One Year Old Today - Wish I could say that for Mesothelioma!

I can't believe it's a year today that I started the blog site.  I put the hit counter on in July as I was curious to see if anyone read the blog and to my surprise you do.  I hope that through my journey of writing the blog it has helped at least one person battling this same disease.

On a bright note we turned the computer on this morning and had some wonderful photo's of the puppies, they do make you smile.  Can't believe how far both have grown and they are still only 2 weeks old, obviously Bear is the biggest .. maybe we should call him fat boy slim!  Here they are having a race, obviously not to mammy's teats as Bear is the runner up!

Considering I has been a busy week with interviews, lunches and my spa afternoon I can't believe how much energy I have.  Feel back like I did those few days in September before the radiotherapy.  Hopefully back on the way to recovery.  I wonder if I hadn't gone through the radiotherapy maybe I would have been a lot better these last few months, but I for one think the drain sites are important to get zapped and I am pleased that I did that.

I just want to thank you all for the support you have given me, especially the meso circle, it has been a tough year and I have come through it and for those out there debating on surgery, cryo, or chemicals or anything else that can be tried GOOD LUCK.  It is a hard decision on which course of action to take but follow your heart, your own instincts on what you should do are usually the best and at the end of the day it is your life and your decisions.

If the number's keep rising, which they will, money will have to be spent, as I told the interviewer the houses built up till the late 50's even some in the 60's have asbestos and lets face it how do we know what it looks like.  You do DIY, maybe your parents did, say dad rips out the old floor tiles when you were 5, the disease can stay dormant (say on the worst case) 40 years, 45 and you have mesothelioma.  It isn't a disease that can be traced to a certain date or time.  Maybe mine started when I was 5, I was 38 before any symptoms so it had 33 years to decide how it was going to attack my body.  I believe the disease will start showing up in even younger people a lot earlier, maybe the one off's of 28 will soon become the average age.  I sincerely hope not but you just never know. 

I am revamping the website as I have a few stories to publish and more on treatment but swapping pages over is baffling, Bear's mam is going to have a look when we go up next week as she writes website, and hopefully will point me in the right direction.  So please if you haven't already written something please get going, you don't have to go into to much details or give your own names, just how you think you got it, (if you know), when it started, how long till diagnosis then what treatments you have had.  They all help others and if we can help one other person with this cancer then we have done some good.

Off to work, thank you again for reading the blog, I do hope it has helped someone somewhere.

ITV News

I don't know whether its just me or not but I haven't got use to this hour change.  I was up at 7.00, laid awake since 6, then pottered around.  At 8 I was blissfully having a shower when hubby suddenly appears bouncing up and down .... "It's the ITV" he says, so I take the phone and she tell's me I'm in the Northern Echo today and would I do an interview for them on mesothelioma.  Who can resist, you know my policy anything that gets this cancer a mention I'll do  (apart from run naked around woolworths that is).  We make a time then I realise I had better wash my damn hair, so had another shower.  The interviewer arrived at 11.00 and we did the business, as always you think it was terrible, wish I had said this etc but there's nothing you can do once the camera stops. 

I didn't realise that pleura plaque payment had been withdrawn again and as I said to the lady from ITV whether it turns out to be mesothelioma or not it is still affecting someones lungs and reducing the quality of life.  Don't get me wrong I'm not into this claim for everything society, if I fall over I fall over I don't think who can I claim big bucks off, but where asbestos is concerned money should be pouring in.  If I had been lucky to claim most of mine would have gone to research or helping others, but there are some people out there on the bread line who have to find money to get backwards and forwards for treatments, they still need to pay utility bills, mortgages, rents whatever, it costs money to live.  How our old aged pensioners survive on their pittance is terrible, but should they knock out a few kids from a few different fathers well the money just rolls doesn't it.

Sorry I always said I wouldn't get into politics but somethings make your blood boil.  The House of Lords who are looking to remove this compo for plaque would probably never have to worry about putting food on the table or travelling expenses .. sorry they claim them all don't they!

The interview was on ITV Tyne Tees and I thought it was ok, the phone rang instantly "You came across well" from a friend, so along as the point was made that's all that matters.

Once again mesothelioma should be in the papers as a discussion point, also the numbers diagnosed are much higher than expected and especially in the North East, no surprise there then, but interestingly women are higher then men.  Is it because the now know women can get it that they are looking for it?  Let's face it meso was never suppose to appear in anyone's chest (so originally thought) until your late 60's, I know that James Cook know look for meso as a disease to rule out alot earlier than they did 5 years ago so it's no surprise they are diagnosing more as they know what to look for and hopefully the signs of it before it's at the point of no life expectancy.

