Tuesday, 3 April 2018

Rebel Rev goes back to school

When I very first started this blog it was about my experiences as a hospital chaplain in a busy London hospital. To protect the patients and their relatives I wrote anonymously. 

As the years have gone by and I finished my work in the hospital, it became a platform for me to talk about the realities of living with cancer and it’s treatment. 

One of the things I’ve realised is that I’ve never written anything about my many years as a school chaplain. I think I should redress that. 

I have been fortunate to work in two very different schools. One was an all girls school. This was a very established Church of England school and was over subscribed due to OFSTED rating it as outstanding. While I worked there I also looked after a local parish. The parish consisted of a large inner city council estate. This split role job in essence involved me working with three distinct communities. The school, the estate and surrounding community and the church congregation. At times I felt pulled in so many different directions with lots of competing demands. The work was tough and the hours were long. 

I remember when I first arrived feeling very bereft. I had loved my role as a hospital chaplain. I found the lack of structure for the parish side quite difficult initially. I had not built up the relationships yet so spent lots of time wondering what to do next. The school was better and had a rhythm to it. My very first day in the school was an INSET day, in other words a staff training day, so no students. During the headteachers presentation all of a sudden was this heart stopping scream and a member of staff ran from the hall. I followed the commotion and asked if I could help. The headteacher told me it was ok and she would deal with it. 

It turned out that the member of staff had just received a text saying her dad, who was in hospital, had taken a turn for the worst and wasn’t expected to live for very long. 

I hadn’t expected high drama in this way and thought I’d left that behind with the change from hospital to school. In the hospital environment whenever there was a tragedy, the first person to be called was the chaplain.  Schools don’t work like that. They are very hierarchical and also fairly splintered into different departments and levels of seniority. It seemed the head teacher would decide if I had a role to play and I would have to wait to be invited in. This was really foreign to me and took some getting used to. 

As it turned out the man who was ill survived a little while longer. During this time I built up a relationship with the member of staff and the head who happened to be very good friends with the wife of the ill man. I visited the family many times over the next few months and supported them through those awful early days of their bereavement. It seems my time as a hospital chaplain would be useful to school chaplaincy. 

The second school I worked at was a mixed school and was out in Kent. Very different from inner city London. The school had previously been considered by the local authority to be a failing school. As a result it was decided it would have to become an Academy. The sponsor that won the bid to run the Academy was a Christian based group. They had a huge established history of running fee paying schools and had decided to branch out into the State System. 

This particular school hadn’t previously been a school with any sort of Christian ethos. They were after a chaplain who could work with the same kids, staff, parents/carers and governors who hadn’t asked for God to be involved in their education process, to suddenly being classified as a Church school. It was a big ask for them and for me who had been headhunted for the job. 

On the day I went to look around the school, the deputy head got this year 10 boy out of his lesson to talk to me. Apparently he had been very vocal about it not becoming a Christian Academy. I asked this lad what he was worried about and he just shrugged at me. I tried again and said what did he think the problem was and he said “I dunno mam” I tried another tack and asked him if he liked motorbikes. He enthusiastically nodded. I told him my last bike was an SV650 Suzuki. His eyes widened a bit. I then asked him what football team he supported and he told me Man U. I then teased him and said he only liked them because they were a top premiership team. I said if he really wanted to watch some good football he should follow the women’s game because that was played for the love of the sport and not the big bucks of the men’s game that had ruined the sport. I then told him that I had played for Millwall and Charlton. I then tried again to ask him what he was worried about from the school becoming a Christian Community and what was he expecting. As quick as a flash he said “not you” and then we both laughed. From that point on we got on like a house on fire. 


Over lunch the deputy head introduced me to a year 7 student who over the course of the recent half term had witnessed his friend fall in a river and be swept away to his death. I had a bit of a chat with the lad and sowed some seeds in the hope he may talk to me once I formally started. He seemed to be very shut down and closed off about it all. It seemed that school chaplaincy was going to be just as tough as hospital chaplaincy at times. 

