For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life. For those of you who aren't, here's a quick summary. I'm 51 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gives me a 3+3 on the Gleason scale. I'm now on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8. My latest PSA test in August 2014 it was back up to 4.0 was a slight improvement, in other words the downward trend has slightly reverseed. I've no symptoms and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?
Is it really six months since the last installment? Well I suppose that as nothing much has happened, not too surprising. Yesterday however was another 'episode' in the saga. At 9.20 I had an appointment for my MRI scan. Off I went to Barnet General. Have you ever had an MRI scan? Since my cancer diagnosis, I've discovered all sorts of aspects of the cancer landscape, none of which are very pleasant. I've spoken at length about the joys of Prostate biopsies. MRI's are the other side of the equation in monitoring. This was my 2nd for Prostate Cancer. Personally given the choice, I find the MRI a million times more pleasant. Having said that I am not claustrophobic, I don't suffer from panic attacks and I'm used to loud noise. I know plenty of people who find the whole thing absolutely horrific. You are put into a tube justs lightly wider than your body and subjected to a series of "scanning cycles" each of which lasts three minutes. These go on for about 20 minutes. You get some ear muffs to drown out the noise. Personally I have a strategy of using various mental exercises to amuse myself during the procedure. I keep my eyes shut and try and keep myself calm and use relaxation techniques to keep my pulse rate down. As you are not meant to move, you find you get itches and twitches in places you didn't know you had places. If you do move excessively, then they have to do the scan again.
Once the process is complete, you wait 7-10 days foryour consultant to find the results. I will be having another PSA test this week. In March I will see the consultant and get the latest update in the saga. There are a few things I'd like to share with you and discuss. Firstly, I wonder why they can't let you bring some music or an audio book in, so you have something to distract you during the procedure. There are some loud noises, but even so having some sort of focus and stimulation would be an immense help. I've heard of plenty of people who have had panic attacks in the MRI machine and I can understand why. These add to NHS costs, so surely some thought should be given to making the process more pleasant. A criticism I have of the NHS is that the "patient expereince" never seems to be near the top of the list of priorities. I suspect this really is a false economy, as it results in people avoiding procedures or freaking out during them, which results in extra costs etc.
Perhaps my biggest critcisim of the NHS is that by and large it isn't run for the benefit of the patients who use it. NHS trust boards are stuffed full of very worthy. I had a look at the board of the Royal Free Hospital Trust. To my amazement, there is no patients representative at board level. This is typical of the way we do things in this country. It seems like the last thing that the people who run things want is to actually have someone who has the patients interest at heart. I think that by law a trust board should have a minimum of one patient representative on the board and this person should be voted on by anyone who has been under treatment of the trust in the last three years. Patients should be represented at the top table and every patient should know the name of their representative and how to get in touch. This blog has featured many guest blogs by John Sullivan, who has had all manner of issues with the local NHS. I can think of no one on the planet, I'd rather want to represent me at board meetings than John. I am sure that care would be both better and ultimately cheaper with people like John on the board. Whilst John would ensure people got the treatment they deserve, I am sure he'd also make sure every penny was well spent,.
Please don't be mistaken by these comments. I am not criticising the concept of the health service. Far from it, I just want to see it protected and improved. The system we've got is infinately better than in the USA for instance, where healthcare is privatised. If you are a millionaire, then you have healthcare which is unsurpassed anywhere. If you have non chronic complaints and health insurance through work, again you will have excellent healthcare. However, if you don't for have healthcare insurance, then a far more mixed picture awaits you. Let me tell you a Tale of Twoc cancers. I have a prostate cancer of 3+3 on the Gleason scale. As it is small and not aggressive, I am on a program of what is called "active surveillance". This means that I am regularly monotored and whilst it is behaving itself, I am not considering surgery or any other treatment. The reason is that the various treatments run the risk of the dreaded triple I's - Incontinence, Impotence and Infertility. I have the option of any treatment I want at any time, but as the side effects are potentially life changing, I am in no rush, whilst my life is not under threat. With the NHS I know that I am well looked after.
I have a relation who is a US citizen and had the same condition. Non life threatening. In the UK the most likely outcome would have been active surveillance. However for my relation, there was a different consideration. A purely non clinical one. You see he had medical insurance through his wife. Her job gave the family comprehensive health care. All sounds good? Due to a few considerations, there was the possibility that his wife may in the future not work for the company. Once this situation transpired, he would be in a completely different place. So when he weighed up the pro's and con's of his situation, he opted for a radical prostatectimy. I asked him if he'd have had the operation if he was under the NHS in the UK, he said that he doubted it. Now whilst he is in the postion where he is cancer free, so has one less thing to worry about, the effects of the op have not been particularly pleasant.
Do you want to be in the situation where you base your cancer treatment plan on what your wife's job situation is? Make no mistake, there are senior political figures in both UKIP and the Conservative Party who advocate such things as progress. In the UK we take the NHS for granted. Most people in the country don't realise that the NHS is almost unique as a way of providing healthcare. British citizens are uniquely well looked after. I regularly travel to the USA and their news TV channels are always full of right wing politicians making untrue claims about the NHS. They tell lies such as "under the NHS cancer patients are denied treatment". Whilst they rightly state that some people in the UK could get far better treatment under the US model (especially millionaires), for the vast majority of the population the NHS offers something that American citizens can only dream of. Health security.
Some Conservatives talk about privatisation in terms of "making healthcare free at the point of service". What they talk about is bringing in private companies to provide the services, whilst the taxpayer pays the bills. This is one of the worst pieces of deception of all. Think it through. Suppose we hand over Barnet General to private contractors. They will seek to make as much money as possible for Shareholders. How can they do this? The answer is clear, offer a "premium service" for those who can pay. They will use the argument that this means more money in the system, but it will all go to the shareholders of the private suppliers. One of the reasons I feel so passionately about this is because when my mother was alive, she was scheduled for a critical operation to relieve the pain of spinal deterioration due to Osteoperosis. On the day before the procedure, she was informed she'd been "rescheduled". We found out that the reason was she'd been bumped so the consultant could perform a private operation. This should never happen. Sadly if we have a privatised NHS, this will become the order of the day.
There are many things I spend my life worrying about. Happily for me, due to the accident of birth of being a UK citizien, worrying about paying for medical treatment is not one of them. Thank God for the NHS.
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