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

Feeling Better

My Macmillan nurse called in yesterday to discuss how I was feeling and also to tell me who would be replacing my Pain management Doctor. It's strange but I feel quite the fraud as I am (fingers crossed) cancer free.

The upside is an experiment, so last night took my temazepam as my body hurt, woke up at 7.00 and took 40 mil morphine then went back to sleep for 30 minutes. I got up with no body pain but a ponding headache and feeling sick. I think tonight I will miss out the temazepam and just try morphine. If this works then maybe I will start getting some pain free life back.

On Monday I need to have another CT Scan so that I can start Radiotherapy on Wednesday. I thought the whole idea of the one in August was for that, so hope nothing is wrong. Maybe I should take that last paragraph out as I will be back in pain for a few weeks no doubt. Hope I don't get over cooked. I honestly believe this is the right thing to have done. As my lung was totally covered with this cancer and it didn't come up any drain sites before it proves to me it must work.

Have decided to put myself on the sick this week, I don't want to go into the office and pick up all the bugs still going around as I want to make sure I am in the best possible health as I can be. I know you don't need to worry about the white blood count but it would be my luck that I would get something else and then its back to "is it the radiotherapy or is it a bug" routine. Have also cancelled pilates just in case that was helping cause so much more pain.

Our little Lexi has had an operation to remove a tumour from her eye. It started as a small wart and suddenly ballooned into a large cyst. Problem is Vet called it a tumour and hubby has panicked something terrible today. It's strange watching her not knowing whether she is coming or going and hubby being over protective of her. She can't bear that buster on her head, so have wrapped her paws up in the hope she doesn't scratch. There was another one forming on her other eye so he removed that one too. Poor thing has two shaven eyes. .. no photo shoot for a while!

We have also put our names down on a waiting list for a newfoundland puppy. The Breeders let us go along and meet the family, so to speak. What beautiful dogs they are. If I had been a couple of days earlier in contacting them we could have had a 10 week old puppy but a couple called on off chance last Friday and hey they were lucky.

I think we must be mad as we are never without dog hairs on our clothes now, it is going to get much worse!

See you after the 1st of the radiotherapy, unless I hear of any news.