Tribute to Pamela

Today was my 49 year old cousins funeral. I met up with an old friend who was still every much apart of my cousins life and it was good to hear that they were as close before her death as we all were when we were in our teens.

We forget about other's daily problems when we are battling with survival ourselves. I found out that my cousin dreaded getting old because she suffered badly from arthiritis and her back gave her a lot of pain. Pain is a very wearing and real problem. I discovered she was using heavy duty painkillers to survive, she still worked but also suffered from bipolar and other various compliants, everything other than her heart. Pam was a hippy and even at 49 I doubt she changed. I was lucky to see her when I was ill, I honestly thought how well she looked and didn't realise what she was going through, health wise. Yet I say the same about myself, quite often people use to come up and say "Don't you look well", it obviously must run in the family as usually that was when I felt my worst!

One of my brothers commented on the remark about her wanting to give up before she was too old because she couldn't stand waking up each day with pain. We who have cancer and suffer from a lot of pain feel that that's our lot and we have to get on with it, and it is wearing but I have to say I haven't wanted to die to be away from it .. well not yet anyway, although I do look forward to a day when I jump out of bed pain free!

On a brighter note I have been asked to do an interview on mesothelioma for our local paper. It all started with an article in the paper regarding a Mr Clark who died of mesothelioma. The reporter asked for anyone to respond regarding the disease. One of my friends emailed and told her to read my website and from there the interview date has been set. I can only hope something good comes out of bringing mesothelioma to the forefront again. When you think about it, mesothelioma only hits the papers usually once a year because of Action Day, so any opportunity to keep it regularly in the press can only be good.

I wish there was a miracle out there for every type of cancer, can you imagine how great it would be if we could snap our fingers and be cured? I heard such a sad story the other day and I thought I'll share it.

I lost dad's burial plot certificate so thought to ring the funeral directors. The lady was extremely helpful and we got chatting. Somehow before the end of the call I learnt her mother died young of cervical cancer, her father of bowel cancer, her brother is fighting bowel cancer which has now attacked his liver. He is the only family she has outside of her own daughter. Her brother works abroad and the sister contacted his oncologist because the brother was feeling ill, he organised a scan out in Asia and sent it home. The oncologist as told her to inform him to get chemo out there as he would be better off than coming to England for it! Once over this was the best country in the world for medicine and treatments. So it's not only us meso sufferers who are swept under the carpet (so to speak) but others as well. I was shocked when she told me this, like most of you reading this, we only ever want to be treated at home. Yes I know I have travelled to the States and some of you have or are travelling to Germany but really all we want is to have these options here.

Cancer care or indeed any type of care should be the best you can possibly receive, every tax payer and employer pays a small fortune into the NHS and yet it can't support us. I still say if they legalised drugs then all that missed tax would keep the NHS going for years to come and to be blunt in profit. How much does it cost to treat a heroin user or a crack head, yet most don't work and only cause others pain by stealing and most of the time get better treatment than those who have worked and contributed. It makes my blood boil.

My rant for the day, hopefully I will feel differently by the time I do the interview otherwise I might get my windows put out!

So my thought for today is to think of others who suffer pain every day too and feel glad to still be breathing and able to get up on a morning, even if all I do all day is complain!


Jan

Life without or with mesothelioma

It's Sunday and again I woke up feeling sickly, had a few dizzy turns again yesterday and Friday and not sure whether BP is going down again.

I'm putting the sickly feeling down to the hernia after the operation, how envious I feel of people waking up each day and not having an ache or feel sick etc. I know I shouldn't complain as after all I am alive and once I get the first 2 hours over I seem to feel a lot better. The couple of days before radiotherapy I had 3 mornings of feeling normalish - I say normalish because the bones still ached and my kidney area was tender but I felt good. I think I said I smiled for those few mornings which gave my hubby a near heart attack.

A few of my meso cirlce are going to submit stories for the website and I am so pleased at some of the responses I have had. I suffered worst case scenario (apart from dying that is) and I am sure many of you will not have had such a rotten deal, at least I hope you didn't.

It's been agreed that I stop Pilate's and on Friday, I had my back manipulated to try and release some of the tense muscles. That at least took some of the strain out of my neck.

