A reflective practitioner

The last few months have been hard. As a reflective practitioner, I’ve been thinking about how long I’ve felt below par. I realised how I’ve never really picked up since my 5 week admission over the summer.

Since returning from Ireland, after I got out of the ward, I have virtually had weekly appointments. Sometimes I’ve been at the hospital 4&5 times in a week. I seem to have an inability to maintain my electrolytes. Also my HB (haemaglobin) keeps dropping to the point where I need a blood transfusion.  This cycle has continued since August and I’m tired now.

This last week was typical of how things have been. Monday I had a review in haematology. My HB counts had come up to 96 so I didn’t need a transfusion and the electrolytes were only a little low.  I got to the hospital at midday and was home by 4.30pm. Tuesday I managed to go Christmas shopping. I felt cold and breathless and a bit faint. At least I got the things I needed to. Weds I had ECP at the cancer centre. I felt really yuck during the treatment and ended up falling asleep. I got to London Bridge at 1.45pm and was home for 5pm. The next day was a rare treat and I caught up with my lovely friends Alison and Cara. I was very slow and cold and breathless but shrugged it off. That night at 6.30pm I had a call from ECP to say my HB was only 85 and they couldn’t give the next days treatment unless I had an urgent blood transfusion.

I emailed Kings and explained what was needed and that I was coming to Kings for a midday appointment for an echo cardio gramme. They rang in the morning and asked me to get in earlier. I arrived at 10.30am. They took blood around 11.30am. I went off and had my scan and came back to Haematology. They told me my HB was now 83. I went and waited outside till they had some blood for me. They called me back in around 3pm. It takes 2 hours for a transfusion of blood. I was meant to be at Guys for 4.30pm for day 2 of ECP. I rang and they said as I’d be so late would I come the next morning instead. So Sat morning when I’m meant to be doing Christmas things I go back to the cancer centre to complete this weeks treatment cycle. I got home around 6pm on Friday and Saturday I was at the hospital from 10am till 2.30pm.

I list the hours in this post just so you can see how many hours I spend sitting around waiting rooms and how I have to constantly juggle competing demands and numerous appointments. Next week is Christmas week. I have an appointment Christmas Eve in the lipids clinic to see why my liver is causing cholesterol issues. I’m then back on 27 with pain clinic in the morning and late effects clinic in the afternoon. It’s just relentless.

It helps keep me sane that I have such a good family around me. I’m also glad that occasionally I break out and do something completely different.

As this years draws to a close I’d like to say a huge thank you to all my friends who have been there for me. The ones who know when to send a text or message, the ones who call in with cake and biscuits. The ones that invite me out to do fun things or get up to mischief. I need more of this in my life next year to balance all the rest of it. I hope this post encourages you to keep being the great people that you are.

To all those travelling the MDS journey with me, hang on in there as best you can. Let’s hope for new treatments and one day a cure. We are a rare band and it’s great the way we stick together and support each other. Know that I am thinking of you and holding you in the light and love of Christmas.

To my family, I am so blessed to have such a diverse family which is growing all the time. I love you all from the bottom of my heart and appreciate all you do to keep me as happy and healthy as can be. In that respect I am really blessed.

To myself. Keep going Kes some of the best days of your life haven’t happened y

Rebel Rev is running out of steam

I’ve had an interesting a exhausting week. An altruistic stranger saved my life on Monday in the form of a blood transfusion. Usually that perks people, including me, right up but I didn’t feel any better for my “pint” of the red stuff!

Weds and Thurs I had ECP. I received this lovely Christmas card from the staff. It’s all the more poignant because 2 members of staff have just left. Monica and Ali will be really missed. Those of you that read my blogs regularly will know that relationships with staff in this context is different. I have ECP every 2 weeks for 2 consecutive days and have done for the last 15 months. I’m in the department for anything between 2.5hrs and 4hrs each day. That means you get to know the nurses well. You know what’s going on their lives. You look at their wedding photos and chat about their children and the issues that are important to them. In the same way you talk about yourself and what’s going on for you, not just the medical staff. When someone you’ve developed a good relationship with moves on, it’s like a mini bereavement. I wish them nothing but the best and I hope they know the difference they make to me and the lives of all the patients they serve.

On my way home, a huge wave of tiredness came over me. Despite the weather I had to open the windows and put some music on. Day 2 often leaves me wiped out.

There’s no rest for the wicked though. I am involved in a campaign called John Roan Resists - No to Academies. My grandchildren go to the local comprehensive school. It’s being forced to become an academy. The sponsor that has been allocated is the UST Academy chain. We have uncovered lots of reasons as to why no one should be in business with these people, yet alone trust them with the previous hound minds of our loved ones. I was asked to give a speech as a parent/grandparent representative. I’m always happy to do this sort of thing. Speaking in public comes easy to me. I also like doing things that are not hospital related. I’ve met a great bunch of committed and principled staff who are prepared to put their jobs on the line and a diverse group of parents too. What unites us all is that our children are not commodities to be bought and sold and their education is too important to leave to those who do not justify their fat cat salaries. Do check out our Facebook page and like our campaign if you agree.

Today I had to go back to haematology to check my blood and electrolyte levels. It seems my HB (haemaglobin) has only come up to 93 with the transfusion. Also I had to have another magnesium infusion. I hate having magnesium. It makes you feel so hot and sick. My calcium was also a bit low but they said I could leave that a bit longer. They want me back tues to check the levels again as I may need more blood as well as the replacement electrolytes.

I dozed off in the chair at one point and became aware that someone was holding my hand.  I opened my eyes to see Prof Mufti smiling at me. He asked how I was and gave me a hug. He is such a lovely man. How lucky am I to have this eminent doctor in my corner?

So 4 appointments this week. 5 appointments last week. Let’s hope things calm down. I’m itching to get my Christmas decs up. I just want to do some ordinary things. I also love creating a beautiful effect with lights.

Tomorrow I’m off to the theatre. It’s the last birthday treat for my long suffering partner. My sisters and their husbands are coming too. It’s going to be such a lovely surprise. Guess the Christmas decs will have to wait.

To finish off with, here’s a quote to inspire you to keep going and to be the change you want to see in the world.

 “People who are crazy enough to think they can change the world, are the ones who do.” – Rob Siltanen

An irritating situation

Today was a bit of a challenge. The morning started well and I was able to do a bit of housework before heading to Kings. This was for my 5 hospital appointment of the week. I had to be in the Cardiac Unit for 1.30pm according to my letter for an echo of my heart. As it was the weekend and not rush hour, I gave myself an hour. Sadly I had underestimated the madness of the time of year and all the Christmas shoppers. The roads were a nightmare.

I tried to ring to explain I was coming but running slightly late. As it was a Saturday I couldn’t get through.

