It is three months since I wrote my last blog post which was about taking up cancer screening.
Since then, I have been having my cancer treatment at the Royal Free Hospital in London. I have had lots of travel, lots of examinations, lots of side effects. BUT I still have a positive message for you!!
One in two of us will get cancer sometime in our life and this blog is aimed at those of you who are newly diagnosed or if you are caring for somebody who has is having cancer treatment.
The treatment will take time and it does affect your life …. No getting away from that!
The story so far…
Six years ago I had a kidney removed when cancer of that kidney was diagnosed.
It was about this February last year that I went to my surgeon who removed my kidney six years ago.
I was well and he was expecting to discharge me from his care, but he said I had better have a scan first.
I was called back very quickly after that scan and was told that a tumour had grown in that area and that it needed more than surgery – I needed to be referred to Oncology.
It was a surprising and sobering moment !!
It was pointed out to me that my cancer cells were non clear cells (not good!!) which meant that current cancer treatments had only a 20% of slowing down the tumour growth and spread.
But God moves in mysterious ways.
That local Oncologist Consultant had an Oncologist friend about to start a Clinical Trial at the Royal Free Hospital, London in combination with a German University and a large Pharmaceutical company.
They are using two immuno-therapy drugs (they have long names but I call them Ippi and Nimmi) together for my particular situation and my screening (many tests) showed I would have a better chance of control of the cancer with this new treatment. No guarantees of course – BUT an option that I accepted even though the daunting 28 page consent form had pages of information about possible side effects.
This is the moment – you realise this is all real and life changing.
I remember thinking as I walked into the Oncology Department, that I had always hoped, that I would never have to be referred to this department. But what can you do?
BUT I was quickly surprised...
I want to take you behind the scenes a bit in this blog post and offer as much assurance as I can that you quickly realise everybody is totally on your side. The staff are very aware of the emotional pressures that show in so many different ways depending on the patient.
And I must say, I’ve been so incredibly surprised with the Oncology Department care viewed from a professional background in nursing.
My background is nursing (it was my career).
My own nursing career was very technical – typical male thing. I worked in intensive care, accident and emergency, operating theatres and urological surgical wards
All very good stuff…
Great work which I incredibly enjoyed and it gave me great satisfaction.
When we had an unconscious patient with tubes everywhere who was not able to recognise us or talk to us – there was something missing for me. Knowing the person!
The medical and nursing teams absolutely wanted in every way for that patient to survive and they did everything possible, however long was needed.
However – the moment that patients recovered from that intense work of course they moved to the rehabilitation areas of the hospital for personal care where the patients personal needs could be met.
So I got a technical impression of what nursing was all about. How wrong was I. On the whole I missed that more personal approach to caring.
What a Difference with Medical and Nursing Teams in Oncology.
As I’ve been watching in the oncology clinics and ward, I’ve seen really great care. More importantly great personalized care.
As I have sat in the waiting rooms and watched I have found myself thinking I wish I had spent some time doing this sort of nursing, solving everyday problems.
The cancer is the bug bear the nasty, nasty piece of work and the treatment unfortunately has to be aggressive to attack it.
There are different treatments, radiotherapy, chemotherapy and now the new man in the block – immuno-therapy.
This modern treatment is systematic, it’s not like the old chemotherapy which were drugs trying to kill the invading cells.
Immuno-therapy – which works inside the body to build the body’s defenses to stop the growth and spread of the tumour.
As the immuno-therapy treatment is systemic you can get side effects in all parts of your body and it is those side effects that need monitoring and solutions applied when they appear.
The problem is that – time wise – they are very random and patients need to observe and note any body changes and work with the oncology team to resolve each problem as they occur.
Some Of My Side Effects
Just a few – but typical examples.
After my first cycle of treatment I quite quickly got an itchy rash. The rashes were spread out on arms, legs, and worse, my back. Of course that meant sorting out creams, emollients etc.
Great fun getting your clothes on properly afterward with shirt sticking to your back. However – various creams gave total relief from the itching.
Easily solved – just tick it off – that was a challenge now under control.
Unbelievably – Loss Of Appetite
I love my food and yet I couldn’t – WHAT! . Nutrition is essential to assist recovery.
You know how it feels when you have eaten too much – that Christmas afternoon feel. For a couple of weeks I felt like that from day to day. My wife got me fruit in jelly, omelettes etc. But of course there is advice around and the MacMillan Cancer Support website and leaflets of volunteer staff advice at the clinic offer the answers.
They have seen them all before!
Here in the UK we have a major charity MacMillan Cancer Support and I got a nutrition leaflet from them.
In fact MacMillan is a must for all cancer issues including financial support.
