Thursday 28 February 2019

Counting the hours

Well I don’t think it could be more possible to have two such different days.

Yesterday I had the pleasure of doing a 2 hour chaplaincy session in Canterbury Cathedral. During the month of February all the chairs are taken out so you can see the cathedral in all its glory the way the original pilgrims would have encountered the building. I have to pinch myself as I climb into the pulpit to lead the prayers on the hour. How did this street urchin end up in such an amazing place?

I lit a candle in the chapel where Thomas was martyred. This is my custom each time I’m on the rota. It’s a way to show that no amount of darkness can extinguish the light of even one tiny candle. I also do it to offer the conversations I’ve had to God before I leave too. Yesterday I collected tears from several people and it was good to feel useful.

Today was totally different. I went to Kings to see if I needed a blood transfusion. I got there at 12.45pm. I had a blood test to see how anaemic I was. I then went to find some lunch. I came back to the unit an hour later. At 4pm I was still waiting. I was told my counts had dropped to 81. Normal is 120 - 150. Mine has to be kept above 94 so that I can have ECP.

I don’t know what went wrong today but it was nearly 7pm before the blood came from the blood bank. It seems they were on a go slow. The nurses kept chasing but it was just one of those days. I didn’t get home till 9.30pm. It’s a bit late to then be eating and taking medications but some days are just like that. I could’ve got really irritated.  I could’ve complained. I could’ve made it clear how frustrating it is to have to wait so long. Ultimately none of those strategies would’ve helped me. Instead I kept myself as occupied as I could on my iPad and iPhone and spoke to the people around me. I had no control over the timings but I could keep my attitude in check. By doing that I managed to have a fruitful afternoon catching up with the lovely and talented Patient Liaison Sophie and starting to write a new article for the website or newsletter.

It may have taken over 9 hours to get my top up of blood today but I am extremely grateful for the fact that I live in a country that provides this as a resource and that I can accept the donation knowing it was given altruistically and safely and by a system that doesnt exploit anyone.   If you donated A- blood and it was destined for a London hospital then you may have joined my life saving team today. Whoever you are, thank you. I will use your precious red blood cells wisely and they are gratefully received.

Tomorrow I’m back at Guys Cancer Centre for 2 days of ECP. It’s a heavy week medically but I shall also make sure I get out in the sunshine, even if it’s only for 30mins. Wherever you are and whatever you’re up to may you find the strength to endure.








Saturday 23 February 2019

Robo Rev reveals the tubes

I’ve been thinking lately about the invisible nature of so much that those of us with blood cancer or Graft Verses Host Disease endure.  

When I’m out in my mobility scooter, as per the picture, people stare quite a lot. I suppose it’s my magnetic personality. Lol. It’s also because so often I don’t “look” ill. If people were able to see beneath the many layers I wear, they would have a different impression. As you can see with all my tubes I look like Robo Rev!

If I go through my body and it’s ailments these are the things you can’t see beyond my smile:

Painful feet and toes
Stiff ankles
Sore knees
Painful and stiff hips
Stomach ache
D&V
Swollen legs and ankles
Swollen and painful hands
Back ache
Stiff and painful shoulders
Neck pain and stiffness
Jaw pain and stiffness
Sores in mouth
Sore throat
Tooth ache
Very itchy skin
Low haemoglobin
Bronchiolitis
Dry eyes and mouth
Serious hearing loss
Constant nausea

I don’t very often write like this because it’s not me to just concentrate on all that’s wrong and all the things I can’t do. Sometimes though, it’s important to give the whole picture, so that those that look at me funny when I park with my blue badge, realise that there is so much more to people’s illnesses and disabilities than the eye can see.

When I saw my consultant this week I was told that they had been talking about me and trying to come up with a plan. The current idea is that they may start me on Rituximab. This is given via a drip once a week for 4 weeks initially. If that’s not good there is also the possibility of inflixamab. They are less keen on that because there are more side effects. The other avenue they are exploring is a new drug not licensed yet. They may ask for me to receive this on compassionate grounds. They are going to discuss all the options at their MDM and let me know in a couple of weeks.