I got in to the department at 1.40pm. A rather perplexed woman asked me what I had come for. She then said to take a seat and she would get someone. Then a man came back that I had passed in the corridor. He explained he was the admin worker and that unfortunately as I was late, my appointment had been cancelled. I said I had just driven over an hour and was there no way I could be seen.  He said that the technician had gone home. I was so irritated. Not with the man that came back and explained things but at the situation. The helpful man said he would leave a note for Monday’s admin to set up a new appointment as he couldn’t follow up, as he only worked weekends. I said the new appointment would have to be made when I had an existing appointment as I was not going to make another special trip as I already have so many trips to the hospital as it is. I did manage to thank the guy for his helpfulness despite my frustration.

On the way home I found myself getting irritated all over again. I decided to put the radio on loud and sing along. The Christmas songs were coming thick and fast. Singing along helped lift my mood. I guess it’s like that quote says “life is a grindstone. Whether it grinds you down or polishes you up is up to you”

It’s all well and good having these extra appointments. The government wants a 24:7 NHS, which it is for emergencies but the infrastructure is not there for these clinics on a Saturday.  A phone is a pretty basic requirement to run a clinic. I might just have to give them a bit a feedback. As you know I always big up the NHS and know I wouldn’t be here without the skill and dedication of so many. On this occasion though I think they could’ve done better.

Had a lovely evening celebrating my wonderful and long suffering partners birthday. We went to the cinema and saw a great film called Disobedience. Tomorrow we have a family meal out and no doubt more fun and laughter. At least the day ended well. Balance in all things is important.

Hope you’re all having the best weekend you can and if it’s a struggle, know that I am holding you in the light.

An unexpected result

Well I didn’t see that coming today. 

I’ve had a lovely few days in Vienna. I was so impressed by the company that flew me and Maggie out to talk to them about the reality of living with GvHD. There were physicians and healthcare professionals and scientists from all over Europe. The whole conference was in English as the common language. They put us to shame by not only communicating with each other in a second language but also by being able to present PowerPoint presentations with very obscure words about complex health issues, also not in their native tongues. I take my hat off to them. 

Maggie and I had a wonderful break following the conference and took in the sights of a cold but beautiful Vienna. The Christmas markets were very sweet to wander around and the lights were stunning.  The people in the hotel were really helpful and friendly. It would be lovely to go back one day. There is so much rich culture and history to see. I’d highly recommend it. 

We got back last night. Today it was business as usual. I had to get myself to Guys for ECP and then Kings for a check up. Guys went really smoothly. Kings was a different kettle of fish. The really nice young doctor who I saw the day before I went to Vienna was expecting me. She said my chest was slightly wheezy still. She sent me for a chest xray. When I got back she said my electrolytes were wildly abnormal and that I would need urgent IV calcium, magnesium and potassium and an ECG. She also said I’d have to come in. I, of course protested and she agreed that I did look well. They repeated the bloods and they weren’t quite as bad second time round, so they let me go after giving me the 3 medications via my Hickman Line. Now all we need to do is work out why I can’t keep an electrolyte balance. They only gave me 6 hours of drips the day before I went to Vienna. Let’s see how long this lot lasts. 

I have to go back to Guys tomorrow for day 2 of ECP and then next week I have a lung function test on Monday, clinic on Tuesday, dermatology Weds and oral medicine Friday. Oh what joy! 

For tonight I am very glad I am in my own bed. Let’s be grateful for small mercies and remember that a mighty oak tree was once a little nut that held its ground. 

Another long and challenging day

Today was a bit of a day and a half. I had to be at Kings at 12.30pm. I had been busy trying to get myself ready for a trip and some nice treats later this week. I was also doing a bit of housework and some admin. In other words being a woman and multitasking.

All of a sudden my lovely Maggie walked head first into the cupboard and cut her head. Oh my days. I had to steristrip the wound before I went off to my appointment.

I got to Kings and had my bloods taken and then went off to see my little skin and blister Gail. After an hour I went back to haematology outpatients to get my results. It seems my electrolytes are all over the place. Despite the 6 hour infusion of phosphate that I had last week, it’s still in its boots. My magnesium and calcium were also low. They had to give me IV calcium as it was that low. I take calcium every day as well as magnesium. It seems my gut just won’t absorb them at present.

I was given a check over and was told I had a little bit of a wheeze. I said it happens from time to time. They have taken some swabs in case I have a virus and given me an inhaler. They also want me back next Monday to check the electrolytes again and do a lung function test and xray.

I finally got away at 6.15pm. I got footed it back home as I had a meeting with a great bunch of people fighting the forced academisation of my grandsons school.

Finally got in at 10pm and had to eat something and sort out my medication for my trip as well as take my evening dose and crush what I could to put in my PEG. The effervescent phosphate goes down the PEG which is great because it tastes disgusting. Sadly it upsets my stomach so much it’s like swamp water coming out of me. Kinda defeats the object uh? Oh well. Let’s see if things improve with a week of treats. I’m sure even if I don’t physically feel better that emotionally and spiritually it will do me good.

I hope you also have a good week. Whatever the weather don’t forget to bring your own sunshine.

Xx 😘

Remembering for remembrance 100

Remembrance Day or Armistice is meant to be a day of remembering that came about following WW1.

My grandfather fought in the Battle of Somme. He was gased in the trenches and died earlier than he would have because of the bad chest he went on to have for the rest of his life.

When I was at school we studied this poem. It had a profound affect on me.

Dulce et Decorum Est
BY WILFRED OWEN
Bent double, like old beggars under sacks,
Knock-kneed, coughing like hags, we cursed through sludge,
Till on the haunting flares we turned our backs,
And towards our distant rest began to trudge.
Men marched asleep. Many had lost their boots,
But limped on, blood-shod. All went lame; all blind;
Drunk with fatigue; deaf even to the hoots
Of gas-shells dropping softly behind.

Gas! GAS! Quick, boys!—An ecstasy of fumbling
Fitting the clumsy helmets just in time,
But someone still was yelling out and stumbling
And flound’ring like a man in fire or lime.—
Dim through the misty panes and thick green light,
As under a green sea, I saw him drowning.

In all my dreams before my helpless sight,
He plunges at me, guttering, choking, drowning.

If in some smothering dreams, you too could pace
Behind the wagon that we flung him in,
And watch the white eyes writhing in his face,
His hanging face, like a devil’s sick of sin;
If you could hear, at every jolt, the blood
Come gargling from the froth-corrupted lungs,
Obscene as cancer, bitter as the cud
Of vile, incurable sores on innocent tongues,—
My friend, you would not tell with such high zest
To children ardent for some desperate glory,
The old Lie: Dulce et decorum est
Pro patria mori.