Tuesday, 20 March 2018

Broken crayons still colour

It’s been a weird few months. To recap, I’d been having a rough spell with lots of stomach pains after eating. Then I picked up an obscure virus called RSV. I started taking loads of extra antivirals and they made me feel sick so I wasn’t eating so much. That made the pain lessen, so swings and roundabouts. I then picked up another virus and had to be admitted to hospital for 5 days. This time I was put in 2 lots of strong antibiotics. Once I was well enough to come home these were swapped to oral antibiotics. Sadly these made me very nauseous and in the end I was throwing up every night.

After the antibiotics finished, my appetite stayed low and I lost weight. I ended up battling to get my medication into me. It was horrible. My lovely medical team increased my steroids. I was pleased that I’d managed to stop one of the steroids but sadly this was short lived.

The steroids increased my appetite and made me feel better, although they also make me feel shaky and weak. I also started to get the tummy pains again as my appetite increased. It’s like you can’t win.

I’m laying in bed with a hot pack on my stomach and wondering what’s worse, not eating or pain after you eat?

It’s hard being left with all these chronic health problems. I had hoped for a cure for my cancer and that I’d regain the life that had slowly been eroded from me over the last 17 years. I’m now 18 months post transplant and life is still a daily struggle.

One thing I do know is I wouldn’t be here without the gift of life from my sister. Her stem cells maybe fighting with mine but at least they are keeping me alive. I also know that not everyone makes it this far, so for that I am grateful.

What I have to work out is what I can still do these days that give me life. I need fun and laughter and mischief to get up to as well as hospital appointments, duvet days and medication. For me it’s also important I feel useful and that I can still make a difference and contribute to society. I recently took my aunts funeral and I have a friends funeral to take next week too. I continue to do my audio blog with BBC Radio Kent. Next month I am singing with my old choir at St George’s Chapel Windsor. That will be an amazing experience. That’s why I love the attached quote that broken crayons still colour. You don’t have to be perfect to make your mark on the world, you just have to be determined and to have a never give up attitude.

I hope wherever you are and whatever you are up to you are able to do something that brings life to you and to those around you.

Wednesday, 7 March 2018

Sometimes all you can do is grit your teeth

Sometimes I just don’t know what to say in this blog. I try to remain upbeat most of the time because that is me. Some times this is hard though and today is one of those days.

Ever since I was admitted to hospital I have been struggling with my eating and drinking again. It seems to get a little easier and then goes really haywire again. Taking my tablets is now a daily battle. It’s currently 4.30pm and I have just finished taking my morning medication. What made it so much worse was one of my tablets didn’t go down when I swallowed and started to break up in my mouth. It tasted awful and this in turn made me start to heave.  It’s such a horrible feeling and the thought that I have to take a load more before I go to bed fills me with dread. I have tried milk, milk shakes, Coke, various juices and water. Currently nothing helps me swallow the blasted tablets.

I’m also not enjoying or fancying any food. Again every meal time is a battle. I so wish I had a magic wand sometimes. I want to be well but not eating and drinking and being unable to take all my medication is not going to help.

I feel very weak most of the time and so tired. It’s the kind of exhaustion that no matter how much sleep you’ve had you still feel shattered. If you can imagine having 9-10 hours sleep and waking up tired. Then having a nap and waking up tired again. Then sitting and watching TV in the evening and nodding off again. This goes on day in day out.

I’ve been getting fidgety because I haven’t been out. The snow has not helped but as today was warmer and the snow has cleared, I decided to get my mobility scooter out and go for a “walk” The thermometer said it was 9. It certainly didn’t feel like that. I had wanted to go to the shop but gave up half way and came home to the warm. I feel like I’m going backwards at the moment. I have no strength in my legs. It’s like my get up and go has got up and gone.

I really want to start getting up to mischief but I don’t have the energy. I really want to embrace the unfolding spring. I’d love to go on holiday somewhere warm. I also wish I could take my tablets easily and eat more normally.

I suppose all I can do for now is grin and bear it and hope that things improve soon.

Your thoughts, prayers and positivity are welcomed at this challenging time not only for me but for those closest to me too.

Thanks for sticking with me.

Sunday, 25 February 2018

I’m physically frail but a spiritual warrior.

The last few weeks have involved lots of me gritting my teeth.

