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.