Notes:
Latin phrase is from the Roman poet Horace: “It is sweet and fitting to die for one’s country.”

I was fortunate enough to listen to an old man tell me about his experience of the D-Day landings and the horror he witnessed and experienced. That man suffered PTSD for the rest of his life. He had never spoken of his war time experience to anyone before. He was by then in his 80’s. I had the privilege of collecting his tears and honouring his story.

My father lied about his age to join the Navy and fight in WW2. My father-in-law, a German man, was rounded up by Hitler when he was 14 and sent to the front line. He was captured by the British and became a POW. At the end of the war he was sent home to his mum. It’s so strange that both these men ended up in my immediate family. Had they met during the war they would have killed each other. Instead they met at family dos and shared a drink together.

I believe some of my fathers problems stem from the awful experiences he had as a teenager during the war years. In that respect, I too have paid the price of war.

I am a pacifist because I believe we have to find peaceful ways to resolve conflict. The bible says Thou shalt not kill. War often doesn’t decide who’s right but who’s left. It’s destructive tentacles reach on into future generations and so many lives are blighted.

During the silence I will be remembering all those I’ve mentioned. I will also remember those shot for cowardice, the conscientious objectors, women and children raped as a tool of war still to this day, the so called collateral damage of millions of civilians, soldiers on all sides, those in unmarked graves and the politicians who order armies in but don’t always learn the futility of war as opposed to military strategists who do.

In the last 100 years there has only been 1 year where a British soldier hasn’t been killed. That in itself is a shocking statistic. WW1 was meant to be the war to end all wars. When will we learn?

Poor Rebel Rev has to take statins. Will it ever end?

Today was one of those days. I was at Kings for a clinic appointment. Parking was worse than normal but I had just lined myself up to a parking space and was indicating and had started to reverse when this twat jumped into the space in his BMW. The cars behind him saw what he did and started to bib him. I was incensed. After I had my blood test I went and out this note on the young mans car. I wanted to rant and rave and swear at him but somehow managed to control myself.

My mood wasn’t improved by my appointment. I’ve been told I have to take statins as my lipids are all sky high even on a fasting blood test. I’ve been warned I may feel horrible until I get the right drug for me. Oh what joy. Don’t I already feel bad enough?

Then I was told that my phosphate has gone really low again even though I only stopped it 2 days ago. My magnesium has also dropped so I have to increase that too. The phosphate is so low that I have to go back to Kings and have a 6 hour infusion of it. They think it’s because my gut is not absorbing properly. It’s very irritating as I was hoping to get away with only one visit to the hospital this week. Oh well such is life.

It can be tough to keep cheerful in the face of all of this. Sometimes it feels like it’s never ending. The medication causes problems and you need more medication to combat the side effects. Every day can be a struggle of pain, stiffness, nausea, breathlessness and fatigue. Sometimes I just want a bit of a break. Surely it’s not too much to ask. The last thing I needed was the young man who stole my parking space. Like I said let’s hope he gets his Khama.

Rebel Rev says goodbye to her brilliant GP

Another day, another ECP session. Today though I had a nice surprise in the form of a pressie from Dave. Thank you for making me smile. 

I was at Kings all day yesterday. I saw the rheumatologist in the morning. He is happy to take a back seat just now with all that’s going on with Haematology and the GvHD. 

I then wandered round to haematology who wanted another swab of my PEG site. The last swab was positive for a different bug than the time before so they are double checking. They will phone and let me know if I need yet more antibiotics. I’ve still got an upset stomach from the last lot. Apparently there is a possibility those antibiotics have caused C-Diff. Having to wait for the results to see if this is true. 

While I was there I bumped into Emma. It was nice to catch up. It’s always good to have a face to face conversation. Hope you have no ill effects from your trip. Fingers crossed for the results. 

When I got home I went to see my GP. It was his last day after 31 years of serving the people of Charlton. We have developed a fantastic working relationship over the years. We haven’t always agreed but we both had enough respect to listen to each other. My life has certainly been blessed by being under his care for the last 27 years. It will take me a while to train another doctor. What has been great about my relationship with Derek is that we see ourselves as a partnership working on what’s in my best interest. He learned that pushing me to do something I wasn’t ready for was counter productive. I also learned that there were times when he was right and I had to go with his way of doing things. I am going to miss him so much. Derek I wish you all the luck in the world as you step out in faith to who knows where. You are a star. My love and respect goes with you. 

Todays ECP has gone well. Back again tomorrow and hopefully that will be it for this week. I suspect that there will be lots of additional appointments coming up. My cholesterol is still sky high even on a fasting blood test.  I also need to see someone because the pressure on the right side of my heart is a bit off. My PEG is still oozing pus. I have adrenal insufficiency. It’s likely I have peripheral neuropathy. I think I’ve got another little skin cancer on the back of my hand. I’m becoming increasingly anaemic again. Apart from that I‘M FINE! Lol. 

When I get out of here today (Guys Cancer Centre) I am going to collect the grandkids and head off to a Halloween Party to support the John Roan Resist Campaign. It’s good to have other things to concentrate on. Life doesn’t stop because I’m ill and not should it. My battle is working out how much I can do and how much to rest. Balance in all things is the name of the game. Let’s hope I can achieve that by the end of the weekend because at present the medical appointments are out in front so I need more mischief to counter balance. 

Wherever you are and whatever you are up to have fun and make sure you create some light and love wherever you go. 

Is there life outside of hospital appointments?

So another week and another lot of appointments. At present I have 4 in the diary. That may change. 

I’ve finished the antibiotics but my guts have not calmed down. It could be the GvHD is playing up. It could be an infection, or it could be the antibiotics are still causing problems. 

More annoyingly my PEG is still oozing pus and if I press around the area it makes more push drain. I don’t smell too good either. Yuck! Sorry if that’s too much info. 

Last week was busy but productive. I had a good #MDSWorldAwarenessDay. Myself and Claudia Richards and Ally represented MDS UK Patient Support Group and between us spoke to 11 different radio stations. After that I was whisked off to have a chat with a Pharma company who want to get patients more involved in how they develop and grow. I think medics, patients and Pharma companies should all work together as that would always give the best outcome for the patient. Gone are the days where the doctor is God and patients are just passive recipients with no power. Let’s hope something comes of it. 

I’ve been feeling more tired the last couple of weeks and have fallen asleep on the sofa a few times. I’m also pale and breathless. I really hope this isn’t the start of another dip. One of the hardest things about living like this is that it’s similar to how Damocles must’ve felt when he went every where with a sword perched over his head, never knowing when it would drop and strike it’s fateful blow. 

