Tuesday, 19 June 2018

Balance in all things

I know it’s not everybody’s cup of tea but I love my football. It’s great seeing all the different cultures coming together in a common task of sport. One of the things I have always tried to do is pick up a football shirt from every country I’ve visited. Then during either the World Cup or the European Finals I wear the shirt of the country I’ve visited. So yesterday I wore the football tops of Mexico, Germany and Brazil. Today I will wear Belgium’s top and my England shirt later.

It’s all a good distraction because I’m actually feeling a bit pants to be honest. I keep going dizzy and sick and my blood pressure is fluctuating between too low and too high.

To make matters worse I am finally having my two ingrowing toenails dealt with. This problem was caused by the high dose chemo. Oh well, such is life. It will be good to have it over and done with.

I am hoping that the reason I feel so tired and lethargic is because they are still working on achieving the correct dose of thyroid medicine.

Another aspect contributing to my tiredness is my appetite is poor.  I’ve now lost 19kgms since the transplant. I don’t think the dietician will be too happy with me when she sees me.  I’m also not brilliant on my drinking either. Everything just tastes off or seems to have a weird texture. It’s a hard situation to live with and just hope that it improves.

Despite all these trials and tribulations I have lots of things to look forward to. I’m going to see an aunt soon who I haven’t seen in ages, as well as catch up with my uncle and cousin. The older you get the more you realise how special it is to spend time with family old and new.

I also have a nice weekend shortly singing at Bath Abbey with The New Gloriana Choir. Really looking forward to my 3 nights away with them.

Finally I have a reunion with my old Parish choir coming up. We are going to have a meal together then do some singing and finish with Choral Evensong. I’ve been asked to sing the office. I’m looking forward to seeing so many of the old faces and the kids that have now got kids themselves.

Balance is key is all things. As you can see I try to keep a balance of good things and treats alongside hospital visits and procedures. Now I’m going to have to be brilliant at balancing when I have a bath. I already can’t lay in the bath because of my Hickman Line. Now I can’t get my toes wet for 6-8 weeks. This will require some contortions that I’m not sure I’m up to any more. Lol. Life hey? You might as well keep laughing.

Monday, 11 June 2018

Fragile but still feisty

There are some weeks when I can’t decide if it’s a good or not so good week. Does that ever happen to you? 

Last weekend was nice. It was my brother-in-laws 50th birthday. We all had a lovely time celebrating. I even had a little dance with my sisters as I was still feeling the benefits of my blood transfusion. 

Then it was as back to more routine matters. The week started with a visit to the haematology team. I saw my lovely consultant who I haven’t seen for a while. She’s an amazing woman and just ran The London Marathon for the MDS UK Patient Support Group. What a star. Any way, she picked up that I needed another lung function test. She also reviewed my recent heart scan. Apparently both valves are leaking slightly but that’s not worrying her. What concerned her is that the pressure was highly in the top right hand side of my heart. She said it could be my line, in which case it will need to be changed but whatever it is it will need investigating. 

So I find myself being referred to yet another specialist to be prodded and poked at some point in the future. I don’t know what to make of it all really. I guess all I can do is keep processing it and it will eventually sit quietly inside m alongside the long list of other bits of me that no longer work properly since my heavy Chemo pre-transplant. 

The other thing she told me is that I will need an endoscopy. This is where you swallow the camera. She wants some biopsies taken from where my stomach goes into my duodenum. Apparently that area showed inflammation on my recent PET scan so she wants it looked into. Those things are horrible. I’ve had so many. I will try and remember to smile for the camera.  

I’ve got my usual 2 days of ECP on Weds and Thurs this week and I approach it feeling slightly frail. I’ve now lost 17 kilos since the transplant. My appetite is very sporadic and quite small. Some days, like today, I can’t be far from the loo either. My kidneys are struggling to cope with it all. I’m also not at the right level for my levothyroxine yet and I’m sure the symptoms from my under active thyroid are contributing to my general feeling of malaise. 

You would never imagine that itchy skin could drive you to tears but that was the case for me the other day. I put on all the lotions and potions they tell me to, as well as take the medication but every now and then, it gets really bad. Combination of maybe a touch of GVHD, the awful dry skin you get post transplant and the under active thyroid. In the end I crave sleep knowing that if I scratch in my sleep I’ll make it much worse and wake myself up. 

Despite all these challenges I love spending time with my family and friends. It gives me a real boost to do something ordinary. Recently 7 of us went to see Star Wars - Solo. I’m planning on catching up with other friends over the summer too. 

I’m also flexing my grey matter a bit. I’m doing a service a month in the parish of All Saint’s Maidstone with St Phillip and St Stephen.  I’m looking forward to getting to know the people and having to be spiritually disciplined and write sermons again. Another plan is to be part of the Day Chaplains Team at Canterbury Cathedral. It will be so good to be exercising some sort of regular ministry again. It’s been too long.

Wherever you are and whatever you are doing may you find comfort in the darkness and happiness in the light and love of friends, family and strangers. Xx

Monday, 28 May 2018

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

Tuesday, 22 May 2018

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.

Wednesday, 9 May 2018

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

Friday, 27 April 2018

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. 

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.