I eventually stopped throwing up every evening but I was still spiking a temp. Sometimes it would go up to 37.9 but never over the magic 38 which is an automatic trip to hospital.

I’ve been really struggling to eat and drink and of course that in turn has made me feel extremely weak and fragile.

In the end I felt so awful I contacted the hospital. I went in for a review to the day unit. They were their usual brilliant selves. My long suffering partner managed to walk into a lamp post after dropping me at the main entrance. She phoned to tell me this and my lovely nurses said for her to come to the Unit and they would sort her out. They cleaned and dressed the wound and even got a dr to assess her. What a brilliant service. They are worth their weight in gold. She is now the proud owner of several steri-strips and a bit of a black eye. What an eejit! Lol.

Getting back to me, the bloods showed the infection and inflammation markers were coming down. Sadly my HB was also falling. The doctor thought I had reacted to the antibiotics and that made me feel bad on top of whatever virus I had. She wanted to see me again in a week.

Since I saw the doctor my temp has settled and I no longer have been having those spikes. I’m drinking better and have slowly increased my food intake. It’s still not back to normal yet but better than it was. I guess the dietician will have something to say in clinic this week.

One of the things that has persisted is very itchy skin. It drives me to distraction. If I dare scratch it, it makes it 10 times worse. I’m sure having to wear all these extra layers to keep warm isn’t helping. I’ve been given a tablet but it’s not helping. I wonder what on Earth is causing that.

I need to concentrate on getting my strength up because I’m as weak as a kitten. I also need to work on increasing my food intake. I’m working on the little and often method just now. That seems to be helping. It’s such a weird feeling when nothing tastes right and you just don’t fancy dinners. I still struggle to find drinks I like the taste of too. I’m very pleased I can drink water again but I can’t take my tablets with that because I can taste them. Every morning and evening is a real struggle to swallow a plateful of medication. I so can’t wait to reduce all this medication. I’m sure that will help with the nausea.

Before I had the transplant I was thinking about all the things I’d be able to do once I recovered from the transplant and got back to normal. Now I’m 16 months post transplant I’m wondering if I will ever feel normal again. It seems to be dragging on and on and on.

I guess the important thing is that I don’t lose hope and I keep going. I’m sure at some point things will change. In the meantime I have to be patient and just keep putting one foot in front of the other.

Thank you to all of you who are in my corner and who offer me words comfort and support. It means a lot and makes a difference. I may Be physically frail but I am a spiritual warrior. I might not be able to do loads but I can still listen and I can pray and I can hold hands and I have an endless supply of hugs. As you think of me, do let me know if I can do anything for you.

Saturday, 10 February 2018

Saved by the NHS again...

Hi Everyone,

Isn’t it wonderful that the days are getting longer? 

I’ve had a very strange week. Since my last post I’ve spent 5 days in hospital. It all started at 3am on Sunday night. I woke up with an awful headache and even though I know I shouldn’t take anti-inflammatory drugs, I took some Ibuprofen. At 6.30am I was desperate enough to take one of my partners migraine tablets. 2 hours later I took another. I felt dreadful. My head was pounding and I also felt like I had a vice around my chest. The pain was really intense and went into my shoulder and up into my jaw. It was made worse by breathing in. 

Of course when my partner rang my haematology team for some advice, they said we had to ring an ambulance. We did this even though I objected and said it wasn’t necessary. When the paramedics arrived, they were a lovely team. They did an ECG and,  as I thought, discovered I wasn’t having a heart attack. My BP was sky high though at 185/95. I’m usually a 90/60 person but it’s been creeping up because of the ciclosporine and steroids I take. A couple of weeks ago I was started on some low dose blood pressure medication but obviously the pain I was in was pushing it up again. 

The paramedics said I needed to be seen and they would take me to the local hospital. I said I’d rather go to the team that looked after me and would go with my partner to Kings in the car. 

The wonderful paramedics phoned Kings and spoke to my team and said they were happy for me to travel in the car as long as Kings were happy too. So that’s what I did. 

When I arrived I was told I would need to be admitted. Fortunately I was taken back to the ward where I had my transplant. The fantastic staff on Davidson Ward made me really welcome. Sadly I was feeling so crap I couldn’t talk to them properly. My head was still burning and pounding and my shoulder and chest still hurt. Also my tinnitus was going wild in my ears. 