I don’t want to have to be over cautious. I wish I didn’t need to see so many drs. I know I’m going to need to contact my lovely CNS and say about the pus still leaking from my PEG. I guess she will say I need to come in and be seen. I’d really like it not to be the case. I know they are only doing their job. I just get so fed up with the intrusion into my life. 

I’ve got lots I want to do at home. I have loads of sorting out that is calling me. I also have a desire to spend a couple of days in bed watching crap TV. I wonder if I manage to do anything in between the 4 hospital appointments. Oh well let’s see what the week brings. As I always tell people you can’t start a new life but each day is a new day. 

Dealing with admin cock ups!

Today was a very annoying day. 

It started nicely with an unexpected text from my little sis Gail saying she would come to the hospital with me today and keep me company. That was a nice treat. 

We got there in plenty of time to be seen in the Rheumatology Clinic at 11.30am.  The receptionist told me that sadly the clinic had been cancelled and my appointment was now next week. He was sorry that no one had told me. It’s soooo frustrating. Mornings are not easy for me because of all the medication and because I feel most ropey. There was no point shooting the messenger so I just had to accept that I’d had a wasted journey. 

As I thought I had an appointment I had left some meds in pharmacy to pick up, so I did that. I then went to haematology to have my 2 dressings changed. They were not happy about the oozing still coming from the PEG. The HOP doctor wanted another swab. He also wanted to refer to someone more senior. After another hour I was fed up with waiting and said they could ring me if they needed anything. Sometimes I feel like they forget that I might just have a life outside of all these hospital appointments. 

I managed to get out in enough time to pick up my gorgeous niece and partner and with my little sis we all went off to see A Star is Born. It was great to do something ordinary and not medical in any way. It’s a beautifully poignant love story. I believe love conquers all, even cancer, GvHD, hospital appointments and long term

disabilities. I just need to hang in there. 

Light a candle don’t curse the darkness

Hello everyone,

I hope that you have some light and love with you in your daily struggles.

My skin cancers are healing nicely. L

After my raft of appointments last week things continue in the same way this week. Today I saw my lovely eccentric Pain Clinic Consultant. She has prescribed a cream with chilly in it for some of the pain I get on my skin. I’ll give it a go but it sounds a bit weird.

Then I had a blood test. There were 48 patients in front of me. Sigh. I spend so much of my time in various waiting rooms. I cheered myself up while I was waiting by watching a documentary on death row. Lol.

After this I saw my haematologist. I’ve been told to persevere with the antibiotics even though they go straight through me. He wants to repeat my echo cardiogramme as there was an abnormality on the last one. He wants to repeat my lung function test. He wants to check my nerves and if I have an neuropathy. He also wants a fasting cholesterol test as my result is still sky high. He is going to refer me to a specialist post transplant lipid clinic. We talked about if they would ever use the word cured with me. He said let’s see about getting to 5 years. And then we will see after 10 years and if still cancer free then they might consider I’m cured. I’ll keep plodding on.

After seeing him, I had to see the dietician. She’s back in the department after a long gap and remarked how well I was looking. That’s good feedback to have. She is going to get a specialist nurse to contact me about the problems I’m having with the PEG and discharge and what’s normal or not.

Most people would not have that many appointments and interactions with medics in a month yet alone a day. I’m back again tomorrow where I’m seeing the consultant rheumatologist and when he is finished with me I need to have my Hickman Line and PEG Site redressed. Life eh?

People say to me why do I write this blog and work to raise awareness of this rare blood cancer called MDS and the complications following a transplant. The answer can be summed up in this anonymous quote - “If you have knowledge, let others light their candles in it.” I don’t want anyone to be sat in the darkness and if I can give something of myself to bring some reassurance to others then I’m happy to give myself away. After all a candle loses nothing by lighting other candles.

Life is on 10% of what happens to you

Amazing to see all the different colours that blood is. It’s been a strange day in many respects. 

I went to bed around 11pm last night and was still laying there wide awake at 4am. This is the second time that’s happened this week and is highly unusual for me. Even if I have something on my mind I usually sleep. I need around 10 hours most nights. At 2am I picked up my phone and checked the side effects of Clarithromycin on the NHS website. Insomnia is in the top 10. Oh my goodness. Only 2 more days of these tablets to go and hopefully my usual sleeping pattern will return. 

I was up early today because I had 3 separate appointments at Guys. The first was physio at 11am. That went well apart from me being late because my PEG pump was being temperamental. Getting out of the house early is really hard. I don’t feel brilliant at that time of day. Then I have to crush a load of tablets and put them down my PEG. Then I need to find the resolve to swallow the rest of the tablets that can’t be crushed. I have to do all this while feeling extremely nauseous and wobbly as well as being in pain and stiff. 

Any way, I digress. My next appointment was at 12 with the dermatology team that specialise in GvHD and are in charge of the ECP treatment I have fortnightly for 2 consecutive days. I saw a new doctor. He is Italian with a really lovely manner. He has changed my anti-itch medication as my skin has been really itchy again. He also said I probably have neuropathy. That’s the first time anyone has said that. I was asking him why my skin felt bruised if I scratch it and if I cross my legs I get severe pain for about 15 - 30 seconds when I uncross them as the pressure comes off the lower leg.  

Since coming home I’ve looked up neuropathy and it fits like a glove with some of the symptoms I’ve been experiencing. Guess that will need exploring next. In my case it’s a result of the heavy duty chemo I had to endure. 

After this discussion I got the dr to look at a few dodgy looking bits on my skin. He then confirmed all 3 were basal cell carcinomas and he would deal with them there and then. He got the equivalent of a blow torch. It contained some really cold chemicals. He then blasted each BCC. It was very stingy and hurt a bit. As you can see from the pictures the one on my leg has been oozing and stained my tracky bottoms. The reason I get these now is directly linked to having to take immunosuppression and is why I have to be extra careful in the sun now. Sad because there is nothing I like more than lying on a sun lounger listening to fabulous tunes and letting the warmth of the sun soak into me and kiss and heal the sore spots. It’s often been the way I relax most and strangely also been the time when I have many creative thoughts. 

After breathing deeply while he tortured me with his “blow torch”, he then said I would need to continue to have ECP fortnightly and it would be reviewed again in 3 months. By then that will be nearly 18 months of 2 consecutive days every 2 weeks. It’s a huge commitment and a tie to having to stay put. It’s hard to get away. On the other hand I am very fortunate that I live in a country with a free NHS and a great bunch of consultants who enable me to access all this expensive treatment and keep finding new ways to torture and treat me. 

I then went into the admin office and plotted all these appointments which will carry me through to the beginning of Feb 2019. 

After this I went for my ECP. You’ll be pleased to know my Hickman Line is working perfectly. This is the 5th one I’ve had and is the first to work so well. Thank goodness for small mercies. 

