Monday, 20 November 2017

Another awful bone martow biopsy.

So here’s my latest update. I was at Guys today for round 6 of ECP. Due to the problems with my line, my wonderful nurses had arranged for me to see a specialist line care practitioner. They were meant to arrive at 12.30 but turned up nearer 2pm. Sigh. She was nice, even though she didn’t apologise for keeping me waiting. She could only get one lumen working so the plan was to use that one and then put in the medical equivalent of Mr Muscle in my line overnight to see if it works tomorrow. I also have to have another chest X-ray in the morning. If that doesn’t work they are going to ask for permission to get this specialist drug to put in the line that is currently not available in the Trust. If that doesn’t work they have ordered another line where the tubing is not collapsible. At least there is a plan to follow. Let’s hope the Mr Muscle works and we don’t have to escalate it to any of the other levels. 

As you can see from the picture, my skin is really sensitive. I had a gentle scratch of my back, and I do mean gentle and this was the result! Oh my days. Maybe I’ll get a messages etched on it. 

Tomorrow as well as being day 2 of ECP, is also a dreaded bone marrow biopsy. I have to go to Kings for 10.30 to have the biopsy and then get over to Guys for x-ray and ECP at 12.30. Every MDS or blood cancer patient will tell you they hate bone marrow biopsies. They are a necessary evil. This is my one year check up to see how my cells or rather Gail’s cells are doing. Keep everything crossed for me. 

Whatever you are doing tomorrow I hope it’s more fun than I’m going to have. I will do my best to keep smiling though because it makes people wonder what you’ve been up to. 


Xx

Thursday, 9 November 2017

Prayer to St Jude

I want to start this post by saying I’m ok. I wish I could say I had some good news though. Sadly my Hickman Line is still not working!Those of you following my story will know this is the 3rd Line I’ve had inserted in the last few weeks.

Today I went for my 5th cycle of ECP treatment and the first time this line was used. Despite the best efforts of Ali and Anna who are fantastic nurses, the damned line would not work. They are completely perplexed and were going to email the great and the good for some advice as to what to do next.

It took a few attempts to cannulate me but eventually we were up and running. It took 2.5hrs to complete the treatment today which was good because we got away just before the rush hour.

As for my GVHD symptoms. I still have sores in my mouth. They are slowly getting better but occasionally flare. The paste and glue which goes on is really effective. My eyes are often dry and feel out of sorts. My guts really hurt most nights after eating. It’s a horrible pain but only lasts about an hour. I find a hot water bottle helps. My muscles and joints are still out of sorts. It’s like the skin is tight on my legs and I cant bend them properly. I also can’t make a fist in the mornings. When I get out of bed the ministry of funny walks kicks into action.

Despite all this I remain as cheerful as I can. I try to get out and do ordinary things. The other day I went to see the film Breathe. If you haven’t seen it, do make an effort. It’s inspirational. Absolutely amazing what the human spirit can endure and overcome.

I have met two brand new human beings in the form of William and Bonita and had some lovely cuddles.

One of the things frustrating me just now is loosing things. I guess it’s the last vestiges of chemo brain. The latest thing I’ve lost is my rather expensive car key. If you are the praying type please pray I find it. Maybe we need to evoke St Jude who is the patron saint of lost causes. Lol.

As the evenings close in it can be easy to only see the darkness. What helps me is knowing that it’s only when it’s dark that we can see the stars.

Sunday, 5 November 2017

Hobson’s Choice

My line is going several different colours. Let’s hope it works come Thurs when I have my next round of ECP.

Sometimes life is a bit of a Hobson’s Choice. What would you do in this situation?

For the last few weeks I’ve been getting really bad stomach ache. This is especially apparent in the evenings after I’ve eaten. I sit or lie down with a heat pad on my tummy to try and relieve the discomfort. It makes me feel sick and unwell for the hour or two that it lasts.

