Sunday, 29 May 2011

Catching Up with Meso Circle

We had a lovely lunch yesterday spent with Helen and Barry followed by Helen been mauled by a 10st Black bear.
I think Helen fell head over heels with the Black Boy and for a person not too keen on dogs certainly enjoyed the loves he was giving her.

It was great to catch up again so soon after LA, but I must admit I was a little envious as they had come from seeing Take That at Sunderland on Friday night.

Although it is terrible that we met through having mesothelioma and would never had met, the only good thing about meso is that you meet some wonderful people, unfortunately they are on the same journey as yourself.

I had hoped that we would have had a family walk over the woods today, our niece has arrived to stay for a few days and hubby finally tracked down a large ramp that enables Bear to walk straight into the Jeep at a lower ratio and much more rigid so it doesn't buckle under his weight.  The weather though has turned to wild winds, so no walking out for me.

I decided to try and sync my blackberry with the computer and managed to loose photos!  I think I need a few lessons in technology.  How do kids of 11 manage to get new things and know exactly what to do with them?

Here is a very nervous me before going down for cryo in March.  See all hospital gowns are the same the world over!

I think the shake on the camera was the fact that hubby was more nervous than I was. 

The man of the moment, of course Dr Abtin.  This is on the main drag to Santa Monica.  We were sat at the corner of 15th.  Must admit the sandwich we had for lunch there was the best food we had eaten the entire time we spent in LA.  This was the Friday after the procedure and hubby and I walked the 16 blocks down to the coast.  It doesn't sound much does it 16 blocks but it was a good 40 minutes both ways.  Thankfully it was flat!  I don't think I should have done so much but Dr Abtin didn't seem that surprised at it.

I have to say that I wish I was feeling lots better, and after talking with Helen it is a relief to know that she also has some of the same uncomfortable areas.  Especially the feeling of having a constant stitch in your side. 

My GP rang on Friday evening to see about sorting my next scan out and to check up on how I am doing with the Gabapentine.  Thankfully he is quite happy with me only taking 2 a day.  Guess I should go and have a chin wag but will leave that till after the scan.

I hope the meso meeting went well in USA, Dr Abtin was presenting after Dr Waller, hopefully they may pick up on the thoughts of cryoablation over here. Especially if they can see it helps, yet we do have thermal so why isn't that getting publicized. 

I have also asked my GP to ask for a definition of the thickening, is this what Dr Abtin identified as the 15 pin heads, also to check on the 3 nodules on the right lung.

Am ending here as I have just heard some terrible news about a fellow meso friend.  Why are we told that this bloody cancer  hardly ever does spreads from the lung......

If you are a believer in something called healing or Rikki please send your energies to Alan, it will know where to go.  Our hopes are your hopes.


Wednesday, 25 May 2011

Debbie's Fund

Although I don't mean to be so out of touch it was a shock to read that Debbie was back heading to Germany for another round of treatment.  What is even more worrying is the Gall Bladder. 

When the tumours were back in 07 I  was told it was probably the Gall Bladder and yes I did have some stones but when I awoke from the surgery I was having the same pains (a full out heart session).  I just hope and pray that it is gall stones for Debbie and not the meso in the heart sac.  Let's face it I had had scans and they couldn't detect it or they didn't see it (it isn't an easy area to read).

On a good note I am pleased that she has raised enough money for the treatment and hopefully the fund will continue to grow to help towards others who run a little short.  No one knows what treatment does actually work but having hope is a key factor to keeping going. 

I would ask anyone though, who is going to Germany for treatment to ask their oncologist here to give them a kidney check to ensure they can cope with the toxicity of chemo.  We take everything for granted that who we see will do what is necessary but it isn't always the case.

Looking forward to Saturday and Helen and Barry are calling in on their way home after Take That at Sunderland.  Will be lovely to catch up again and also pick their memories about what Claire Cameron had to say about the Journey of Life. 