The man in the chair next to me is someone I’ve smiled at and said hello to before but today we had a really lovely chat. He is a year ahead of me and had his transplant in 2015. He also has a PEG. We had some really similar experiences. He has had ECP fortnightly for over 2 years. Oh my days, I hope something gives in me soon as I really want to get on with the rest of my life outside of the hospital. 

I managed to get back and take my gorgeous 7 year old granddaughter to her first learn to sing group. She asked me to help her with her singing. My good friend Simon runs this group and had space, so it’s a match made in heaven. She told me she really enjoyed it. It was lovely to have this oasis of normality in a busy and challenging day. She is a little ray of sunshine and I am blessed to have her and her 3 brothers as my wonderful grandchildren. 

I finally got home and slumped on the sofa. In the post that I opened when I got back was the results of my Short Synacthen Test. It confirmed I have severe cortisol deficiency. This means my fight and flight response will not work properly and I will need to be in steroids for life now. Oh well. Nothing I can do about that either. 

So today has been trying. I’ve learned that I have probable neuropathy. I have severe adrenal insufficiency. I need to be ultra vigilant with my skin to keep an eye out for further BCC’s. I will have to dig deep at times to make the heavy regime of hospital appointments work not only for me but  for my poor long suffering partner and family.  I also learnt through speaking with my ECP neighbour that life is hard for so many of us. This man has a small child and one on the way. My daughter was young when I was diagnosed. It is hard to be present fully for your children when you feel so rubbish most of the time. When my daughter was younger I had more better days and I hope she didn’t suffer too much. I feel really sad that I can’t do all I would  like with my grandchildren. My daughter said to me once that it hurt her to see me sit in a chair instead of playing with the kids. She said that she remembers me always being such fun when she was small. She knows I’d want to be like that with my grandchildren. At least the wonderful gift that my lovely sister Gail gave me in the form of her stem cells has brought me precious time. I might not be able to be as playful physically as I would like with the kids but at least I’m still here and in their lives. That’s got to be a good thing. 

I’m back at Kings in the morning and Guys in the afternoon tomorrow. Let’s hope and pray it’s less demanding and eventful than today has been. 

Remember people life is only 10% of what happens to you. The other 90% is how you react to it. You can’t change what life throws at you but you can keep your attitude in check. Good luck with whatever burdens you are carrying too.

Why is pus so gross?

I’ve been a bit quiet since my PEG was inserted. I was surprised by how much it took out of me. The pain did gradually subside each day so that was good. Then one morning I woke up and the area around the tube was painful again. When I had a closer look it was red and angry and then the pus started to appear. Great! 

I’m now on double strength antibiotics and feeling really sick as a result. There in lies the challenge. The medics have to treat me and as an immunocompromised patient it’s vital to get on top of infections. The problem is the antibiotics affect my quality of life. 

Quality of life issues are a huge aspect of daily life for MDS sufferers and those living with extensive chronic GvHD. Medics never seem to ask quality of life questions but to us it’s often the most important aspect of our daily lives. 

I’ve been pleasantly surprised this week. I’ve had conversations with 2 different pharma companies. They are making a huge effort to be patient centric and bring the voice of the patient into their decision making. This is a significant move in the right direction. I do not want to be a passive patient who just receives care and treatment. I am a partner in my care and we all need to work together with the common goal of getting me as well as possible. Let’s hope this is all the start of a patient power revolution. 

Revenge of the PEG

Well it’s been an interesting 24hrs. Needed lots of morphine last night and finally settled around 5am. The pain is a dull roar now and only excruciating when I catch the tube.

This morning I was told the bad news that they wanted to keep me until Thursday. As you can imagine I was not best pleased. The reason is because they couldn’t get someone to come and train me on care of the PEG till thurs morning. The dietician was lovely and very apologetic. She told me that it’s standard practice on haematology for at least a 48hr admission post PEG in case there are any complications. She also said it’s quite invasive and very painful. Surprisingly she said it causes more pain in smaller people.

The next thing a nurse came and told me I could go home after all and that Danika had arranged for someone to come to my house at 9am tomorrow. Despite the early start, this pleased me. The next thing to happen was that Danika came back and said she’d found a nurse to give me some training who would come to me at 4pm today. I’m still waiting but hoping that she shows up soon and I can be in a place of much more comfort. The staff here are lovely but there’s no place like home.

When I was taken into theatre yesterday, I had two lovely anaesthetists. The consultant who saw me last time and another registrar. They tried to cannulate me twice. They are both really experienced women but as they didn’t succeed. This meant they had to use my Hickman Line for the anaesthetic. They don’t like doing it because of the risk of infection and also the speed of uptake of the drugs. I didn’t know anything about it. I didn’t get that nice drifting feeling or anything. One minute I was awake and then nothing till I came round.

Have just had training from a lovely endoscopy nurse. I’ve been told loudly and clearly I have a surgical wound and it is gonna hurt. She loosened the plate slightly as the swelling was making it too tight as you can see.

I’m not allowed to get the wound wet for 2 weeks. After that I can bathe and shower as normal apart from keeping my Hickman out of the water. What they have done is put in the PEG which sits inside my stomach and then inside the PEG tube they have put a Jejunum tube extension which means the feed goes directly into my small bowel. This should mean less nausea and vomiting. Fingers crossed. I also have to have it for at least 3 months but maybe 2 years. Heavens above, I hope not.

So yet another experience to add to my rich array of travelling with cancer and it’s complications. I wonder what’s next on the horizon?

Echos of the years

I’m writing this blog from bed 1 on Davidson Ward in my second home at Kings College Hospital. I’ve come in tonight pre planned to have my NJ tube removed and a PEG inserted tomorrow. I’m very much hoping it’s only going to be an over night stay. Fingers crossed for no complications.

Strangely I’m in a room I’ve been in before. I shared this 2 bed bay a few years ago with a lovely young woman called Sam. She was only 26 when she died of her blood cancer leaving two small children behind. We shared 5 weeks and got to know each other intimately in this small space. She loved all the soap operas. It’s strange being here and feeling the echo of her presence all these years later. Tonight I have the space to myself.

There are so many horrible things you have to endure when you are diagnosed with MDS. I’ve had my NJ tube in since 24 July. I’ve done really well to keep the tube patent all this time. I shall be very pleased to get it off my face and not have people stare. I will miss my conversations with children though about being an astronaut.

I can’t say I’m looking forward to a hole being made in the outside of my tummy for a tube to be place directly into my stomach instead. It sounds a bit ouchy at first. I’m told once it’s healed you can still have a bath so at least I won’t smell for long. Lol.

I really hope they don’t keep me too long and that I’m on the list early. The worst thing about all these things is the amount of hanging around you have to do.