My wife Babs and I also had advice from a hospital dietitian who suggested adding supplement up juices – Fortijuices and also using anti emetic for a few days.
Oh and there was lots of other good advice.
Just ask – there are answers out there for all of the challenges – get it sorted and just tick it off.
My Worst Challenge To Date – Painful and an EXPLOSION
[This should be X Rated – Constipation the subject]
Let’s lighten up and have a smile at my expense – as there are times we are pushed into abnormal situations which we would rather not be happening – but you are there – and there is no way out but to take extra measures. You will smile about it all later.
Probably because I had an issue with my nutrition I went several days without being able to go to the loo.
I will spare you the details but it got to the stage where everything was so hard and impacted and very uncomfortable.
The only way to avoid having to go to the hospital (some embarrassment for me a former nurse) to get sorted out was to go to the pharmacy and get glycerin suppositories.
The instructions on the pack were to wet and insert suppository. Lay on the bed for 15 minutes while the suppository melts.
Easy! NOT! !!
Every minute felt like five. I put the TV on to try to block out the crampy painful moments.
Five minutes… The thoughts were there – this must be like baby delivery.
Nine minutes… Wow – that was bad!!
Ten minutes… How far is is to the loo – 15 metres – why didn’t I put paper down on the carpet?
Thirteen minutes... Where is the cat – he is always laying in the corridor? Don’t fall over the cat.
Fourteen minutes and 30 secs – that will DO!!!
There is no other word to describe it – EXPLOSION!
The relief was immediate.
Sore – very sore. But utter, utter Relief.
The lesson of course had been learned. I had to sort out what laxative regime I needed to prevent a further episode like that.
The doctor’s take on it was amusing. “There are three approaches – laxatives are softeners, shovers or soft AND shove”
Anyway I have it sorted the prevention out for my next cycle of treatment – you can bet!
I have ticked it off .
Some Side Effects Will Only Found From Blood Tests
Whatever therapy treatment you are having I can assure you will be having regular blood tests which will show up other bodily changes. AND – yes they need treating.
My thyroid, renal function and liver have been affected by the immuno-therapy . I have had to empty a cupboard to get all of my medications acquired into order.
I have had to double my intake of water – which is ok except it is a bit of a problem overnight.
BUT WORSE THAN THAT!!
There can be some sacrifices and changes you may have to make.
My big one IS – what am I going to drink with my mates down the pub on a Friday evening?
I am now sampling non alcoholic beers, lager and cider.
My Cancer Treatment Also Had a Positive Side Effect on my General Health in Fact – a Pleasant Shock
I have had high blood pressure for or nearly all of my adult life a genetic gift from both of my parents I have had treatment for it as far back as I can remember.
There was a chance I would not get on to this clinical trial if my blood pressure had been so high during my screening.
Two weeks into my treatment my blood pressure dropped quite dramatically over two days – so much so that I found myself looking out for signs of internal bleeding.
My local GP has taken me off of my regular blood pressure medication and and as he had my health history he was also surprised.
Currently I have lost my florid looking face and for about four weeks the blood pressure remains low – will it last?
Very pleasant SHOCK!!!
Family, Friends and But More Importantly YOU
One of the first things you have to do when you are diagnosed with some cancer is to decide who you are going to tell. Prognoses of different cancers can vary tremendously and it all depends on your support network and your personal emotional response to your news.
Here is a good article to help you decide what is right for you. ‘Telling Friends and Family That You’ve Been Diagnosed With Cancer’
I will tell you about my own decision and the reason for my approach.
I was clear that I needed to be totally open about my cancer and was totally easy with accepting that.
After all my blog is all about physical and mental health. Well equipped as I have was a nurse for a career, have studied mental health as I have worked with Adam Eason a clinical hypnotherapist with all his teaching in a college of hypnosis AND I have been the other side of the sheets as a patient.
The patient bit I have to say is the most revealing as I fully understand that even with all my previous knowledge it is totally different to treat yourself and I found I needed as much help sorting out my side effect issues as any other patient.
My support has been exceptional and has been good for a number of reasons.
My wife and grown up children are open about whatever any of us is having to care for. I won’t go on telling you how good they are – it is just said by saying they are lovingly there.
I have told all our friends (in fact I have told the world on my blog). It makes life easier. I have tried to carry on with whatever domestically and socially. But one evening I was not feeling well, and a quick call to cancel a dinner party we had organised was not misunderstood in anyway. We have met friends whenever for walks or NOT.
Of incredibly great importance to me is my faith. My God gives me strength and hope. Friends at church pray and in fact I mentioned that I was having problems eating to a couple at Sunday morning service and on Monday they turned up with basket of fruit and a Blessing Card. Touched – YES!