To treat it I was given extra steroids medication. I already take prednisalone but I’m now also taking budesonide which works more specifically on your gut lining. The problem is it makes me feel really shaky and my legs feel very weak. Steroids in general are bad for your bones and also really suppress your immunity. I’ve been on them in varying doses for 3 years.

I always try to cut back as soon as I can. I’ve started this weaning process but I have the gut ache again.

It’s so bloody annoying. Will see what the docs say next week. They will probably say the steroids have to go back up because they don’t want me loosing weight.

I’d just like a month in the Bahamas with no pain and no pills. It’s good to have a fantasy life. Lol.

At least I’m still here when so many others never made it this far. Thinking of those less fortunate than me and sending light and love to those who need it.

Monday, 30 October 2017

Revenge of the Hickman Line

So my day today was another barrel of laughs - not. The joys of living with cancer and it’s consequences. 

I had a light breakfast of a cuppa, some juice a load of tablets and a few biscuits. I arrived at Guys at 11am to have my linogramme. This involves having radioactive dye injected to see why my Hickman Line was not working properly. It meant going to theatre for the 4th time in 5 weeks. 

There was a long delay as the person that went in before me had a complication. At 2.45pm I asked if I could eat something. I was told no in case I needed sedation. I explained I never have sedation and I’m taking steroids and need to eat. Sadly patients aren’t treated as individuals and even though on the previous 3 occasions I hadn’t had sedation, the protocol says it’s a possibility, so I was not allowed any food or drink. This of course left me feeling really sick and pretty unwell and somewhat irritated. 

I was taken to theatre just before 5pm. The staff were lovely. The Drs were thorough and caring but could not understand why the line wasn’t working properly. They were reluctant to put in too much dye as my GFR is now down to 42 so the radioactivity is definitely not good for my ailing kidneys. 

The line was flushing well but they could not get blood out of either lumen. They pulled and pushed and twisted but the line would not behave. They told me it was sat perfectly in the right atrium and they could not understand why it wouldn’t work. 

The consultant went away and consulted the ECP team and some other colleagues. In the end they decided to put another line in. This one can take large volumes and is usually put in for dialysis when patients are sedated in ITU. 

Once more I was “attacked” by a swarm of bees in the form of the local anaesthetic. The dr was really apologetic. Then two Drs worked on releasing the old line and getting this much thicker one in place. Again they kept apologising as they knew it would be painful because of going along the same hole that had already been burrowed across my chest. They had hoped to be able to go in on the right side but that is still blocked from the trauma of the first line, which was the one that split after only a week. 

They managed to get this new line in and I was in theatre for over 1.45 mins this time. If this procedure runs smoothly it can be done in 30mins. Last time it took 2hrs. So at least it wasn’t quite as long as before. It’s such a weird feeling as these wires and tubes pass over your chest. Your heart starts beating erratically and the monitors start beeping and your breathing goes funny but it’s only short lived. 

I was finally allowed to eat something at 6.45pm. The lovely nurses even got me some extra chocolate. I got home by 8pm and was able to have my evening meal and another load of medication. 

A very long day for me and my poor long suffering partner. Medics have no idea of the huge impact all these hospital visits have. They only see what they have done and not all the other appointments. Don’t forget I was also in the previous thurs and fri. 

Tomorrow I start again. In the morning I have to drink some medicine and then not have any breakfast for 3hrs. After that I have to pee in a container for 5 hours. This is to check how my gut is working and if it’s absorbing the nutrients it needs. 

I then have to go to Kings and have another blood test and a consultation with the post transplant team to work out what we are going to do next with all my challenging symptoms. 

I hate the huge impact all these hospital visits have on my life and the lives of those around me. 

I am so grateful to the NHS and some of the wonderful staff who are keeping me alive. If I was American I know I’d be left to the scrap heap. It infuriates me that we are in many ways going down a more US style of medicine with the sneaky privatisation of our precious health service. Please fight to save it wherever you can as the thought is too scary of what will happen once it’s gone. 

