Updates

Dear All

Have had quite a busy time and feel guilty as I haven't updated the website or the blog recently.  I have received some wonderful information that I have to transfer on the website, alternative treatments and stories from the meso circle.

The Carers day went well although some of what we should get in way of doctors, nurses, compassion etc doesn't happen in the real world but does look good on paper.

I met a gentleman who is only on mistletoe and it has worked wonders on a tumour that had grown under his skin, his oncologist was impressed and surprised with the results.  The gentleman was having it done through the NHS.  I am waiting from him to email with the details of how he managed this and hopefully will get that posted.

I met another gentleman who was diagnosed in July and told he wouldn't be seen until End of November, thankfully he came to the day and contacted meso uk who have taken up his case.

There was plenty of room for more of us patients but I guess unless you live near this area it is far to travel but where ever these are held someone always has to make a journey.

I hadn't noticed until today but a message has been left by a lady representing accuracy on the blog, have emailed back for information.  This is the treatment of cyberknife and is now here in this country.  As soon as I get some more information that will go on the website and a link from here to it (if I work out how to do it).

I am also excited ... yes a CHEST PHYSICIAN has agreed to see me!! At last I might just have a doctor to check me over every couple of months and make sure I'm doing ok.  Whether trust will develop I'll have to wait and see.

I did an interview for the Northern Echo on Tuesday afternoon discussing the lack of knowledge on mesothelioma and the need for more understanding, treatments made available, research and of course NCARD.

It was good to see a couple of guys from the EPP club too and nice to put faces to names from the meso circle.

Debbie looked well although having to battle again for yet another oncologist .. when will this profession take heed and realise that we are the victims and shouldn't have to waste our life battling.

It was also reported that in a conference in plymouth a person said that  "meso is an old man's disease", whether it is or isn't shouldn't come into it, whether your 40, 50, 60 or older we've paid our dues now give us our life back or buy us more time.

I liked the point that we "The patients" are infact the employers of the professionals and without us they wouldn't have a job, try saying that to your specialist who isn't taking any notice of you or your predicament!  Blacklisted comes to mind.

I have promised myself a couple of hours on Saturday to update the web with my new info, so if you have any of your stories ready by then please send them to me asap on jan@jansjourney.co.uk

As always wishing you all well and keep that china man at bay

Jan

PS  'K' is doing remarkably well and has been out and about, although tiring, well ahead of me at this stage in his recovery.

Macmillan Site

Hi guys

Just a quick note, I haven't been on the new look site for a while as my link didn't work then I forgot my user name! Anyway I finally got on last night as hubby watched the football, and what a complete shock it was.  I struggled before understanding how to email, whether you had to hit private message or just reply and am even more confused now.  I sent a reply to a lady and her sister emailed me today as it went to the wrong person, how terrible do I feel as the lady it was intended for had recently found out her husband had meso.  The recipient most have thought a mad woman had been in touch!

What do you all make of the site?

By the way feeling much better, at last the days are sunny!

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!