I have also learned over the years of working with Hypnotherapist Adam skills to turn off that chatter in the brain. Most of that brain chatter is so negative. I have learned how to concentrate and reinforce the positive emotions. I know from working with patients all of my nursing career that those that were positive got well faster than those that worried negatively about everything. I can put on a mindfulness audio and totally relax and still the mind. What a tonic!!
What About You?
You may have a equally good set up and support OR you may NOT.
The treatments take time and you may need temporary help.
I plead with you to seek and ask for help.
Your medical practice and Macmillan’s is the place to start. They can recommend groups of people who meet with other people with long term care. Everybody and every type of cancer is different and your difficulties will need personal tailoring of care. This is what I have found the Oncology Departments are exceptionally good at.
Also – many people who are alone will worry more about the challenges at every stage. You will be more likely to see any new side effect as something awful instead of something new to get a grip off and ticked off. You will get a special phone number to use whenever necessary to talk to someone in the Oncology Department if you are needing advice.
Your Mental State
What you will find me going on and on about in my blogs is your mental health. What is going on in your head is so personal and crucial to how you accept and take on board all that important to a successful outcome to your treatment.
If you look through all of my blogs you will see that I am enthusiastic about the mental health help that can be achieved with talk therapies. Anxiety, stress, panic attacks, low self esteem, lack of confidence, insomnia, motivation etc etc can be so helped with self-hypnosis sessions recorded by clinical hypnotherapists
IN FACT I HAVE A COUPLE OF AUDIOS TO SEND YOU
I am offering anyone a couple of audios to listen to.
One is a relaxation hypnosis session and the other is a self-hypnosis for stress recording. Just contact me and I will happily send them on to you.
DO ASK – get all the help you can!
My problem was transportation. I live 150 miles from the hospital that I am getting my day care treatment in.
Going into London by car is a congestion lottery and time lottery, finding a parking space lottery.
Public transport coach – cheap but same congestion problems as car.
Train expensive because I had to travel at peak times. £115 for a hospital appointment and double that cost when Babs my wife was with me.
- To get the train I had to get up at 4:30 to get to the hospital early because the day consisted of getting bloods taken early,
- ECG then
- Doctors examination appointment later in the morning.
- All before the therapeutic drugs can be manufactured by the pharmacy department (preparation time approx two hours).
- The drugs are then delivered to the day care ward for afternoon infusion.
- My treatment infusions took about two half hours to administer.
- Then the 115 mile trip home.
At the time to travel London tubes are packed to capacity with head home commuters and so are the trains. One trip I had to travel half of the journey standing. Not ideal.
So that was not good but there was worse to come!
After my third cycle of treatment I had a set back in that the ongoing treatment had to stop as the bloods went squew whiff!
One of the treatment drugs had caused my liver to become inflammed and not functioning correctly and that need steroid treatment. The dose of steroids has to be varied depending on response and that needed bloods taken frequently – 3-4 days apart.
Travelling up to London every four days when not at my best was the prospect.
BUT guess what – as no specialist immuno-therapy treatment was to be administered the Oncology team in London organised an Oncology department in Bournemouth (a small 10 mile drive from my home) to organise those blood tests and liaise with the research team in London.
What can I say again!
Totally focused appropriate care.
I could add other personal help given but I HOPE I have made my point.
I can’t of course speak for Oncology Departments elsewhere but I expect they are similar in approach.
The story continues of course – but there are two final points I would like to make.
The treatment for my cancer started in November and as you have seen above I had a few things to get ticked off and sorted.
Big QUESTION – especially as I am on a clinical trial – IS IT WORKING
Last week I had a scan which is the only way to find out.
It is very early days but the report from the scan was really encouraging – no tumour growth or spread! We are not looking for cure of the tumour that is there – the objective is to get it under control.
Of course all cancer patients – no matter what treatment they are receiving all have the same wait and expecatation for good results. Not EASY !
We just all have to be very patient in waiting for those results
A Final Comment – Kindness
I have been to Poole Oncology Unit, Bournemouth Oncology Unit and of course my main treatment Oncology Department at the Royal Free Hospital in London with my medical team led by Dr Boletti.
In all cases they were professional and positive with hard working staff. Somehow they always made time for all of the patients – never seeming to tire from their questions.
I could go on and on, BUT I won’t.
They were always professional – giving caring attention – and giving more than can be expected.
The cancer treatment cycles in the Oncology units I have used are full of staff showing TRUE KINDNESS. That is amazing if you can imagine that this is in very busy and demanding clinics and day care wards. I appreciate all of this support with my thanks to them all. I really must add personal thank you.
My special thanks to my research nurse Anna Pejnovic who has been my real link and kept me incredibly well informed. Thanks Anna!!