The photos show my 3rd line, the stickers they forgot to take off and my wild post chemo curly hair. Lol. 

Let’s hope tomorrow runs more smoothly and I’m not at the hospital for so long. 


I’m very glad that I have some nice things to look forward to. If you want to add to the pleasant treats in my life get in touch. It’s important that there is a pain/pleasure balance in life and sadly mine has been a bit out of kilter lately. While I was laying under the theatre drapes I was thinking of all the lovely things they do with children and I was praying for Evie and Daisy to take my mind off what they were doing to me. It seems to me adults too need a little fun and mischief to keep their spirits up. Maybe I’ll start a mischief revolution. Want to join me? 

Wednesday, 25 October 2017

MDS World Awareness Day 17

As today is the world awareness day of my rare blood cancer, I thought I should write a little blog about the realities of living with this awful illness and it’s complications.

I was in my early 30’s and still playing football. I used to play out on the right wing because I was very fast. I noticed I was being caught up more often and was getting a bit out of breath. I put it down to getting older but the tiredness that started at that time persisted. I also seemed to bruise more easily.

I went off to see my GP who arranged some blood tests. The next day she rang me while I was at work. She asked my if I was lactating. I laughed and said why would I be leaking breast milk as I hadn’t been pregnant? That was the beginning of two years of testing and prodding and poking. At one point they thought I had a brain tumour. Then it was an endocrine problem. It seemed that every time they tested, things would be a little off, but not drastically so. Then they realised the one thing that had been consistently low was my red blood count. My red cells were also consistently large. It was then decided to send me to a haematologist. At first my local hospital said it may be MDS. Eventually I was sent to a centre of excellence and it was confirmed I did have MDS.

At that time there was little info. What info I could find was scary and said the average survival was 2-5 years. I was just about to start a 3 year training course alongside my full time job where I was studying to be a priest. I decided I was not going to let the MDS get the better of me.

The hardest thing was the constant exhaustion. I would often sleep in the car while my partner and daughter went and did the shopping. I also had developed chronic nausea. This is an awful thing to learn to live with.

Most of the time I looked fine. Sometimes if my counts were a bit low I could look really pale. I didn’t tell anyone in those early days because I really didn’t want to be treated any differently. During my 3 year training course I ended up in hospital at least once every year. I always struggled back and caught up and was elated when I graduated.

I was ordained into the Church of England in September 2003. It felt like coming home and I was very happy helping a parish in South-East London and also working as a full time hospital chaplain. After 5 years of doing this I had to have a change of pace. Being on call at night was proving too hard for me. I had had one lengthy spell of illness where all my counts had bottomed out and I was neutropenic.

My next jobs took me into running a parish in Bermondsey as well as being a part time chaplain. When I felt over stretched there I became a full time school chaplain as that gave me the school holidays off. My health was beginning to really fail and I had many bouts of sepsis. This comes with a 60% chance of survival. At one point, whilst on holiday with 12 of my family I developed septic shock. This time there was only a 40% chance of survival. My poor family were told my organs were failing and I was dying.

Fortunately I am made of tough stuff and I bounced back. My wonderful team at Kings College Hospital eventually said I needed to have a stem cell transplant as the chances of me dying were growing stronger with each illness and dip on the roller coaster I was on.

The next problem was that there was no match worldwide for me on any of the donor registers due to a rare abnormality. My sister came forward for testing and we were told there was only a 1 in 4 chance of her being a match. This is always the odds with siblings. Amazingly Gail was a match and I had my transplant in Oct 2016.

The transplant went relatively well. At one point I had a bit of a collapsed lung. I also had a couple of bouts of sepsis but all in all it wasn’t too bad. What’s been hard are the complications of the high dose chemotherapy and powerful antibiotics. I now have moderate hearing loss. That’s been a very hard thing to adjust to, especially as I like to sing choral music.

