World Blood Cancer Day 2018

Well it’s been a week of contrasts for me. My long suffering partner went away with a friend for a week of R&R. I decided that while they we gone I would try and get out large hallway and spare room decorated. I put a shout out for help to my close friends and family and some very special people came and over the course of 7 days my house was transformed. I have some amazing people in my life. 

The week didn’t start well though. I had a Macmillan Unit appointment at my local hospital and was told my HB, red blood cells, had plummeted again and I needed a blood transfusion. So the next day I went back and received the gift of life from 2 altruistic strangers in the form of two bags of nice and juicy red cells. 

It’s weird thing that when you are so used to your blood counts being low that you don’t notice you only have half the blood of everyone else. Once you receive the transfusion though, you suddenly have all this energy. 

I want to say a huge thank you to all those people who made a difference to my life this week. You are an amazing bunch. I’d also like to encourage everyone to consider becoming blood donors and stem cell donors. #DKMS and #AnthonyNolanTrust have some great info about going on the registry and #MDSUK and Patient Liaison Sophie have loads of great resources about my rare blood cancer. Also #givebloodnhs will tell you about how easy it is to donate blood. 

Today is World Blood Cancer Day #WBCD and what a great day to acknowledge that and all who suffer or haven’t made it, I dedicate this post to them and all our supporters especially Gail Dawn Sally Jane Tina and Alan, Deborah and Barry, Mark, Annie, Keith,Tony and Maggie

Life saving blood saves Rebel Rev again

I had an interesting encounter yesterday. I met a new doctor to me at my local hospital. He is a haematology registrar and obviously likes to work out. He had muscles upon muscles. More importantly he was a nice bloke and very thorough in what he was doing.

My HB, that stands for haemoglobin which are the red cells, has gone low again. He told me I needed a couple of units of blood and he arranged for me to have them today.

He also said to me “so you have a heart problem” I said “not that I was aware of” We talked through all the bits and bobs that aren’t working so well and the things that are good too. He asked me why I was still needing blood and why my counts were still dropping. I said I didn’t know but that it keeps happening and that my last biopsy showed my bone marrow continues to be hypocellullar. He said “so the transplant hasn’t worked” I said that no one had said that but I have been told I need a close eye kept on and another repeat bone marrow biopsy in 3 months.

It’s strange when you see yourself through someone else’s eyes. It is odd that my red cells are still so troublesome and that I continue to need blood transfusions. It’s good that my platelets are holding up and my white cells are ok bearing in mind I’m still taking immunosuppressive drugs because of the graft verses host disease.

When you have blood you have to have your ob’s taken every 15 minutes. The first set of obs were taken by a friendly but matter of fact Eastern European nurse. She asked me if I had asthma or a heart condition. I said why and she said my Sats were only 95. I said maybe it’s because I need some blood. They’ve since come up to 96 which is still a bit low. Oh well that’s life!

I guess one day it will all become clear. In the meantime I am incredibly grateful for our NHS which continues to keep me alive and the wonderful women and men who work in this magnificent institution. I am blessed to live in a country with so many dedicated people and a health system that is free. Imagine how even more fantastic our NHS would be if it was properly funded. Let’s make sure we praise the dedicated men and women who do so much good in the world. I owe you my life and could never repay you for that.

Smile for the camera!

Well I’ve had an interesting day. I had to have a PET CT scan. This meant driving through rush hour London to get to the hospital for 9.30am. Once I’d checked it I was quickly taken round to a tiny curtained room with a reclining chair in it. I was given some medicine through my Hickman Line. They tell you there’s nothing to worry about but I did look twice at the metal box with the nuclear sign on it. Lol! After they injected the radio active ingredient I was told to rest quietly for an hour. I was not allowed to read or listen to music. This is because it will make the radio active stuff stick to the tissues I am using and stimulating and they want an image of how the tissues are when not stressed. So I dozed for a while.

I was soon on the scanner room. The scanner is a cross between a MRI tunnel and the CT doughnut. My head was held still by a contoured pillow and a band was placed across my forehead to stop me moving. I also had a wide belt strap my body down. They gave me a blanket because the room was cold but your arms have to be resting above your head. It was really hard not to shiver. It was also hard not to scratch.

The scan lasted about 25mins. After they asked me to wait while they checked the images. After 15 mins I went and reminded them I was still sitting there and they said I could go. I should get the results in a few weeks when I see the rheumatologist, earlier if there’s a problem.

Yesterday I saw the haematologist. That was a mixed bag. Regular readers will know I had a blood transfusion last week. That pushed my count up and I was able to continue with my ECP. Sadly I discovered yesterday that my counts have fallen again. They don’t know why this keeps happening. My EPO injections have been increased in strength in a bid to boost the number of red cells I have.  At present the epo I produce remains low. He also told me my immune system is low too and I will need some infusions for that if it carries on. They will continue to keep a close eye and may do another bone marrow biopsy in 3 months.

The good news is that my liver and kidneys are slightly better and everything  else remains much the same.

As he has increased my epo injections, the doctor also increased my blood pressure meds. I told him the thyroxine hadn’t improved my sleeping sickness and he doubled the dose of that too.

I nearly managed to sneak out without seeing the dietician. Lol. She was ok as I only lost 1/2 kilo this week. She is insisting on me trying a new supplement though. I’ll give it a go but no promises.

It’s all been a bit of a struggle lately. I really hope I start to feel better soon. Despite this I had a lovely weekend and enjoyed meeting up with my extended family and sitting outside in the warmth and fresh air.

I look forward to seeing many of you this week. Xx

Thanks for saving my life

Once again I need to say thank you to altruistic strangers for saving my life. Thank you for the gift of life in this bag of blood. Your donation made a 7 year girl very happy because I was there to see what she had leaned in gym club. You also made boys aged 10 & 12 happy because I can still give them football tips and watch them play. Their 14 year old brother is happy that I’m still here to discuss psychology with him because he has just started to study it for GCSE. 

When you give your 10 minute donation you are not just saving my life but having an impact on all those who love and care about me too. 

Bringing you up to date on my news I went away for a lovely week in Ireland. It was great to breathe some mountain air and chill out. Unfortunately we’d only been there one day and o got a cold. The problems of a low immune system and being in public. 

I contacted Kings and on their advice went to see the GP in the village to get some extra antibiotics. 

I arrived back last night and as requested went to Kings for a once over this morning. They gave me some blood otherwise I would have been too anaemic to have ECP next week. They also gave me a magnesium infusion. I’d forgotten how weird they make you feel. It’s like you are burning from the inside. Everything feels like it should be hot. It also makes you feel really heavy, like you’ve got a heavy weight bearing down on you. 

My kidney function is a little off at present and they have swabbed to work out what bug I’ve picked up. They will be in touch over the weekend or Monday with results from today to tell me what we’re dealing with and if there are any other precautions I need to take. 

Saw my Little Sis Gail Thompson tonight. Always good to catch up after a break. Thanks for the fish and chips. We toasted our Big Sis Dawn Marsh and wished her well in her recovery from a knee replacement. Painful days but hopefully worth it to get your mobility back. Love you both lots. 

I think a duvet day may be in store tomorrow. Lol. 

This post is dedicated to all you wonderful life savers out there. Thank you from the bottom of my heart. You are amazing. Keep being that way because as you can see from my post what you do makes a difference. 

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. 

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.

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.