In the meantime they have the results of my latest chest CT. Apparently the right side is better but the left side is worse so I still have to take my lung medicine. They have booked me in for another lung function test to assess how much damage, if any, has occurred due to the recent infection as well as the lung GvHD. The booking of this test has not been straight forward. I received a letter telling me I had failed to attend an appointment on Monday. Well I only saw the consultant Tuesday who requested it, so I could not have known about an appointment before that. I rang and explained and the man rebooked me for the day of my next clinic. He said he didn’t understand why I hadn’t received a letter or text about the missed appointment. All I could do was say I hadn’t and I’m normally very good at attending and juggling all my various appointments.

Later that day the same man rang me again and said that he has spoken to Haematology and they wanted me to have the test sooner than he had booked it. He offered me another date but I explained I couldn’t do that day as I was at Guys for ECP at the same time he was asking me to attend Kings. He said no worries we can keep the original appointment. I hung up wondering what it was all about and why he didn’t try any other time.

The next piece of the saga came in the post today when I received a letter telling me my appointment was on the day I can’t do. Grrrr! As it’s the weekend I couldn’t ring so will have to follow up on Monday. It’s so frustrating. Hey ho, that’s life.

Next week I have lots of appointments starting with a blood transfusion on Tuesday. You have to be really on the ball to manage all these commitments and competing demands. It’s almost a full time job in its own right.

I saw the Archdeacon this week and was saying how hard I find not being able to work. I can’t apply for a job though while I’m attending the hospital sometimes 4 times in a week.

Oh well I will just have to find other mischief to get up to. If you have any suggestions I’m all ears.

Sending you all some love and hugs for wherever you need it.



Tuesday 12 February 2019

Feeling the light and love

Picked up my new bins this morning. What do you reckon? 

I’ve arrived at Kings. The place is heaving. Only another 50 people in front of me for a blood test! Let’s hope they speed through them. 

An update on the fantastic fundraising that the wonderful Lyn and Richard did. You have all now helped me get 2 pairs of glasses. Yesterday I purchased a new battery for my mobility scooter. It’s several years old now and no longer holds its charge. Bit like me really. Lol. Thanks decided as you had been so lovely that I would finally get a replacement. Again it’s just part of the hidden cost of cancer. The new battery cost £128. Hopefully it will last a good few years and keep me as independent as I can be. 

My final extravagant purchase was some magnesium that you roll on to your skin. Apparently it’s absorbed better this way. Regular readers of my blog will know that you often need magnesium infusions. I don’t like them because they make you feel really hot while it’s being dropped in. If I take is via my PEG or orally it upsets my tummy. I spent £8 on this roll on Magnesium that on the websites get very good reviews. I will let you know if it boosts my levels. 

Still got 36 people in front of me. Sigh...

My GvHD seems to be playing up just now. I have sores in my mouth. As said in my last post my appetite has disappeared. My skin is really itchy and my joints ache like mad. Apart from that I’m fine. Lol. Let’s hope whoever I see today has some answers as to why I feel so rubbish. 


Whatever you’re up to I hope it is sprinkled with light, sparkles, love and hugs. Xx

Sunday 10 February 2019

Steroids a necessary evil

Hi Everyone,

It’s been a funny week. I haven’t had any hospital appointments. That doesn’t happen very often. Next week I have 3 appointments. I’m glad I’m being reviewed in clinic on tues. my appetite has been non existent for this last week. I think the problem is the lack of steroids. I’ve reduced my Budesonide to one tablet a day. The consultant is really keen that I come off them because steroids make you prone to infection. I have done as he asked but now have no appetite and the pain and nausea is worse. It’s a catch 22. I wonder if there is a solution to it.