I have also developed Graft Verses Host Disease. This can be life changing in itself as it’s attacked my liver, gut, mouth, eyes, joints and muscles. Due to the extensive nature of my GVHD I am being treated with ECP which stands for Extracorporeal Photopheresis. This means being attached to a machine for 2 consecutive days every 2 weeks.

I am now a year post transplant and still struggling from time to time but at least I am still here to tell the tale.

Life with MDS is hard. Many people have active monitoring and don’t need more than that, some have medicines to stimulate their failing bone marrow, some have blood and/or platelet transfusions and can end up dependent on these. This is time consuming a very frustrating. Some develop leukaemia, some have transplants and sadly some die. MDS is mainly diagnosed later in life and is unusual in children and young adults but not unheard of.

Over the years I have had thousands of blood tests, cannula’s central lines, in fact more pricks than I know what to do with. I’ve endured many procedures and learned to live with, at times, excruiciating pain. The NHS has saved my life over and over again and I count myself blessed to have access to such amazing treatment.

As it’s a rare cancer our support group is a very small charity. The MDS UK Patient Support Group does an amazing job supporting those newly diagnosed and giving up to date and realistic information. The group also campaigns to raise awareness and challenges some of the more questionable policies that come out of government. This group didn’t exist when I was first diagnosed. I really pleased it’s available now to those who need it.

On this world awareness day could I ask you to post this blog on and share it around to raise the issue of this rare cancer and show your support of those of us that suffer from this debilitating illness.

Thanks.

Friday, 13 October 2017

Learning to live with pain

The following is an extract from my Facebook page on the realities of living with cancer. It was written nearly 3 years ago.

5 Feb
I'm in bed and it's the early hours. I'm exhausted and yet I can't sleep. The pain runs deep and the nights now seem very long. I need to sleep to give my body a chance to repair itself. I have a long day tomorrow. I will paste on a smile because I don't want to be defined by this damn disease. I've always been a good sleeper and always had a high pain threshold. Now I can't sleep and I have pain that is so insistent in its intensity that it's hard to breathe over. I like the attached quote about breathing though and despite the awfulness of it all still hope for more special moments that take my breath away. Thinking of everyone else who has to endure long and painful nights.
"Life is not about how many breaths we take but how many moments we have that take our breaths away"

Thank you to all those who help me keep going. Your love and care and light means a lot.

It's been a tough day. I didn't get enough sleep for a healthy person to function last night yet alone someone living with cancer. I worked 10.5 hours too. It's hard sometimes to smile at people and nod empathically at their problems and aches and pains when you are masking such an awful illness. I don't want people to stop talking to me about their issues but it can be a challenge when you are listening to someone go on about their man flu when you are struggling just to breathe without pain. The weird thing is I wouldn't want it any other way. It can be a hard balance though. Thank goodness I have such good family and friends around me that I can be myself with. I'm really hoping for a better night tonight. Sleep tight everyone.

"Every day may not be good but there is some good in every day"

Thursday, 5 October 2017

4 Feb World Cancer Day

4 Feb
Today is World Cancer Day. It's just been announced that 1 in 2 will get cancer now in their lifetime. This is due to people living much longer apparently. Wouldn't it be wonderful if we had more funding ploughed into Cancer Services so they could support all these people. 
I'm posting this in honour of all those fighting private battles. All those trying to smile through the pain and all those who help make the pain and suffering more bearable. Hang on in there everyone. There could be a breakthrough just around the corner.


So we've all heard that 1 in 2 will have cancer at some point now and 3 in 4 are surviving. That still means 1 in 4 will die and it also means that 3 in 4 are learning to live with cancer. Living with it is not always a walk in the park. It means that we live with constant worry and vigilance of how our health is. It can also mean living with horrible side effects and symptoms and developing medical knowledge that could get you a place on medical school. This is not only going on for the person diagnosed with cancer but also their family and close friends. This post is dedicated to those family and friends that feel so powerless and lacking in control. With out their love, care and affection I wouldn't be half the person that I am.