Again in the middle of the night I got worse and I started to throw up. The staff had to give me IV anti-sickness to give me some relief. By the next morning I began to feel human again. I saw the amazing Austin. He is a wonderful doctor but doesn’t do the post transplant clinic so I don’t see him so often these days. He told me that my infection and inflammation markers were high. He arranged a chest and shoulder xray and a CT scan. He also started some high dose IV antibiotics. They make you feel really sick but are a necessary evil. 

The CT scan showed some damage from the recent virus I’d had and signs of active virus. The shoulder scan just showed arthritis but they wanted to do an MRI in case anything had been missed. 

Austin also wanted a rheumatology opinion on what could be going on. Fortunately I had an outpatients app booked for Friday any way. 

During the course of the week my HB was dropping like a stone even though I’d only had a blood transfusion a couple of days before I came in. In the end I had to have another blood transfusion. 

I saw the rheumatologist, who was a new consultant to me, hailing from Limerick. He was quiet and thoughtful and very thorough. So often doctors are stuck in their own specialism and think that’s the world. What impressed me about this man was that he said he would liaise with Austin as he didn’t want to put me through unnecessary tests. How refreshing is that? He said he thought it might be worth doing a PET scan and some specialist blood tests. He also said there was a lot of inflammation going on and def something autoimmune. He wasn’t clear what it was but was willing and happy to work with Austin to see if they could put together the pieces of the puzzle. I was really pleased by this response. 

Back on the ward the lovely Ionna was waiting for me. She is Austin’s junior doctor and comes from Greece. Thank goodness for our EU workers. She was very apologetic but said she had to do another bone marrow biopsy. She said not to worry as she had a lot of local anaesthetic with her. We both laughed. I said to her that one day we would say “how barbaric” about the way we take bone marrow samples. She agreed and said she hated doing them as she knew how much they hurt. 

Despite giving me lots of local, the biopsy was really hurting, lots more than normal. Ionna was great she kept putting in more local and giving it time to work. I said “don’t worry I’ll just grit my teeth as I’m used to it” She was horrified at this suggestion. She said maybe because there was so much inflammation in my body was the reason for the extra pain. Eventually she got the right spot and got her sample. It bled lots and has been extra painful over these last 24 hours. I’m sure it will calm down. 

That same day I also saw an oral medicine specialist to advise on the sores in my mouth and the exceptionally dry lips. I saw 2 doctors in that department and they both gave me the same advice so I’m hoping that will help. 

The final test was another lung function test to see if the damage to my lungs had gotten any worse and if it could be reversed in any way. 

I’m now happily back home and having a duvet day. I’m back to the haematology clinic on Tues but have a gut CT booked on Monday. I then have ECP Weds and Thurs. Finally a pre op assessment for my ingrowing tie nail which is a complication of the transplant on Friday. 

I have extra antibiotics to take for a week and the medics will reassess what to do next once some of the results are in.  

Wow what a lot of attention from the NHS which was working at its finest. Thank you so much to all the fantastic nurses and doctors and support staff who helped get me back on my feet. You deserve far more recognition than this blog can give you. 

If you see good practice people, please do say so. We are often so quick to complain and more reticent to compliment. Our NHS and it’s embattled workers need our support at this time. They do such an amazing job under such difficult circumstances. Let’s big them up. 3 cheers for the NHS and thank you. 

You are one in a million. 

Wednesday, 31 January 2018

Poor old Rebel Rev deals with more post transplant problems

Well this weeks clinic appointment was a real humdinger. 

1. It seems I’m growing more anaemic so I’ve been started on epo injections. Apparently my natural epo levels are so low to be almost not present. It’s a hormone secreted by the kidneys which tells stem cells to become red cells. 

2. My neutrophils are raised and my chest is wheezy so the doctor thinks I may have a secondary bacterial infection caused by having RSV. He has put me on extra antibiotics on top of the extra antivirals. He also arranged another lung function test. If this shows a further reduction in lung capacity then I will have to take more steroids. FFS! Let’s hope it doesn’t come to that. 

