Some of the best days of your life haven’t happened yet!

Hi there everyone,

Hope your christmasses have brought some light and love to your lives. If Christmas is a tough time for you, I hope you have come out the other side ok.

I’ve just recorded a review of my year for BBC Radio Kent. So much has happened. It’s incredible when you look back in one session at all the ups and downs.

What I’ve realised is I finish the year stronger both physically and emotionally from how I started the year and I’ve learnt lots about myself.

I also finish the year having the strength to start taking Church services once more and maybe being able to do some voluntary work.

That doesn’t mean life is plain sailing. I woke up Boxing Day to discover I had some deep purple bruises. Very pretty colour but I have no recollection of knocking myself. Weird or what?

The last couple of weeks my legs have been swelling too. This seems to be getting worse. I start the day with them puffy and by the end of the day I have no ankles and not much knee either. They are also so heavy and stiff. I’ve no idea why this is happening but I guess it will all become clear at some point.

Tomorrow I am off to Guys Cancer Centre to have a urokianase Infusion over 2 hours. The ECP nurses don’t think it will work but the IV specialist team want to try it to see if they can get my line working properly.  My little sis Gail is coming with me and we are going to have a nice afternoon together after by having lunch and then going to visit The Shard.

It’s so important to have a mixture of nice treats alongside all the challenges and hospital appointments. I’m looking forward to there being more treats this year and lots more mischief...

If you have an idea for some treats or mischief that you’d like to take me on, get in touch. I know I haven’t been able to see all of you since the transplant. I know I also have some treats left over from my 50th birthday that have been on long term hold. If you can remember making an offer, I feel I’m now ready to do these things. Please send me a private message with the suggestion of a few dates.

So as we come to the end of the year and thinking about starting afresh, I would just like to remind you that 365 days means 365 new chances and it’s up to you what you do with those opportunities. I hope you enjoy all the possibilities that come your way and hold on to the fact that some of the best days of your life haven’t happened yet.

A challenging end to the year

Hello Everyone,

I hope wherever you are in life, this post finds you content and with some inner peace.

I’ve had a very long day of hospital appointments. I started with my 8th session of ECP at Guys. Today was day 2 and yesterday I explained to the fantastic team that I was due to move on to Kings after finishing on day 2 and I had another 3 appointments. They were lovely and moved my appointment with them forward by an hour. All kicked off well at 11.30 and despite only one of my tubes (lumen) working, it still all ran smoothly.

I left there at 2.15pm to get to a 2.20pm appointment at Kings. I am pretty resourceful but even I can’t cross London that quickly. I did well though to get there and in the Chest Unit for 3pm. They did their tests and I huffed and puffed in their machines as instructed by a trainee in good humour. It makes such a difference when people are jolly.

Then I went down to Haematology. After 17 years of attending the department, it’s like a 2nd home to me. I brought them some Christmas cheer, as I did in ECP too. They were all very pleased with their tower of biscuits, cake and chocolate. It’s always a good thing to acknowledge and say thank you when people do a good job even though it’s difficult at times.

By the time I saw the lovely Carmel (doctor) she already had access to my lung function test. It seems my lungs are only working at 45%. This is a 20% reduction from last year and indicates GVHD is in my lungs too, as well as all the other places. What this means in more medication. Sigh. At least I’ve got an excuse for being out of breath and don’t just have to put it down to being unfit!

Then we went through my blood results. My red cells continue to drop and I’m very likely to be in need of a blood transfusion soon. If you have always thought of giving blood but haven’t got round to it, now might be a good time to take the plunge.

My liver results are a little better while my kidney results are not so good. The white cells and platelets are as expected and no worries in that department.

Next we discussed my recent bone marrow biopsy and what the results could mean. Carmel explained that my bone marrow cells are 100% Gail’s and that’s a good thing. For someone of my age my marrow is still hypocellular. This means there are not as many cells as there should be in my marrow. I’m not worried about this as I’ve had empty marrows in the past. Carmel then said that the cells were still Dysplastic looking. This means they are still large and not regular looking. This could be because of one of two things. Either all the toxic medicine I’ve taken, and/or currently still take could be impacting on my marrow and making it look out of sorts, or there is still an element of MDS lurking around. Only time will tell which one it is. They will keep a close eye on me and treat and react according to findings.

