Tag: start of FLAIR trial treatment

Positivity, gratitude and avoiding dickheads.

Posted on by peterherbert_5311vd

Rise up this mornin’
Smiled with the risin’ sun
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Bob Marley

The first three months of a clinical trial over and I am so very grateful that other than some inflammatory response resulting in some very painful joint and muscle pain at times and a few days of sickness and diarrhoea I have been healthy and managed to remain positive throughout (even if I may have looked pretty dreadful at times).  I have actually only felt ill for a fraction of these three months.

No musings on the past today, my thoughts at the moment have turned to the present and indeed the future with this milestone in my treatment journey. 

Living with Chronic lymphocytic leukemia doesn’t mean that I step back and take it easy, no it means that I need to step up a gear, there is a lot to achieve, many plans and ideas to see through. And I am fortunate to have built a strong foundation to build on.

It does mean that I should spend time looking after myself though. By that I don’t mean focusing on the ‘work/life balance’ whatever that strange and over-used term means.

I am truly fortunate to work in an industry that I love and throw myself into all sorts of projects that I get a huge amount of fulfilment and job satisfaction out of. There are of course ups and downs and occasionally I cross paths with people who are simply in the business for selfish career progressive reasons as much as they pretend to care for what they do.

In my humble opinion these are truly the worst sort of people who would sell their gran to climb that next rung of the ladder. These people are the only ones who ever cause me to lose focus and become disillusioned. People who are best avoided where possible.

I am not saying that there is anything wrong with wanting to achieve, to be successful. It’s just the approach that some people take, spending much of their time on putting other people down rather than focusing on making themselves better at what they do.

On the whole I can say that I don’t really feel that I have ‘worked’ a day in my life (as most people would describe work) The many changes in direction and constantly welcoming change, and the huge variety of projects certainly help.

Its so very true that I have not, in the past, taken proper care of myself particularly in the area of getting enough sleep (I recently read ‘Why We Sleep’ by Matthew Walker which is a fascinating look at the effects of not sleeping enough and of not getting the ‘right’ type of sleep). I am guilty as charged.

I work in an industry that is notorious for long working hours and for example I once did a 60 hour shift to ensure a show opened in time. This is an extreme example but regular 15 hour days seven days a week were, and sometimes are still fairly normal.

Fortunately European working time directives forced the industry to take a long hard look at working practices and generally the industry has got much better. We can only hope that recent events don’t allow this to reverse direction.

I have always exercised regularly and eaten relatively healthily. Although I have a ‘sweet tooth’ stemming from poor childhood choices. For example when out for a meal I will choose my main course after deciding what desert I fancy.

I put my ongoing good health down to the ‘accidental preparation’ for this medical adventure during the past few years. Regular exercise, healthy diet and a positive attitude and  gratitude for everything I have and have achieved.

Having completed these three months I am now in maintenance!

I recently discovered that ‘maintenance’ is effectively carrying on treatment now we have reached a pinnacle to the dose of medication I am taking. I have been looking forward to getting back into the gym but it looks like the high risk of internal bleeding and bruising will continue to be a possibility so this may not be a good idea just now. 

So I am looking forward to getting back into Yoga and running (although fast walking maybe more of an accurate description) as a first step and then lets see what happens. I am also thinking of getting a bike!

‘Work’ wise we have some really interesting projects on the go and I have had a lot of time to dream up weird and wonderful ideas. Watch this space…. 

See you soon, take care, be kind…

 

There was a void…

Posted on by peterherbert_5311vd

 

 

 

Well we know where we’re going
But we don’t know where we’ve been
And we know what we’re knowing
But we can’t say what we’ve seen
And we’re not little children
And we know what we want
And the future is certain
Give us time to work it out
Road to Nowhere – Talking Heads.

There appears to be an unspoken understanding about the level of illness based on the car parking situation at the hospital.

I often arrive early for appointements and have a coffee, people watch and occasionally start up or join in conversation with strangers. There was a conversation about the cost of parking and a lady turned to me and asked how much it costs me each week? I get free parking I replied. She reached out and touched my arm, “oh I’m so very sorry” she said “how are you feeling”? 

There was a void. I time between having that first phone call from the doctor, the initial consultation and tests and obtaining a prognosis. Looking back this was the worst time. A couple of weeks of What if…?

I knew it was serious by the speed of action for the various professions at our wonderful NHS

This was now followed a period much quiet regarding communication, and a period of extreme, sometimes confused noise in my mind.

I didn’t discuss what was happening with anyone, it was a sort of ‘dirty secret’ .

I didn’t know what was going to happen so what was I going to say to anyone else? I maintained a calm approach externally whilst internally I was making plans for the worst case scenario, anything less than that, once exposed, would be a bonus.