I don't know what my next project will be but I need something to keep mesothelioma in the lime light, if we don't keep at it the government will finally sweep us all under the carpet and where will that leave the generations to come. Asbestos won't stop killing for years to come yet, how many houses still have it sitting in their lofts, soil pipes, between some walls etc. We are more into DIY and over the next 20 years I believe this disease will be even higher because houses have been worked over by the last two generations.

I took one of my brothers to help pick my fathers head stone, it's nearly 5 years and we still haven't put one on his grave. How terrible is that. Yes I can use the excuse that I have been going through treatments or recovering all this time but I should have found the time to do this important thing. I know when I die my ashes will be on the top in the spare lounge next to Jagar's and Tyke's so I have know worries unless hubby remarries and the new wife wants rid, then I guess I'll be planted in the garden along with my girls. Fingers crossed that is something that won't happen for a long long time.

One of the meso circle is off on Tuesday for results on his recent CT, I do hope he is still in remission and I know what will be going through his head right now. This will probably be one of those wasted weekends spent worrying about it.

'K' is home and under his wife's care and concern. He is suffering badly from pain and I feel for them both, being their myself, it's not a nice place but unfortunately we have to battle on. Survival really is a hard way to live daily but when you have so a noxious cancer like Mesothelioma every day is a survival day.

My Cousin, who died, apparently guaranteed a loan for someone she barely knew, he took off with the money and the loan shark came seeking her out. We believe that this caused her to have a massive heart attack due to the worry. My uncle tells me the letters he found at her house were extremely unpleasant and in his state of shock, found them extremely worrying too. I can't believe she was such a soft touch or didn't share this burden. Here we are fighting to live and she has to die over something that should never have happened. I hope the guy who took the loan suffers for the rest of his life as my cousin was such a caring person and in this case too caring.

I wanted to be bright and breezy today but when we went for our walk we found that someone had tried to smoke the badger den out in our woods! Why is man so cruel! That put me in a more sombre mood and I found myself thinking about what a rotten world we live in because of a few.

On that note I'm going to finish writing today, at least I've cleared if off my chest!

Please give a thought to all those that are suffering, positive energy and all that.

Mesothelioma - Silent and Alive

I was speaking to a lady today and she asked me how do people find out about mesothelioma or where to really look for information about it. Say if you were told someone had asbestos cancer, and I thought about it .. you do need to know the name mesothelioma to find out the information otherwise where do you look.

That's why I've called this instalment Silent and Alive, it is a silent killer with an unfamiliar name to those looking for it. I still think it should be called or classed as a Chest Cancer and then maybe it could be located easier.

I have taken that step upwards and finally feel that recovery is well and truly reaching the end, admittedly I have upped the morphine but I feel so much better in myself.

My hubby was over the moon as I am smiling again and he managed to pack me off to work again this week. I was pondering on leaving work because I felt I was being unfair to those I work for and for the people I work with, but a few minutes back in my office and all thoughts vanished.

I have also had good news about 'K', he is now home and ahead is recovery for him. I don't relish the thought of what he has to go through but I do know he is ahead of the game. 'K' didn't loose his diaphragm which means he won't get those annoying pricks in his side every time he turns his body.

I am hoping I will receive a lot of information from you all to add to the website, I may have to rename it to Mesothelioma - Our stories but until I get plenty I will leave it as jansjourney.

I do hope that I have helped others in bearing my soul, in a strange way it helped me to get through things, especially by keeping the blog updated.

I wish you all continued success in your battle with meso and will continue with the blog, hopefully now in a more upbeat way.

Mesothelioma Website Alive and kicking

Finally, after blood, sweat and tears the site has launched today. I still have a few little problems like the feedback doesn't work and I haven't the faintest how to fix it so will change the page, but I can't get back on at the moment. So if by the time you visit it may be fixed.

I would hope that some of you will send me your stories, I would really like to post them. The more information in one place the better it is.

Don't forget anything you have tried and tested in your fight with mesothelioma I would like you to email it to me so I can add that to. (Providing I get to work out how to change things)

I hope you will visit the site and I hope it may help you in some way.

site is http://www.jansjourney.co.uk/

my new email for your comments is jan@jansjourney.co.uk

All I need you is to give me your comments!

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

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.