I will keep you all posted as and when I’m able to. In the meantime please pray for Sam and the family she left behind and all others struggling with blood cancers. Today is the last day of blood cancer awareness month and #makebloodcancervisible. This post is dedicated to the army of carers, partners, family and friends who give such unstinting support to those of us affected by blood cancer. You enrich my life no end and I couldn’t do it without you.

A surprising blood test

Last week I had hospital appointments on 4 days out of five days. Today I had two appointments and tomorrow I have two appointments. Yesterday I had one. So that’s 9 appointments in the last 2 weeks. It’s all go. I certainly know how to live. Lol. 

One of my results was abnormally high today and the consultant was much perplexed. I have a cholesterol of 10. Now bearing in mind that I haven’t eaten a meal since June that’s a bit surprising to say the least. I like to keep the medics on their toes but I’m not sure I like the idea of high cholesterol. Do any of my medical friends have any idea why this is a problem for me? It’s certainly not diet related. 

I’ve been thinking about all the ways my body let’s me know it’s not that happy and/or is showing signs of the struggle I’m engaged in. My big toenails are still in the process of healing after my nail fold surgery. My ankles still swell slightly but it has improved. My skin is very itchy and dry. I get pain in my muscles and joints especially my legs. I get horrible pains in my tummy that can wake me in the middle of the night and I often have an urgent need for the loo even if I’m out. I have a slightly sore throat from the NJ tube. I have sores in my mouth. I have dry eyes and dry mouth. I have regular headaches. I have zilch appetite and often feel sick. I can’t walk far. I sleep for around 10/11 hours. I am often pale to the point of translucent. I get breathless easily and I’m as deaf as a post without my hearing aids. Wow that’s some list. 

Despite all that, I struggle on and make the most of it. I’m really hoping to be able to catch up with friends and family and do some nice things. All I need is a few less hospital appointments so that I have the space needed to socialise. 

I’m very proud of Sam, Jen and who have all joined the bone marrow donor registry. As September is blood cancer awareness month I wanted to highlight the amazing gift that these 3 may give one day. Life is precious and to be able to save a life must be the ultimate buzz. I know Kaz is also looking into it. You are all stars. 

Please consider donating blood or you bone marrow. You never know who might need it next. #makebloodcancervisible #mds 

World Marrow Donor Day

Yesterday was World marrow donor day. My little skin and blister Gail was my donor and life saver.

We didn’t have it easy when we were kids and were often left to our own devices. As I was the older one my job was always to protect Gail. One day she came home to me crying because one of the local bullies had been picking on her. I came out to see if I could see him. I was eating an apple at the time. When the bully saw me he started to run. I threw my apple at him and it hit him square in the back of his head and took him off his feet. He didn’t pick on Gail again. Lol.

Gail has paid me back many times over by her wonderful and generous gift of her stem cells. The process of her becoming a donor was that she had a blood test to see if she was a match. Once it was confirmed she was compatible she then had some health checks and a talk with a dr to make sure she wasn’t under pressure to donate. After that she had to have GCSF injections for a week. These injections over stimulate the bone marrow to produce extra stem cells.

The harvesting of cells comes next. This was done by Gail being attached to a machine with cannulas in each arm. They took her blood out of one arm, separated the stem cells then gave her back the rest. She had to do this for about 5 hours on 2 consecutive days. The next day I was given the cells they collected.

It’s an amazing process to go through and incredible to think that Gail now also lives inside of me hopefully fixing all my wonky cells.

In the UK people can join the Anthony Nolan register is they are 18-30 and the DKMS register if they are up to 55. The gift of life is one of the most precious things you can give. How amazing it must feel to save a life. Please consider joining the register yourself or encouraging others to do so.

Gail you are a super star and I love you very much. Words could never express all that I feel. I hope you know how special you are! Xx

One size fits all

Today was a long and painful day. I got to Kings at around 10.30am. It was ages before they called me in and took some blood from me. What made the waiting more bearable was a lovely chat with Diana and Pete. Really nice to see your smiley faces. 

Bloods came back in the safe zone so I was taken to the catheter theatre to have my new Hickman Line. It was the same consultant I had seen last time. For those who don’t remember, what happened last time was I was laying on the operating table and all prepped when the consultant realised that the right side of my chest was occluded. In other words blocked from a previous Hickman line that went wrong. He then said as he had to tunnel across my chest from the left he needed a longer line. That meant the procedure was abandoned that day as they couldn’t find another line that was compatible with ECP. 

Today was the next appointment I was given. I turned up with my longer line. The theatre staff remembered me. When you have these lines put in you are lying flat on your back. You have to look to the right and keep your head on the side. A sterile drape is put over your chest and face and then they tent it. All you can see is the drape and the eerie light it creates. 

They then clean your chest with the coldest alcohol gel. Brrr. Next comes about 8 bee stings in the form of the local anaesthetic. Then they make a few cuts and thread a wire through from near my left shoulder to the top of the heart. The consultant was puffing and panting and he said there was a lot of scar tissue. He was putting a lot of pressure on me as he guided it over my chest. As he was doing this I suddenly experienced the most excruciating chest pain and my pulse started racing. The consultant was good and took some extra ob’s and fiddled some more with the line. Eventually the pain eased off. It was really unpleasant and gave me a glimpse of what it must be like to have a heart attack. The consultant then said that the line was too long and needed to be changed. I could’ve swung for him if I’d been able to move. I said i brought a shorter one last time and you wouldn’t do it. He said I was small and the other line may be problematic if left. They then left me for about 40mins while they tried to find a shorter line that was compatible with ECP. By the time they tracked one down I needed the bee stings all over again so they could remove the long line and replace with one that fitted better. 

While I was lying there I could feel the blood trickling down my shoulder and back. It was warm and felt weird. I ended up looking like I had a head wound. No wonder I was being stared at when I popped into M&S on the way home. 

At one point I had to say to the consultant was there an chance he could be a bit gentler. Maybe because they can’t see our faces they don’t realise how rough they are being. I also know it’s difficult when there is so much scarring to get through. 

I’m in quite a lot of pain tonight. It’s a deep internal ache. I know it won’t last long but for now I hope I can prop my self in a comfy position and get some lovely sleep. 

Back with a bang

I’m well and truly back from my holiday. It was bliss to have nearly 3 weeks without any needles or medics apart from the occasional phone call checking up on me. As you can see from the pictures, the view from my window was spectacular.

I came back to a stack of post 7 of which were letters from the hospital. There were also 3 messages on the answerphone, 2 of which were from the hospital. Do you think they missed me? Lol.

I crawled into bed at 3am Fri morning after the long journey from Holyhead. I then had to be at Guys for 3pm for Physio and 4.30pm for ECP. I was back at Guys again today for 12.30pm.

