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.