I then had even more bloods taken to look at what’s going on. The good news is I’ve been given a whole 4 weeks gap before attending Haematology again. I still have ECP after 2 weeks but at least there is a bit of breathing space.

The Appointments continue throughout this week. On thurs, which is my lovely little life saving sisters birthday I have to swallow a capsule endoscopy. That means starving myself from midday tomorrow for 30 hours apart from the disgusting medication they give you. What joy!

My final appointment of the week is Friday when I see a podiatrist due to a recurrent infection in my toe. Maybe then I can concentrate on Christmas.

On Saturday I’m going out for a lovely treat with my big sis Dawn and Will, little sis Gail, Jeff and Jess and my daughter Annie and the grandkids. At least there is something nice to look forward to.

I got home just after 7pm today after all those appointments. A long day with some mixed blessings.

Throughout my appointments today I tried to get into the Christmas spirit. I was wearing a hat that moved and played music and I had flashing lights wrapped over me whilst enduring the rigours of ECP and bringing some smiles to all I encountered.

It seems the NHS are going to need to keep hold of me for a little longer. Thank goodness for all the loving support I have and the fantastic healthcare professional I have surrounding me. I wish you all a very Merry Christmas.

Mixed Blessings

Today was a real mixed day.

Over the weekend my car was broken into. The thieves ransacked the car and stole my dash cam and some other personal items. The lead for the dash cam was wrapped around the rear view mirror. Instead of unplugging it, the scumbags yanked the camera which ripped the rear view mirror off and bring down the housing unit for the city breaking system.

The thieves were disturbed further down the road whilst rummaging in a BMW. I’ve since found out that keyless entry cars are vulnerable to being hacked and that the only way to stop this is to keep your keys in a metal box or buy a Farraday Cage Protection pouch. You can get these for less that £10 on line. I wish I had known this before. Am only posting this in detail so that other readers can protect themselves and their property.

I went to the hospital today for an extra appointment because the consultant was worried about me. My partner took the car to the dealership to see if it could be fixed. It was a bit of a struggle going on my own. Another hidden aspect to having had the car trashed.

The staff at Kings in the supportive therapy unit were lovely, as always. My blood pressure remains a little high. My temp was ok my oxygen levels were slightly low. They took bloods and swabs of my throat and nose.

The bloods came back showing that I’m still anaemic but at present don’t need a transfusion. They will check again next week. My white cells and platelets are ok though, so that’s good. Apparently my kidneys are showing signs of being unhappy and will need a closer eye kept on them. The biggest concern is that my bone marrow biopsy has shown that I still have some signs of dysplasia. The young doctor I saw couldn’t comment further but said to speak to the consultant next week. She did say the consultant said it’s ok and this can happen.

I came out of the hospital feeling a little shell shocked. I was greeted by a beautiful sunset and it reminded me to keep the faith and believe in the light and not to concentrate on the darkness.

When I got home my partner told me the garage had fixed the car as a good will gesture for FREE. Oh my days. What with that and people setting up a just giving page for me, I’ve been fighting back the tears all evening.

Despite all the horrible things that have happened to me I still have so many good things in my life. There are definitely more decent, honest and loving people in the world than thriving scumbags.

Thank you for your continued love and support. I will keep you posted when I have more news. In the meantime I’m sending you love, hugs and prayers and lots of light for the dark days.

Xx

Thank God for the NHS

What a day! I left home at 10.30am to set off for my first hospital appointment of the day. This was to see the ECP specialist. Today I was met with a delightful dr from Portugal. She was lovely and had a brilliant manner. She was full of energy and enthusiasm and extremely thorough. She treated my skin cancer on my back and checked out another lesion and said it was ok but had to be kept an eye on. The treatment was fairly painful but she was so upbeat it was contagious. 

One of the ongoing problems I’ve been having is sore, dry and cracked lips that peel and burn on a virtually daily basis. This is part of the GVHD. This lovely dr noticed that and I’ve been prescribed some heavy duty cream that you can’t drink alcohol with. The list of side effects is endless. Who would have thought a lip cream could be so toxic. Oh my days! Let’s hope it does the job. 