Going to do some studying, only wanted to let you know about the interview and of course the plaque debate.

Keep fighting all of you .. without us all doing so we could get sweeped back under the carpet and our cause forgotten about.  Money for research, money for treatments and money for those who need it.

Bear and baby sister

Aren't they just adorable!  yes you can tell Bear from his sister, he's the big fat one.  His breeder said he has learnt a new trick, his sibling does all the work getting the milk to the teet then Bear pushes her off and gets the reward.  Only 21 days before we meet him but at least he will know his name properly by then. 

I can't believe these litle darlings will get to be the size of a gentle giant.  There's nothing more pleasurable than lying down next to a big dog and stroking their fur, it's relaxing for you and shows a great amount of affection to the dog.

Have had a few busy days at work, probably the rest of the week too, it always bucks you up when things go right and you actually complete a job instead of leaving something half done because something else lands on your desk that is more important that what you were working on.

The weather has helped as it's mild but I'm missing out on the walks this week as Lexi has been going on a morning and the afternoons for me have been busy.  Tomorrow I'm taking my staff for an afternoon to the local spa, instead of taking them out at Christmas I thought they would prefer something different.  All they have talked about all day is which beauty treatments they fancy.  I'm just boring, I love a foot massage and would gladly sit in a chair for hours while someone rubbed in this and that, then filed my nails etc.  That to me is heaven!

If your weekend was as bad as mine I really hope by Monday you felt ready to climb that mountain again, remember it is normal, even without cancer, to have an off day and everyone has them.

Weekend of Pain

What a rotten weekend, the weather was terrible and I think my body was in tune with it.  Between stomach aches for no reason, Gary has become a dab hand at making water bottles, to be fair the stomach aches have been all week!  Then the strange stomach feelings on a morning, coffee just doesn't taste right even if I postpone having one for a good 15 minutes after surfacing.  Sunday my chest felt tight and all I felt I wanted to do was take a massive breath of oxygen but I know that wasn't the problem.  Then the iron bar across my back and just feeling totally crap.  I had high hopes of feeling better after the operation but it seems as I've recovered from being butchered all the old signs of this bloody cancer are still here, maybe they were still there but underlying as the brain was dealing with so many other pains.  All I know is that there seems no respite for me.

I took a sleeping pill Wednesday night as it was two weeks without decent sleep, and to make up I took another one on Thursday.  Friday I was out of sorts and blamed the tablet .. to much unnatural sleep .. but the out of sorts continued to pain and discomfort.

I was worried yesterday, at one point I thought of going to A&E but seriously what can a hospital do for you when you know what the problem is, I have tried stomach tablets without success, pain-relief does work on the pains but not on the aches and for my chest what ... I nearly went to my mams and took a swig of her oxygen machine, but in my heart of hearts I knew this would do no good either.

I am hoping this is just a one off week but I had sweats last night, the dead rabbit type.  On a high note I have managed to put on weight.  I got out of the shower and noticed for the first time that my boobs don't resemble dried up currents but more like grapes, and my arms have filled back out.  I just need to be careful I don't get a much of a stomach or I will panic.

Have decided to go into work today, at least it will keep my mind occupied and I might even get some work done which makes me feel a little better, recently feel like I'm getting paid for doing nothing and that doesn't rest easy in the mind.

I do hope everyone else had a better time of it than me, I just can't understand why I always am ill and here I am debulked and should be in respite.

Hopefully will publish some photo's of baby bear later on, he raises a smile.  He is certainly taken after his name, his breeder and I both think he's been eating too many pies, he's twice the size of his baby sister.  3 weeks before we can hold him.  I do hope that I am doing the right thing although I know if I should pop my clogs, he may miss me but Gary will certainly be a good dad.

New family member

The puppy was born on the 17th and although traumatic for mam, she had two puppies survive, we have the boy, first male dog I have ever owned.

So here is the picture of him at 2 days old

What an adorable little boy he is ... I just hope Lexi will love him as if he were her own.

I can't wait to hold the little fellow but we will have to wait until he's 4 weeks and mam won't be too upset about him being manhandled by strangers.

I just thought I would share my excitement with you, makes a change to see new life instead of the gloom and doom of this rotten illness.

We went walking again yesterday and instead of getting better with the breathing I'm finding it harder each week!!  So much for expanding the lungs and getting them to work, I expand mine and want to collapse in a heap on the floor!

There is this old crooked tree and I really want to be able to get onto the first branch and sit on it .. kind of my challenge.  Gary tried the one foot in hand routine but I just wasn't able to pull myself up and throw a leg over the branch.  I guess not what one should be doing nearly knocking the door of 50, but I will try again.  If I manage it I will want a photo to prove I did it!