On top of all this activity my NJ tube has blocked. Sigh. So after ECP today I popped into the urgent care centre at Guys but sadly they couldn’t help. So I drove home and have been at my local A&E ever since.

I met a lovely young dr and explained all that I had tried to unblock the tube and said I was aware there was a drug that could be put down the tube to unblock it. He was good and listened to me and went off to the gastro ward to find the medication needed. It’s called Clod buster. Lol. It smells disgusting. It was funny watching him read the instructions and follow the step by step guide. Anyway he tried to squeeze the medicine in. Then it had to be left for an hour and then flushed. Sadly it didn’t work. He has now put in a second lot and again I have to wait for another hour. That takes me round to 9.15pm. He mentioned they might admit me if they can’t unblock it. I said no need as I can drink it’s just nutrition that’s a problem. Fingers crossed everyone that this dose works.

It’s amazing to think that I haven’t even unpacked fully yet and I’ve already had 3 hospital appointments and a lengthy spell in A&E. Oh the joys of living with cancer and it’s complications! Good job I’m an easy going person.

When I had my ECP yesterday the 2 nurses on were really great and worked together and managed to get 2 cannulas in with only a little bit of fiddling. Today sadly took 5 attempts and an hour before we had 2 working cannulas. I think the staff will be very pleased for me to have my new Hickman Line back in situ.

Tomorrow I’m gonna chill and do something nice because Monday I have a haematology review in the morning and go to theatre in the afternoon for my new line.

When so much time and energy is taken up with hospital appointments it can be really easy to lose yourself and just become a patient. I don’t ever want to just be a patient. I am also a partner, a mother, a grandmother, a sister, an auntie, a cousin, a niece, a friend and neighbour. I have to look after my emotional and spiritual well-being as well as my physical body. I need fun and laughter in my life and I need to know what’s going on in my family and friends lives. I never want it to be just about me. I might be frail at times but I can still listen and be alongside people.

This month is blood cancer awareness month. I dedicate this blog to all of us who struggle to live with various blood cancers but don’t want that to totally define us. Also to all of us who strive to achieve quality of life despite the obstacles that keep getting thrown in our paths. Keep going people and do something unexpected and fun. Xx

Blood cancer awareness month 2018

September is blood cancer awareness month. My cancer was so unusual at the time that it took 2 years to formally diagnose me.  Myelo Dysplastic Syndrome (MDS) was something I had never heard of. It took a while to get my head around the implications of it all. 

At first I didn’t want to tell people I had cancer. I used to say “I have an unusual blood problem” I didn’t want to be treated any differently. I have always been fiercely independent and didn’t want people treating me differently. 

Over the next 18 years I have grown close with my MDS diagnosis. I have had a transplant and now also have to deal with the horrors of Graft Verses Host Disease (GVHD). I have learned to accept that I need an extra hand sometimes and that life, at present, has to be lead at a different pace. 

Would you know what the early signs of blood cancer are? They are often non-specific and could be caused by a number of things. It’s worth checking with your GP if you are feeling any of the following: fatigued, breathless, bruising easily, night sweats, or repeat infections. 

The other amazing thing you can do is become a blood donor or go on one of the registers to become a bone marrow donor. Anthony Nolan take people aged 18-30 and Delete Blood Cancer take 30-55 year olds. If you can’t do this for ill health reasons or age then please encourage those around you to. 

My little sister Gail was my life saver. I will never be able to repay her for the gift of life she gave me. Do you want to join her and become a life saver? It’s easy to do and imagine how amazing you would feel. 

#makebloodcancervisible #bloodcancerawarenessmonth #MDS

Rebel Rev becomes an astronaut

I’m having a lovely time in the mountains in Ireland. Not a medic or needle in sight. Bliss. Maybe my failed cannula bruises may have healed by the time I get back to London. 

It’s weird wandering around with a tube coming out of my nose. People react in different ways. Some take it in their stride and make eye contact and smile. Others glance when they think I’m not looking and look away when I raise my eyes. Some completely avoid looking at me. And some overcompensate and stare. 

The tube makes people think I’m sicker than I am. With my feed tucked in my rucksack on my back and the tube running from there into the one in my nose makes it look like I’m an astronaut. That’s what I tell the kids anyway. One child walked around my table twice to get a good look at me early. I just smile. No point letting in wind me up. 

Tomorrow is my grandsons birthday. Hopefully the day will be good and we can go and have some fun. 

Hope you are having fun where ever you are too. 

Rebel Rev has a frustrating day

Dear All

Thank you for holding your breath with me today. It’s been a really weird day. 

I got to the hospital at 9am. Yuck! I went to Haematology Outpatients (HOP) and had a blood test and check over. I was finally sent for to go the the angiotheatre at 12pm. I was changed into a gown and had more obs done. The consultant came and I explained that I had had a Hickman line before and as a result the right side became occluded. He said he would check. 

Another doctor came to take consent. He was a very serious man and talked about the risk of pain, infection, bleeding, punctured lung, blood clot, but not to worry if things go seriously wrong they have the expertise and equipment to be able to cope with any problems. Oh my days! Good job I’m not an anxious type of person. I was taken into theatre and wired up to a monitor. 

The consultant came in and did an ultrasound of my neck and chest. He said that the right hand side was still occluded and it was likely to be that way permanently. He explained he would go in through the left again where the other line had been removed the week before. Then he looked at the Hickman I had been given and he said it was no good because it was a right sided line and he needed a longer left sided line. 

The nurses then tried to source the correct line. I explained that they normally came from Guys. I was eventually let up from the operating table and waited in a chair. At 3pm they said it would have to be rescheduled as they couldn’t get a line today. I was a bit peeved to say the least. Then I thought about the fact that it would mean I could have a decent bath and shower for the next few weeks and not have to keep my chest dry. Also I won’t need to find someone to change the dressing every week. Every cloud has a silver lining. 

I was taken back to HOP where i had another chat with my nurse specialist who said based on today’s bloods she was happy for me to go to Ireland as long as I’m sensible. That might be a challenge. I’m really pleased about that. 

I then went over to dermatology where they had arranged for me to see a dermatologist after the itching episode. When I arrived the receptionist was so kind. When she realised I’d been in the hospital since 9am she went off and made me a lovely cup of tea. What a star. 

After this I saw a lovely young woman who was very honest with me and said it was an awful symptom and was really difficult to treat. She gave me some more lotions and potions and some advice for if it happens again. 

I am slightly scared it will happen again as it was so awful but at least I feel like I now have a plan. 

I have ECP tomorrow and Saturday. They are going to run when they see me and realise they have to get 2 cannula into my very scarred and crap veins. I wonder how many attempts it’s going to take. As you know I’m used to dealing with pricks but I’d rather not. Lol. 