Next I had ECP. As usual only one lumen was working so it all takes longer. It was my 7th cycle of ECP. As this was day 2 I also had to have a dressing change. I’d like you to imagine you have sensitive skin. Now imagine having a plaster on it. The plaster or dressing has to be changed once a week. The longer time goes by, as it is peeled off, the skin becomes more irritable and raw looking. There are still 4 stitches holding everything in place as well as the hole that the line goes in. Next, to add to the experience, is a rub down with an alcohol solution. This can make the bravest soul wince. It really does sting. The worst thing about it is you know you are going to go through this every week for at least 6 months and the skin is only going to get more sensitive. These are some of the hidden issues to having to live with cancer and it’s aftermath. 

I managed to eat half my lunch whilst attached to the machine but I did enjoy the tea and biscuits. 

Next I had to get in my car and drive from Guys to Kings where I saw one of my lovely consultants. Kavita took one look at me and said “I don’t like the look of you this week” She loves me really 😉 She told me my bloods were giving cause for concern. I’ve lost about a 3rd of my red cells and the marker that tells them red cells are being destroyed is raised. She has adjusted some of my medication to see if this halts the slide and wants me to come back for a review on Monday. If things are still low I may need a blood transfusion or some injections of a drug that boosts red blood cells. Then she wants to see me again the week after that. I think they just like having me around. Lol. 

I was also seen by the dietician and my CNS, all of whom are great people and very reassuring. That’s one of the reasons why I am supporting 

#myCNSmatters

I finally got home at 7pm. I managed 2/3rds of my dinner before heading up to bed with a cuppa and some chocolate. Everybody knows that love and hugs and a little bit of chocolate make the world good round. 

Can you imagine how much all that cost today. It’s £3000 just for each cycle of ECP! Good job Richard Brandson isn’t in charge of healthcare because I don’t think I’d qualify for cover. Thank God for the NHS and thank God for so many amazing medics. Everyone I met today was a credit to their profession. It was clear that in some places they were short staffed but they continue to be friendly, professional and really dedicated human beings. Thank you so much for making my long day so enjoyable despite the sore bits and the bad results. You deserve a huge pay rise and all the recognition I can muster.

A trying week

Following on from my latest I’ve been having a real mixed bag of a time in many respects. I’ve had some lovely weekends with my siblings. The problem is the weeks in between. 

After day 1 of my 6th session of ECP where I had been made to wait 90mins before I could start my treatment due to needing to see a specialist and I had also managed to fit in an appointment with my dentist before all this, I approached day 2 with trepidation. I had to have my one year bone marrow biopsy at Kings and when that was done, drive to Guys and have my next session of ECP. I was relieved to find that a registrar was doing the biopsies that morning. Relieved because that meant she would be experienced. I know the younger ones have to learn too and I’ve had many practice on me, but just now I feel delicate and don’t want to be pulled about more than I have to be. Kate, the registrar, was great. She was friendly and professional and had an excellent bedside manner. She was also very proficient. The biopsy of course hurt when it came to taking out the core from in the bone but the liquid bit wasn’t so bad. The bruising was minimal as you can see and it was only painful for 24 hours. Now it only hurts if there is any pressure on it. 

As soon as they let me leave Kings I got myself to Guys as quickly as possible only to discover that one of the machines was out of order and I had been bumped from the list and again had to wait 90mins to be connected up. When you have just had a bone marrow biopsy, it’s like being kicked in the back by a horse. The last thing I needed was a long wait in a hard plastic chair. It also meant that once again I’d be driving home in the rush hour.  Thems the breaks though and there was nothing I could do about it. 

When I finally went in I kept my fingers crossed that the extra medicine that had been put in my faulty Hickman Line would have unblocked it. Sadly this was not the case. I had to have a single needle session which takes nearly twice as long. At the end of the season the line expert came back to try and get the line going again but it was to no avail. They are talking about doing another linogramme. Sigh. I’m going to be so full of radiation soon you will see me glow! 

I was very pleased to get home and get myself more comfortable. During the night though I woke up feeling sick and had a headache. This didn’t improve when I got up. I had a few sips of tea and then got sick. I wasn’t able to take any medication for 24hours and I spent most of it asleep. I also had a low grade fever. My poor long suffering partner was really worried. 

Thank goodness after nicking a migraine tablet in the middle of the next night by morning I started to feel human and was able to eat and drink again. More importantly I was also able to take my medication. 