I haven't heard back from Andy Hughes yet regarding all the research I gave him but I guess there is no hurry as yet.  At least if I think that maybe my friend won't want to grow.

The clock is ticking so had better get a move on and go to work.

Sunday, 22 May 2011

Mesothelioma and life

I heard today that another brave person has lost her life to this cancer.  When you think you are safe and have recovered from treatment it seems to come and bite you in the arse.  It seems the routine is treatment, recovery, treatment, recovery.  Some people are lucky and aren't affected by it for years yet others it just doesn't want to give up.

 I have tried my hardest not to think about my friend this week, I thought I had actually put a few lbs on as well only to be so disappointed when hubby brought the scales into the bathroom this morning and I stood on them.  Instead I have lost another 2 lbs.  I was sure I had hit the 9 stone mark or is it because I have finally bought some jeans that actually fit!

All in all I do feel better, I have tried to ignore the morning body blues and pushed myself into spuring myself on.  It seems that if you don't think about the cancer someone else always brings it up.  How can we escape from the knowledge that we have it when others keep asking you.  Iknow I said I felt like hiding my head in the sand and I still feel like that.  I don't need to arrange my scan till June and then I guess I have the soul searching to do.  I can only hope and pray that those pin heads are stable and the new nodes in the right lung aren't dangerous. 

Dr Abtin not only has a fan with me but also with Linda who has just lost her sister.  Wish we could get him here and do the business.  Much like Debbie wishes she could get Prof Vogl to do his work here.  Strange but after everything I have been through I don't think I could have someone feed a tube up my main vein from the groin to my lung.  I also heard from Cher, she is flying out from Oz to Germany again, staying 6 days to get one treatment.  The guts that lady has flying that distance for treatment is outstanding, I think for miles travelled Cher must win hands down.  All we can do is hope and pray that it works and keeps on working for her.

Debbie is also having to revisit the route of Prof Vogl and I would ask you to visit her blog - support is an amazing thing.

I have finally downloaded my camera and here is a picture of Helen and I having lunch in LA, Helen looks so well I am so jealous.

Looking forward to seeing them in May when they come to Sunderland for Take That.

Time to log off, dinner is out and yorkshires are getting cold.


Sunday, 15 May 2011

Glitter Ball

Having taken weeks to get the new tablets in my system (still only on 2 a day ... just can't seem to pluck up the courage for the 3rd one) I know that the pain relief seems to outweigh the side effects but could it also be that I am recovering normally?

I don't feel myself, could bite someones head off for no reason so am constantly on my guard not to get slightly miffed with anyone... thing is I'm finding you don't need to be miffed to feel like biting anyone's head off!  Paradox in itself that sentence, so I daren't take no 3, my God I could become a time bomb!

So what's happened over the last few weeks, have been full on  at work, that's once I've taken an hour and a half on a morning to feel like going, then its in the deep end, but concentration is failing badly ..could be the tablets.... normally I would have between 3 and 4 jobs going at once on my desk and computer I seem to find it hard to deal with one, but shouldn't complain as I still work and it nearly meets what normality is!

For the first time in months I had two events on for one day  (yesterday), one the Point to Point for South Durham (sponsor table etc) then Mick Knighton's Mesothelioma Glitter Ball.  I didn't dare sit still from coming in from the Point to Point to getting picked up at 7 by Lorraine for the Ball.  The Assemble Rooms at Newcastle were done out with such glamour and the place was heaving.  I think now there are more sponsors and guests than ever before and probably less of us cancer lot, but that's what brings the money in and helps the charity raise funds.

Chris announced that the charity has reached £1,015,000 since starting in back in 02, that for 2 women and the amount of awareness that has come to the forefront is amazing.  Chris has probably done more for mesothelioma than any other person or organisation.  The good thing with the MKMRF is the money all goes to research, no fancy offices or cars, no high expense bills - all to the cause.  Hats off to Chris and Ann for achieving the goals they aimed to fulfill.