Jan and Issy had been going to the WordCraft evenings at Bottlecraft in Hanley. Issy has been writing poetry since the age of 7, it is a passion of hers. We enrolled her into the New Vic youth drama groups at the age of 4 so she would have another circle of friends to those at school. She flourished under a culture of creativity and self expression and this early introduction to drama has stayed with her

She is now involved in after school drama groups three evenings a week. I am not sure exactly how or why she started writing poetry but I do know that she has a talent for it and wanted to go and see her take part in a Wordcraft evening.

I can find small gatherings of people like this more than a little scary. I cannot easily melt into the background if I am suddenly not feeling confident. I worried unnecessarily. 

I sat listening to people of all ages express themselves through their spoken word some funny, some sad but all thought provoking. It was, as was expressed often, a ‘safe place’. I was taken aback by the creativity from all, some clearly nervous but having what it takes to stand up and express themselves. 

Before long it was Issy’s turn and she strode up to the front full of confidence. gave an introduction to the first of two poems and delivered them both clearly and precisely without out a hint of nerves. Full of confidence about her creativity and her performance.

This was a room full of the best of people, a reminder of the incredible humanity that exists. People who I knew would help to nurture her talent should I not be able to.

following the poetry she chatted to people and ‘networked’ like she had been doing it for years, a complete natural. 

Worst case scenario thought one that evening, how do you tell your daughters that you have a terminal illness?

Worst case scenario thought two that evening,  well if it was to be I was tearfully confident that my work could be considered to be done, this young lady is ready to face the world.

This week I started the next phase of my treatment, the introduction of Ventaclax. A drug so powerful if they had got the dose wrong it could start killing the cancerous cells so quickly that my kidneys would not be able to cope and I could have immediate kidney failure. There was also the chance of allergic reactions. Comforting thoughts!

Consequently I have been in hospital a few day’s this week being observed. 

On Wednesday morning I took the first two Ventoclax tablets at the hospital, sat and waited to see what would happen.

My trial nurse decided to take my blood pressure. It was completely off the scale! 

“should we ignore that one and take it again in half an hour” she said laughing!

“good idea” I replied

Half hour later my blood pressure was normal (for me).

“I was probably the most anxious I have ever been in my life when you took it before” I said 

“you don’t show it” she replied.

“I think I did” I said…

May see you soon, take care, be kind…

 

How do you feel?

Posted on by peterherbert_5311vd

Steer your heart past the truth

You believed in yesterday

Leonard Cohen – Steer Your Way

“Hello Mr Herbert, its your doctor here, you went for a blood test this morning and I would like to get you seen again within the next 48 hours, would that be ok?”

There was a marked pause whilst I considered an appropriate response.

“nothing to be worried about just now” he said.

As so at the age of 55, perceivably in good health, swimming five mornings a week, four evenings a week in the gym, running two companies, a foster carer and father of two amazing girls my life took a new turn. A new challenge as a couple of weeks later following a range of tests I was diagnosed with Chronic lymphocytic Leukemia (CLL)

I opted to take part in a trial for the treatment of CLL and I had two main reasons for this, firstly I hate needles, always have. I have not had to divert my gaze from my arms so much in my life as I have in the past few weeks. Standard Chemotherapy is intravenous therapy (even writing the word makes me go weak at the knees) and some of the options within the trial are a tablet form of Chemotherapy. 

Secondly, selfishlessly I thought I may get better treatment (checked more often, less waiting time etc) In many ways it’s turning out to be true but as in everything I try to do I believe very much in the laws of attraction and the way you approach things will dictate the way you are treated.

So far it’s turning out to be true. 

Whilst waiting for treatment to start a number of people have asked how I feel about it.

Well the simple answer is I had absolutely no idea how I felt, I was, and I am still carrying on very much as normal.

The closest way I can put it is that over the past few years I many of my friends have been expecting their first child and I very much enjoy listening to them talking about this very exciting and  often daunting time too.

Whilst they are talking I often think to myself  ‘you have absolutely no idea how your life is going to change, its the most wonderful time however you are going to be tested beyond measure and how you handle this is the most important thing you will ever do in your life’ however I don’t say anything as I have learnt that you cannot explain, its just something they have to experience.

And that is pretty much how I feel about this cancer. (there I said it!!!) 

I put it out to the universe for one of the alternative treatments, even though one of them meant given up marmalade! (and of course alcohol) and thats the one I got.

So I am on a treatment called I & V of the FLAIR trial. If you suffer from insomnia and need some bedtime reading you can do so here. 

Day 4 and other than a few spots appearing on my face making me feel like a teenager again (no bad thing) I feel no different. 

See you soon, take care, be kind.

withalittlehelp.co.uk