Thank you for your continued support, prayers and encouragement. It all helps in this most arduous of experiences. 

Who knew an itch could be so severe

Well here is my update for those who like to keep up with me and hope and pray in the background.

I came out of hospital on thurs after 4 weeks and 3 days incarceration in that tiny hot room.

Friday night, much to the shock and surprise of my long suffering partner, I asked to be taken to A&E. I never voluntarily go to A&E so it just shows what a state I was in. The problem that took me there was the most excruciating all over itching I have ever experienced. I was beside myself. I couldn’t talk or sit still. I tried to get in the bath with my PJs on. I got in a cold bath but it didn’t help. I wrapped my legs in wet towels but that didnt help either. I used cool packs from the fridge, moisturisers and steroid cream - nothing worked. I doubled up on the very strong anti itch medicine I had been given before and even that didn’t stop it. It took 6 hours of agony to subside. You wouldn’t think such an innocent thing like an itch could create such a huge problem. I’m now having to take so much medication to keep it at bay that I can’t drive. I’m finding that really difficult. If anyone has any tips for dealing with extreme itching I’d love to know what works for you.

I’m managing my feeds at home relatively well. My biggest problem is I have to have 1200mls but the bottles only come in 500mls. This means a change over in the early hours. It’s like torture having to wake every night. Like having a baby, sort the feed then back to sleep! Lol

Tomorrow I’m having a new Hickman Line inserted. The one that was removed is healing nicely. I can’t say I’m looking forward to it. It’s like being stung by a swarm of bees as they give you all the local anaesthetic injections. I had 5 to get this one out. Each in a different place so you feel each one. I wonder how many it will take tomorrow?

I am also going to be reviewed by the haematology team and will hopefully know whether I can go on my planned holiday to Ireland. Please keep everything crossed that every aspect of what i must endure goes smoothly.

Rebel Rev is stir crazy

Hello Everyone,

Another glorious day. I managed to get out for a bit with Maggie and Annie. We went into Ruskin Park and came across a trapeze teaching session. It looked such fun and at £25 for two hours isn’t badly priced. 

I’m saw the consultant this morning and she dashed my hopes for going home tomorrow. She said it would be a little while longer. Whatever that means. She is going to increase my immunosuppression drug in a bid to calm the GVHD. I’m also to have a new Hickman Line put in before my next round of ECP. What joy. 

The nurses have been amazing the last couple of days. It started with an inexperienced nurse giving me my medication too quickly down the tube. That meant I spent the rest of the morning throwing up. Since then I’ve been sick after having meds but not as much. The nurses have been giving me meds throughout the day instead of all in one go. It’s harder for them but they can see it’s best for me. 

I am definitely going a bit stir crazy after a month in this hot little room.  Keep the prayers and positive vibes going that I get out of here soon. 

Hope you are having fun and that you have found some cool places to hang out. Xx

Rebel Rev is crap literally...

Hi Everyone,

The last few days have been a real challenge. I had my 2nd day of ECP yesterday and my line has continued to play up. In the end they had to put a cannula in. It took them 3 attempts but they got there in the end. They have decided enough is enough and I have to have a new line in. Oh what joy. They are also considering putting me on weekly ECP instead of fortnightly until this blip has subsided. 

My gut is still very inflamed and I’m not absorbing much. They gave me a two day break from the feed but I still had to have all my medicine via my tube. It’s not long after that goes in that I end up either throwing up or running to the loo or even worse both! I am so exhausted with it all. Today is the first day I haven’t got dressed. 

I’ve been on a huge dose of anti diarrhoea medication and so far it hasn’t made a difference. They have doubled the dose now. Oh my days! 

The plan is to up the medication until things are being absorbed and up the feed until it can be tolerated and then wean the TPN. They would still like this to happen in order for me to go home next week. Then it can all be managed as an outpatient. 

I’ve told them I’m worried as I have a holiday booked in a couple of weeks and I really don’t want to lose all that money that’s been paid for the fare. I’ve already lost £200 due to not being able to attend a weekend I had booked. I can’t get insurance just now so can’t claim it back. 

Please keep the prayers and positive thoughts coming my way and visualise me getting over the the Emerald Isle and breathing in the fresh mountain air. 

I do appreciate all the visits and messages and pressies and cards. You are a great bunch of people and I am blessed by your presence in my life. 

Rebel Rev bigs up the NHS

For those that like to keep up with me here is the latest. 

I had some lovely surprise visits from Bev and Janet Nye as well as Tina Fowler who had been to clinic. It was so nice to see them. Us MDS patients are pretty good at supporting each other. Thank you for taking the time to catch up. 

I’m still not maintaining the feed and as a result am continuously being topped up with various electrolytes. They had hoped to wean the TPN down further but this morning after a long debate with the various specialists they have decided to slow the feed down and increase the TPN. Sigh. There is no chance of me getting out of here while I still need TPN support. 

The last lot of blood I had hasn’t lasted long and they have needed to give me another top up. Thank you to the amazing person who donated this little bag of life to me. Without you being willing to have a few moments of discomfort, I would not survive. Your generous gift is gladly received and very much appreciated. 

The nurses and doctors and allied healthcare professionals are working really hard to get me back on an even keel. Their kindness and compassion despite the daily challenges is outstanding. While my night nurse was giving me my last lot of medication last night and also hanging a new bag of TPN, he got called to deal with an emergency in the room next door. Between 10 and 2am  staff worked tirelessly to save their patient. The stream of doctors, nurses, radiographer, and probably others was endless  going past my door. In a crisis you know you are in safe hands with our NHS. Another nurse came from an adjoining ward to finish my medication at 00.45am. It’s good the way the team pulls together at times like that and despite the damage that austerity has done, nurses find their way round the system. You have my respect. 

Of course not everything is smooth sailing when you are an in patient. Today I’ve been told that because they have used my ECP line for TPN that it now can’t be used for ECP. Apparently TPN has to be given on a dedicated lumen that cant be shared with anything else because of the infection risk. They are now scratching their heads as to how they are going to sort it. I guess for me it means I may have to put up with being stabbed several times until they get a cannula that will work. 

The other irritation is that despite giving them 2 separate samples in different weeks they still need to test for CDif before I can be finally given some medicine to slow my apparently badly inflamed gut. They have tested for loads of other stuff including norovirus but forgot this one. Let’s hope they get the results soon. 

Despite these challenges I still think the NHS is one of the greatest achievements that Britain has ever created. We need to work hard to protect it and support the amazing individuals that work in it. I’m not saying the system can’t be improved in places. All things need to be reviewed at times but for the women and men that give their time, talents and professionalism to keep people like me alive and to try and give me back a bit a quality of life - I salute you all. Thank you doesn’t seem to cut it but you know it comes from a very grateful heart. Rebel