Went to see Andy Hughes (Oncologist) Monday, will be doing nothing until my scan in June.  Decisions will then have to be made.  He actually was on about trials and I left him all the material I have recently gathered for him to read through.  He said he would facilitate any introductions I may need should I go that way.  I said I really needed someone to bounce ideas around with.  The problem is am I 3rd line or 1st line where treatment is concerned. One thing that we both agreed on was that I could never take Alimta again, it was the choice of do you die from the Alimta or Meso and in my case it would be the Alimta!  Have also been back in touch with Dr Gilliams at the London Clinic and should I need to I can still have thermal ablation on any singular tumours that are under 3cm but over .5.  So if one of my 15 pin heads decides to grow individually then bye bye with ablation.   At least its in England, no 11 plus hour flights and hotels far away, its one night in hospital as its under a general. 

The headaches seemed to have cleared again since the cryo - so hopefully the cancer has retaliated for a while, although my kidney area has bad patches of pain that last for 2 hours at a time.  Have also been having sharp hot stabbing pains in my shoulder blade, especially near my scar and left breast ... hope its nothing but you never know.  One really good thing I can't feel that pea in my back anymore when I lie flat and my breast is still not causing any pain when it touches my rib .. long my that pain stay gone for good.

Met up with Chris Scott at the Ball, I was diagnosed a week before him.  He was looking the best I have seen him in years.  Since 2004 he has had 2 lots of chemo cycles, suffers no pain at all, same as Colin no pain.  I am still wondering what extent of meso they had on diagnosis.  When I think back to the 2 curtains hanging off my pleura and the 20 plus smaller bits Andy Owens removed I guess I am lucky to still be here.  It seems a lot more people are being diagnosed a lot earlier (a fine thickening and maybe a nodule or two sticking out). 

My Oncologist said I seem to have done treatments in the totally wrong order.  Maybe I should have had chemo straight after surgery again - but would it have mattered?  That's back to the problem with mesothelioma - it doesn't do the same in anyone person and no one can tell you which way you should go.  Yes we have the standard on diagnosis - either surgery or chemo.  Most go for chemo then its wait and see, what else is there we can do.  Surgery is a large undertaking if you have only a fine thickening, but then it hasn't got to grips with the lung so to speak so maybe surgery should come first then chemo second.  In a way that is probably how mine went as Andy Owens just about stripped my pleura the first operation in 2004.

After having such a busy day yesterday I have spent all day lazing around watching tv.  I haven't had much energy and any energy has been zapped  trying to brush our Bear.  I feel like I have wasted a day off, but then what are days off for but to sit around and do nothing.

I have missed a few weeks but my moods swings have become apparent even to me and its best not to write when feeling irritable. Sometimes this cancer leaves you feeling its you against the medical profession and they don't listen, or its you against family and friends and they keep pushing and pushing with ways to cure you, or some times you just feel like putting your head in the sand and ignoring the whole business.  Work has kept me occupied and more so these last few weeks because I really want to crawl into a hole and forget mesothelioma.  The wish to wake up without hurting or feeling yak is so deep now that I hate going to bed because I know in the morning its bad, but then the morning has gone and your occupied with other things.  Frustration at not being able to do stuff bugs me as well.  Why should going out be so tiring, why can't I be bothered to do anything when I finish work.  Come to 4pm and I want to close my eyes, but I won't let myself do it.  For no reason at all one morning last week I felt like going into my tablet cupboard and throwing them all in the bin - I know that's the Gaberpentin causing those irrational thoughts - but that's how I felt.

Sunday Roast is in so guess I had better get myself in the kitchen, poor hubby has been the sole chef for the last 6 months, I just can't be chewed with it!  I have also managed to hold my weight at 8st 10, so I finally went out and bought some new jeans - 4 pairs to be exact - watch  me start piling the weight on so they don't fit!  That was last Saturday and I was worn out last Sunday too!

Enjoy your dinners and no doubt I will write a load of dribble next week