Forward without reverse

It's been a strange week, I haven't been to work at all which is odd for me.

I have discovered when I'm 50/50 I can't be bothered with work yet when I'm really ill all I want is to go to work. Obviously I am the one who buries her head in the sand. As at work you haven't time to worry about what's happening with yourself.

I don't know whether I would have felt better if the radiotherapy had been set up any differently on the 3rd day and I can't exactly find that out. My kidney area has been aching a bit and I have taken extra morphine.

I have heard that 'K' has no drains in and his lung as stuck well to the chest. Also Mr Edwards has been busy lately with more operations. Although his expertise will improve more the more operations he carries out there shouldn't have to be these drastic measures. Mesothelioma shouldn't be out there.

Why did the powers of be have to lie about the amount of new cases that would occur back in the early 70's! It seems more and more of us are being diagnoses.

It's 9 months for me and I intend to be around a lot longer, but the more you hear about how it returns etc it can unnerve you. It has me.

We need these drain sites back on the radiotherapy to do lists after any type of chest opening and not be left to chance that it may or may not stop the mesothelioma growing up through them.

At least my headaches seem to have sunken into the back of my head, one anti - inflammatory on a night and what a difference it makes not waking up with a rotten headache!

I went to publish the website yesterday but the thing wouldn't load so am in a pickle. I may have to re-write the whole thing in a different programme, hopefully someone will be able to help, but not this morning as I'm going to the docs for the results of my Blood MOT.

I had an email for Dr Abtin, after sending him my first scan of the operation, his comments were
"Great Surgery" as a outsider to my current procedures I thought this very nice of him and sent it to John.

It's carers day at Newcastle on 3rd October, I hope many of you will be there.

Enjoy your week and I'll keep you posted over the website.

New Website - mesothelioma

I am currently creating a website called jansjourney.co.uk and trying to give you more information on what I did, my full history (yawn yawn) and treatments that are out there together with other websites that can help you get good information.

As you know I have lived with this disease and scanned information constantly to try and stay one step ahead of pushing up daisies. To this end I still think it's important that we keep uptodate with whatever is out there, not just for our own use but the use of others who have to battle this disease.

We know that all regions in the Uk treat this cancer differently and we also know that we should be given more choices on which route we want to go to war. I would still prefer to just have cryo and remove tumours but when you have to many you have to be radical and either take to under the surgeon's knife or chemo. Having done nearly everything apart from gene therapy (which was next) or chemoembolisation I have had quite a wide scope of treatments.

If you have anything out there that I can add to the treatment lists, I have mistletoe, spiritual healing, rekkie, IMRT, and RFA, but would like more information on them together with info I don't have.

The blog will be linked to the website and slowly I am removing info as it is being revamped for the website.

If you have anything you think will help then please email me on jan@jansjourney.co.uk

thank you in anticipation of some wonderful research

Operation Update

Hi

Have spoken to 'K's wife this morning. He is doing well and should be on the ward today. If all things go well his lung will do better than mine and stick where it's suppose to and leave no room for fluid.

There is also a young man of 35 on the ward. It shows this disease is striking the younger population a lot more than it was suppose to and what politicians said it would. At least if he has taken on the operation at such a young age he is surely fitter and more able to get through this than my generation.

We shouldn't have to contemplate having such major surgery for a cancer than shouldn't exist! It is hard on everyone and even I forget how bad it is for our partners to watch us through this disease, they live it too.

The more people who go for this surgery the better it will become and the equipment used will be modified to ensure more successes as time goes by. Even now John Edwards is on about a machine that can cut the risk of blood loss but it costs around £75,000 and isn't deemed viable if it's not used enough by the trust. That's one manager's salary and that £75,000 would only need to be spent once, not every year like a salary.

When will this Country or our NHS get its priorities right?

'K' may need to have ablation later but will know more later. In the meantime I know you are all wishing him a speedy recovery.

Update

Hi

It seems the blog has had a few visits and I know why, you have all wished 'K' a successful operation. I haven't had much of an update as I am sure you'll understand the family have more important people than me to let on how things are going.

I can tell you that 'K' made it through and it also seems like he had quite along time in surgery. We know he came through it and that's the main thing. I am sure you will all wish him well in his recovery, which is the longest journey.

For me, radiotherapy is over and hopefully that will be it for a very long time. I think I am exhausted with fighting all the time and now I may be able to step off the treadmill and enjoy myself.

As I am writing my story, as requested by my best friends several times in the past few years, I didn't realise I only had a max of nearly one year without the meso growing. I hope this operation has given me more than that otherwise this year has been pain and pain and more pain without a breather for normal everyday life. enough of me .....

.... Will update when I hear some news and if you wish to leave a message of 'K' please do and I will pass them on.

All nerves

Hi
Its really a quick note as I am on tender hooks waiting to hear about 'K'. I really hope the operation was a good one and not too long.

I am also pleased with my own radio therapy, it is nothing like the last time, admittedly 5 years ago. But it does make me tired.

My website is coming on a treat, although I am writing my story of meso in chapters, the blog will still be kept uptodate as this is in realtime whereas websites aren't dealing with current feelings etc or the lastest news on someone in my meso circle.

If you know anyone that is undergoing treatments over the next few days please spare a thought for them. Its hard fighting this disease but sometimes it makes it more worthwhile when you know that others can benefit from your own experience and thoughts of good luck.

Mesothelioma Operation

I just want to let the meso circle know that John is hopefully operating on another of my meso circle friends. I hope that all of you will put your thoughts to 'K' next Thursday and wish him a speedy recovery.

I can only hope and pray that its just his lung lining that is removed so a speedy recovery will follow. Also he hasn't had any type of surgery previously so hopefully his pain will be easier to manage.

I am sure John has mastered the skill of this operation to perfection but 'K' will still be unique as there aren't many of us around that have had this yet.

I am sure I will find out how he gets on, and hopefully he will let me publish how well he is doing once the surgery is behind him.

Read about my operation on

100% Wipe Out for Mesothelioma

which I wrote in February 2009