Have just missed out on a sale of a house near us which backs onto the fields, I didn't even know it was for sale .... keep hoping that the sale will fall through, not very spiritual of me I know, but it would be perfect to walk straight out, across a wood and into the fields.  Thinking of Bear when he arrives!  As I'll have to help him in and out of the car.  When he's full grown (upto 12 stone) I'd be lucky to lift his front leg let alone his whole body!!

As you can tell, I have decided to ignore my fears and worries and take hold of life at full speed again.  Obstacles are there for us to overcome and after emailing Debbie and vise versa we have overcome so many between us that we are both up to take on whatever this disease will throw at us.  I'm sure many of you will agree with me on that one.

I heard from one of mam's carers that a friend of a friend has just been diagnosed and he is hiding his head in the sand and talking about Switzerland ... Not the right way to think.  I do hope he will make contact as there is so much more out there than when I was first shell shocked with the news on meso.  So to anyone first coming to terms with this kind of news, have your few days of shock, temper, anger but don't hide from it as it will be harder for your family and friends to draw you back to the here and now and seek treatments which can help you.

Enough of that, in a happy mood, although Gary is under the weather, a cold I think, lucky for me I had the flu jab!  Don't forget yours!

Jan

All nerves again

Here I am Saturday morning looking out on a nice clear beginning of an Autumn  Day and wondering how Bella the mother of our potential puppy is doing.  She hasn't managed to go into labour yet so is on the way to the vets.  My stomach is turning, as she is a beautiful newfoundland and the thought of her having to have a section is terrifying.  I bet her owner is also worried and I'd rather be in my position than hers.

These new pain pads are working extremely well although still feel sickly on a morning, trying the metroclop but still feels crap.

Have decided to put all worries away regarding the pending PET Scan, if something turns out to be a new growth I will have to deal with it then, pointless putting more pressure on my body by worrying about it.  The last week has been filled with worry but as I look out onto the garden, the sun is shining and to be honest I am in borrowed time, I just hoped it would lend itself for at least 5 years before worrying about new growth.  It's only 9 months since the operation and if the scan is right something was building up in July.

I know from past experience that I should be dashing in all trumphets blowing and get something done but radiotherapy could give a distorted picture of any hotspots so patience will be mine this time.  (That's what I'm saying at this moment in time!)  The only thing that makes me worry is the return of the kidney area pain, but that could be pressure from the inflammation, I am just talking myself out of worrying, yes you bet I am.

The problem is I can't fly and so cryo would be out of the question unless Dr A will come to England and use someone else's equipment, but I don't know whether that would be allowed.  There is also the option of cyberknife now in England.  I hope I don't need to do any of this but you see your mind never stops when you hear there could be a problem.

Maybe it's stupid to look for another dog, especially when it's my choice of a Newfoundland and not Gary's of another German Shepherd, but then if it is the dreaded disease, then it could take a couple of years to get as bad as before the operation..... Problem with meso is noone can give answers.  My headaches could be toxins, my sickly stomach (like 07) could be toxins, my kidney pain, don't want to think about it!

I hope where ever you are today, you have this beautiful sunny crisp fresh day and make the most of your weekend. 

Hopefully by tonight we'll hear how the dog is doing and whether we have a new puppy to look forward to.

Out of the Blue

What a wonderful surprise I had the other evening, Dr Owens left a message for me to give him a ring and have a catch up.  It's 5 years since he first met me and removed that curtain from my lung.  It will be great to catch up and see how he is doing.  I know he moved more into research and hearts than lung so I'm sure I'll have an interesting hour.

Good news too, I have a chest physician and he is at our local hospital, plus he has dealt with mesothelioma previously, so things are looking up.

We have had to source a new puppy and spent Saturday driving up to Scotland but met the new family.  Daddy bear,mammy bear and auntie bears!  Hopefuly mammy bear will give birth this week and in 4 weeks we will get to see the little bears. 

Having been travelling on Saturday, Sunday was a total wash out, I ached and I was tired.  We were due to go out for lunch but I had to call it off as I felt terrible, although well worth it.

I have also got some new painkillers from my chest man, they stick on like plasters and are really working well especially on the kidney back area where pain has started to become a drag.  (My warning area in the past of something wrong). 

I heard that a friend went for chemo and had to be cancelled as the B12 and folic acid tablets hadn't been put in place.  Can you imagine how that person felt.  Keyed up for chemo then postponed .. I'd be relieved to miss the needles but more on edge because of the delay.  Why the NHS still can't get things right is beyond me.  Too many Chiefs and not enough indians or too many indians and no chiefs, either way it is unacceptable. 

Jan

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!