer than a blood donation. Plasma is taken and red cells are given back all done by a clever machine that spins to separate the good stuff. This process takes about an hour.

Plasma is the part of your blood that carries platelets, red blood cells and white blood cells around the body. Plasma makes up approximately 55% of your blood, and contains antibodies, known as immunoglobulins, which fight infection. These antibodies are made into medicines to help people with rare diseases, immune disorders and genetic conditions. By giving plasma you could help build a person's antibodies, help to heal burns, protect pregnancies, and help babies' hearts to continue to beat.

The NHS needs more plasma donors in Birmingham, Reading and London but many people don’t realise they could donate.

 

When they do come along, these amazing donors come from all walks of life and plasma is used to treat more than 50 diseases.

 

NHS Blood and Transplant is running the ‘All Types Can Save Lives’ campaign during November because many people don’t realise they could donate.

Plasma donation is similar to blood donation, except a machine next to the donor filters out the plasma. The donor then gets their red blood cells back, which means they can carry on with their day as normal.

As I finish this blog I want to give a big shout out to all the donors who have given blood or plasma.  You have saved my life over and over again. To you it’s just one day that is slightly disrupted. To me it gives me more time with my family. It gives me the chance to see my grandchildren grow up. It gives me the chance to put back into the system that has worked tirelessly to make me well. This thank you from me also comes from all those who know and love me. 

If this blog has moved you, maybe you could consider becoming a donor. How amazing would it feel to save a life? 

You can book an appointment at www.blood.co.uk/plasma

 

7th rebirthday.

 

Today is my 7th rebirthday. The photos show the transplant joinery through its highs and lows. It’s hard to believe that 7 years ago my little sis gave me the amazing gift of life in the form of her stem cells. Followers of my story, friends and family know it’s not been an easy road to travel and it still isn’t. The fact I’m still here though is amazing. 

I sometimes wonder why I’m here when so many great and good people have succumbed either to the MDS or the effects of treatment. It makes me look at life differently. I just don’t sweat the small stuff. I can smile at the beautiful sunset. Go out just to see the moon, watch the clouds and people walking by, enjoy the warmth of the sun and feel the gentle breeze on my face. I could go on but you get my drift I’m sure. 

Before all this, even though I already had the MDS, I used to take on life at break neck speed. If I needed to do a 12 or 14 hour day at work, I did. I also had my church commitments at the weekend where I’d often have a sermon to write or service to take. I neglected my family at times because I felt an enormous responsibility to do all the things I’d said I’d do. I have a strong Protestant work ethic and it’s not always a good thing. 

When I had my transplant, I thought I’d give up a year of my life and I’d get back to work. Today 7 years on I’m still nowhere near to being able to go to work. However I’ve let all those shoulds and coulds go. I live life more slowly. I have all the time in the world for my family. When life’s irritations come along I just think “well this is different” and I like different things. For example, my home currently has no heating or water due to a leaking pipe. It’s been this way for just over a week. I am wearing fleece lined snow trousers and 4 tops. The problem has been diagnosed now and we are just waiting to find out what the insurance are going to do. 

As you can imagine, we’ve had offers of help from family and friends, some of which we’ve taken up. It’s hard to stay too far away because we don’t know when and who are coming to sort this out. It’s further complicated by my partner starting jury service next week. Some people would be really stressing about all this. I just think “sh*t” happens and it will get better. I also know it’s a 1st world problem. If I had no way of keeping warm or getting water like those in exile, refugees of many nations, the Palestinians currently caught up in the conflict created by the terrorist actions of Hamas and an overly aggressive response that speaks more of vengeance than justice. Most Israelis and Palestinians yearning for peace. Why oh why can’t that voice be heard louder than the fear and warmongering? It puts my challenges into perspective and I never forget how blessed I am. 

This blog marks my 7th rebirthday but it also marks my commitment to live in peace with all that my body throws at me as well as strive for peace in the world and the thing about me is I’m foolish enough to believe I can do that and make a difference. Fancy joining me?