Tag: cancer journey

Two pints of blood please.

steveharvey55

So how am i well a couple weeks ago i had a chest infection which lead to my chemo being cancelled for a week .

I had another CT scan which showed no real change.

But it was decided to give me a blood transfusion as to help my anaemia, as per usual i thought that meant hose bucket and a change all of my blood in fact i was wrong as usual it was a pint of blood dripped into my veins heaven, so much so they gave me another two days later. i cant tell you how much that has helped i’m now pink in colour perky and definitely more energy.

Side effects ankles like balloons, stomach swollen weight gone up to 89kg down side i may have to have a drain fitted to remove exceed fluid o deep joy.

Went to therapy on the Wednesday really helpful you can never talk to much LOL.

Still struggling with stairs finding its so hard to kneel down then get up pretty impossible thats hard.

Yesterday 11th March Kim drove me to UCLH London for a meeting with Professor Bridgewater, this was arranged by Rachel my Consultant at Poole. He is a leading expect in bile duct cancer who has bloods analysed and tested, the bloods are sent to america as they cant be tested here in england the results take up to 3 weeks.

The odds are 5/1 finding a the right match but this is the senioro as i understand it.1&2 match take pill targets directly the cancer happy days. 2&3 possible trials of new drug but have to join queue, 5 back to square one. My dream in a box to America below.

A Number in a Tick Box

steveharvey55

Today, back to chemo, which really is getting like a convenience to turn up and tick the boxes. frustrated. Bloods okay yesterday, but are you diabetic? I only ask because your glucose is high. no mention of the calcium factor, obviously forgotten that. But, by the way, next time you’re in we want to test your glucose with you fasting. when i arrived today my pulse was 99 – is that usual Mr Harvey? No. is there anything I can do for it? No answer as per usual, let’s move on.

Thought we were having two chemo today. our info card for bookings told us we were, but somebody else had a different opinion. Right or wrong we are not sure as we are not given the information. Just get on with it and tick the boxes. Funny that I seem to experience extreme anxiety whenever I have anything planned to do, be it a small meeting or going to a place, it just seems to overwhelm me. Is there anything I can take for this? No answer. So, all in all, the past couple of weeks since Christmas has been indecisive. I still don’t have a real plan as to how we are moving forward I only have a brief knowledge of what we have ascertained together.

My weight has now dropped to 78kg. Wouldn’t it be nice if someone suggested a dietitian to me to add weight, or maybe I’m not supposed to add weight but just shrink. I don’t think so. My hair is still there, or thereabouts. I find it interesting every time I ask a question that needs a reaction there’s no answer, seems as though I’m ticking all the right boxes, but out of the boxes I am ticking 70% are not answered. I need help with the anxiety. do i go back to the dr? I struggle to walk. but i’m not sure the reason i struggle. Is it in my head. the anxiety needs to be addressed because I am sure this would help my demeanour. yes, i’m still positive and fighting but i don’t know what.

today before the chemo, i tested me swagger out, and it’s still there LOL. My size 36 trousers are now 34″.

we’ve had the reply from the Marsden, which has given me hope. we still need to follow up on diagnosis, has it changed. Hopefully Dr Chau will pick that up soon and Kim is emailing him.

all in all christmas was great, but it seems years away.So here we are, first week into January with no clear plan on how to move forward all we know is we are trying to fight something we don’t know what.

mood today 6/10.

song of the day: stand up for your rights bob marley

second bonus song: Billy preston – we go around in circles

thanks for all the messages and all who’ve come to visit me. much appreciated.

quote: “don’t pat a burning dog”

if you haven’t already, please donate to Maytree.org.uk

A Guest Post and a Request

steveharvey55

When the trees were looking barren in March 2008, yet to adorn their branches with blossom, and the darkness had gone on too long for me to keep putting one foot in front of the other, I sat in a huddle on a Cambridge street in the rain, weeping. I must have looked rough because some kind soul came and thrust a fiver into my hand. I tried in vain to tell them I didn’t need it and so with money in my pocket I felt poorer than I’d ever been. Even that momentary kindness didn’t reach me.

Mental health services wouldn’t help me and I was unravelling fast. With the ounce of hope I had left I called a crisis centre in London. They explained that a crisis admission could take months to happen, which seemed rather absurd, however, they told me about another place in London that offered ‘sanctuary for the suicidal’. The word sanctuary captured exactly what I felt I needed. Somewhere safe and welcoming. I called Maytree Respite Centre immediately to find out more. Based in leafy North London, in a beautiful house, they explained that they offered a free 4 night stay to suicidal people from all over the country. Volunteers were present 24 hours a day and there were therapists there to talk to, too. You could come and go as you pleased, which felt important so that I wasn’t trapped. After an assessment, I took up their offer of a stay.

What I found in this wonderful place was kindness and care of the most basic and vital kind. They sought to make genuine connections with the guests, each of whom had their own cosy bedroom, and didn’t flinch away from the despair and hopelessness we each carried there. You would be forgiven for thinking it might be a depressing place, but it was quiet and containing, and, well, ordinary. It was special for me because it didn’t put you in a bubble from the outside world as hospital can do. You were there because there was a tiny part of you that wanted to survive the unbearable and all of the volunteers and staff were invested in listening out for that as well as fronting up to the desperateness of the situation.

It wasn’t a cure, and I still struggled afterwards, but they helped me to find long-term help, which, ultimately, I owe my life to as well. It is the help that set me on the path I am on now, the help that truly helped. The compassion and empathy of the people at Maytree enabled me to hold on that bit longer. I urge anyone who is feeling suicidal to check them out because they have saved many lives. They also run a help-line service for anyone to call day or night. Their number is 020 7263 7070.

That inner darkness has given way to hues of colour, which are not all rainbows and glitter, but real tones that are as varied as the trees through the seasons.

Dad has asked that we fundraise for a mental health charity and I couldn’t recommend one more than Maytree. They are a small and unique charity and we need more of them around the country. Please give anything you can to keep them running. And if you need their help and want to talk to someone about it, then you call on me anytime, too. It’s important to pay it forward, I think.www.maytree.org.uk