I continue to feel exhausted and chronically tired. It has a horrible impact feeling like you are dragging yourself around all the time.

I also have some treats though. Last night a friend couldn’t use some theatre tickets. I benefitted from this and saw the new Take That play called The Band. It was excellent and I would highly recommend it.

Wherever you are and whatever you are up to may you have lots of love and light and fun in your day and beyond. Keep going as some of the best days of your life haven’t happened yet.

Xx


Saturday 2 February 2019

Be the rainbow

About time I gave you all an update. I had some good news today in that the latest viral swabs have come back negative. This means I no longer have any active flu virus in me. That in turn means I don’t have to wear that horrible mask any more. I’m well pleased.

The other nice thing to happen today was my new glasses were ready for collection.   They certainly make life a little clearer. What do you think?

The glasses were possible because of the generosity of strangers, friends and family who donated to the crowd funding page called Be The Rainbow that Lyn Weston and Richard set up.

https://www.facebook.com/donate/269899513687961/?fundraiser_source=external_url


To honour what you have all done for me, as well as buy my glasses and order some sunglasses, I purchased these children’s shoes in the sale in John Lewis. That way I can always remember the two quotes I love about rainbows. “The soul would have no rainbow if the eyes had no tears” Also the one that Richard and Lyn took the page title from “Be a rainbow in someone else’s storm” I love the vibrancy of the shoes and the connection to the quotes as well as the reminder of the kindness and compassion of all of you. Thank you from the bottom of my heart.

As for how I’m doing. My poor skin is really struggling just now. It’s very itchy and dry and as you can see marks very easily. At least the top stitches are out from my Hickman Line.

I don’t have loads of energy and I still get breathless on exertion but I would say that things are improving. I’m having to be a good and patient patient.

I had 4 hospital appointments this week. Two were for ECP. I caught up with the lovely Nigel Roberts. It was nice to see him as always and share some London hospitality over a meal.

One of the other appointments was for audiology. It seems my left ear has slightly improved and this baffled the audiologist. He said i would need a referral to a consultant if my hearing kept fluctuating the way it was. That he has never seen that before and it’s highly unusual. I throw it out to you. Have any of you had hearing tests that have shown things getting worse and getting better without intervention apart from hearing aids.

The other hospital appointment was with the pain clinic. I spoke to the consultant about possible clinical trials but she said she wasn’t aware of any going on just now. She suggested I increased the synthetic cannabis to see if that improved the pain and nausea and stimulated my appetite. I’d rather not but it might be worth giving it a go.

Today I popped to the shops. It’s my granddaughters birthday this week and I wanted to pick up a couple of bits. This horrible man pulled into the disabled bay I was waiting to go into and didn’t display a blue badge and when my partner challenged him, he told us we could “jog on” Charming eh? I leave you with a poem I wrote to try and get across to able bodied people the importance of leaving disabled bays for those who need them. I’m not the best poet in the world but this is heartfelt and illustrative of the challenges of living a life differently abled.

Look at me by Kes Grant

Look at me and what do you see
A woman walking slowly with a cane
Have you ever stopped and thought
What gives her the pain

Look at me and what do you see
A middle aged woman with a glint in her eye
If it wasn’t for her sister
Then she would have died

Look at me and what do you see
Many layers and colours in different hues
All disguising and covering
Life saving tubes.

Look at me and what do you see
A heathy soul with a wink and a smile
Who has a plateful of tablets
But still walks less than a mile

Look at me and what do you see
Someone deserving of her blue badge and car?
Without life saving treatment
She would not get very far

Look at me and what do you see
Remember me when you are tempted
Don’t give in to that and leave the space free
Or else you leave me with lots lamented

Look at me and what do you see
I live with cancer and many other issues
Want to swap my life and blue badge
For your legs and a space with out any misuses

https://www.facebook.com/donate/269899513687961/?fundraiser_source=external_url