3. My immunoglobulin levels are low so I have to have an IVIG infusion over a few hours on Friday after I’ve had ECP. This could be a post transplant problem or because of infection. 

4. My B12 is still low. I have to have 2 injections a week for a while, then it drops to fortnightly and finally to monthly. At least this can be done at my GP’s.  

5. Having had low blood pressure all my life, so much so that nurses wake me in the night when they take my obs because it’s gone so low, I now find myself having to take blood pressure medication. It seems the other medication has caused this. Oh what joy! The epo injections may push it up more too so I’ve no choice but to take yet another pill. 

6. Did you know that ingrowing tow nails are a side effect of having had a transplant? No, me neither. I’ve been booked in for a couple of months for mine to be sorted. That gives them time to get my anaemia a bit better and for this infection to have cleared up. 

Wow. It’s so hard to keep up with it all. Sometimes I leave appointments with my head spinning. This week I also left with an A4 sheet of the plan for the next few weeks. 

Life is never boring with MDS. Sometimes I think nothing will surprise me but I will admit to being shocked this week at the extent of additional problems going on. I will continue to grit my teeth and get through it all as best I can. I’m sorry not to have better news for you all. At least the sun was shining today and we were also treated to a super moon. I guess I’m going through a period in my life where I am walking by the gentle light of the moon and I’m looking at the stars. Eventually I hope to step back out into the warmth and love of the sun. 


Wherever you are and whatever you are doing I wish you well and many beautiful moments of light punctuating the darkness. 

Tuesday, 30 January 2018

Nothing not even cancer or death can stop love

Hello Everyone,

Well my cold turns out to be Respiratory Syncytial Virus Infection. (RSV). From reading up on it, it mainly affects babies, older folk in care homes and people like me with compromised or suppressed immune systems. My consultant sent me an email with the good news and said I would have to take some extra antivirals for 2 weeks. I’ve been prescribed Ribavirin.

When I took the prescription to the hospital pharmacy I was told the prescription was wrong as the dose was too high for someone of my weight and in fact was twice as much. I suggested the pharmacist contacted the on call haematologist which he did. She told him that was the correct dose for treating someone post transplant. I’m always glad to oblige and help people learn something new.

The tablets are disgusting. They are only small but they have a powerful effect and I am feeling extra nauseous.

I also had to collect a bowel permeability test. This measures the amount of inflammation in my gut. It involves drinking a syrup first thing in the morning then collecting every bit of urine for the next 5 hours. I have to fast from the night before until 3 hours into the test. The problem will be trying to fit 3 doses of the antivirals that day because they have to be taken with food.

It’s a never ending job keeping up with all these bits and pieces. You have to be highly organised and that’s just remembering all the appointments. This week I have an appointment on Tues, Weds and Thurs. I have a CT booked for the week after next. The week after that I have an extra appointment with an oral medicine specialist and a rheumatologist. I’m waiting to see a physio and a gastroendocrinologist. This is on top of 2 days every fortnight in the Guys Cancer Centre and being seen by the haematologist every 2 weeks. ‘Tis a real challenge fitting in any “normal” time  as well as all these appointments. However I still do and I’ve had a nice birthday and also been out to celebrate my gorgeous nieces 18th birthday.

In honour of my birthday, if any of you feel so moved and have a little spare cash, you may like to donate to the small charity that supports people with my rare cancer. It does an incredible amount of good nationally for people, who like me, have had to make this enormous change in our lives as we learn to live differently.

http://uk.virginmoneygiving.com/SomeoneSpecial/RebelrevfightsMDS

I’m proud of my little sis Gail and her husband Jeff for raising such an amazing young woman. She is such a credit to you. Looking forward to seeing you all on the official birthday of Tuesday. Was nice to spend some social time with my big sis Dawn Marsh and her two eldest Danny and Karen

Before I sign off I’d like to say I’m thinking of my lovely Aunt Vena who is really sick in hospital and my cousin’s who are keeping a bedside vigil. Shelley, Kim, Deborah, Mark and Steve you are a credit to your mum and she loves you all so much. You could feel the love in the air this afternoon. Don’t you ever forget that love doesn’t die. People do but love continues.