I’ve felt weak and wobbly all week and a bit out of sorts. I’m a bit breathless and my bones ache. My stomach has been churning and I’ve had that delicate feeling. 

It’s weird. I can put up with so much. I’ve got used to not being able to do things but I hate feeling ill. 

Let’s hope things change soon and that it was just a reaction to the ECP. 

Any way I’m in good spirits. I’ve got some lovely things to look forward to and I’m determined to come out on top of all this. One thing that made my day today was winning an Advent calendar from Leukaemia Care because I commented on their social media campaign to explain why #myCNSmatters. I’ve met some fantastic CNS (clinical nurse specialists) over the years. They have helped keep me sane in the rough times. There are also a great bunch of nurses in the Haematology outpatient supportive therapy unit and on Davidson Ward at Kings. I am always willing to stand up for our nurses and the nhs. Without them I would not be here. Thank you for saving my life over and over again. 

Wherever you are and whatever you are doing I hope you can find the blessings in your life and that they warm your soul during the dark times. 

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

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.

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.

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? 

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.

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"

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.

Appointments appointments appointments.

2 Feb

I seem to spend half of my life in hospital or GP waiting rooms. I'm in phlebotomy just now waiting for a blood test. I have to have the test before I see the consultant. The consultant needs the results in front of them when I'm seen. That means I have to come at least an hour before my appointment time. Today the blood tests are running slow and it seems it might be 55 mins before I'm seen. That means I will have to wait at least an hour after that for the results to come through. 

I try really hard not to let all this stop the rest of my life but it's hard. On days like this I know I can't work. I don't like taking so much time off but I have no say and no control. Surely there has to be a better system than this? Sometimes I think the medics should experience what they inflict on us. They are all lovely people but I'm not sure they see the impact of their systems on the patients they treat. 

Let's hope after all this sitting around the result is good.

Today's appointment went well. Things are looking better than last months awful result. I have my next appointment in another hospital in a month and then a follow up with today's clinic in 8 weeks. It's a never ending cycle. I wonder what I could do to liven up these events. 

What was lovely was an unexpected lunch and a good talk with a woman who talks a lot of sense. 

Now if only I could get this awful pain to stop and regain my ability to sleep through the night. If that happened there would no stopping me.

There is a proverb that says "may you live all the days of your life" We all need to live until we die and not start dying from the moment of a difficult diagnosis.

Living with cancer

In 2015 I started a Facebook community page called "We are all terminal - The reality of living with cancer. Initially and for quite some time in fact, I did this anonymously as most people didn't know I had cancer. Maybe the reasons were multifaceted. I've never wanted to be treated differently and I also don't like hurting, upsetting or worrying people.

I was diagnosed formally in 2000 with a rare blood cancer called myelo dysplastic syndrome. I had had symptoms for a few years before this but, due to the rareness of this illness and the fact that it usually afflicts older people, it took a while to diagnose me.

That means that for the whole time I was writing my blog about chaplaincy and working with people caught up in the many traumas that brought them into hospital, I myself was also having regular medical appointments and dealing with my mortality. Maybe that helps explain why I have such a passion to ensure people live until they die and why I'm not afraid to go where angels fear to tread.

I have decided to now release those community pages via this blog so that they are accessible to a wider audience. I hope that in a some way these random thoughts help anyone who is struggling. September is also blood cancer awareness month so I do it in honour of all of us living with various blood cancers as well as all the other fighters and survivors, carers and patients. You are an amazing bunch.

Jan 2015

When you live with cancer you do want to inspire people. I certainly don't want people to just see the illness. I want them to see me for who I am. I still want to be a mischievous imp. I still want to be a valued member of staff. I still want to be a much loved family member. I don't want to be the cause of worry and upset for people. I guess the trick is to learn to cope in all those situations and always to make the best of it.

It's hard to explain tiredness to someone who doesn't have cancer. When I say "I'm tired” I often get back "I'm tired too" When you have cancer though tiredness takes on a whole new meaning.  It's like being tired in a way that no matter how much sleep or rest you get it doesn't make a difference. It's an exhaustion that goes down into your very core that nothing can fix. Next time someone with cancer says "I'm tired" stop and think if you really know what they are talking about.