Sunday, 24 July 2011

Another year down

It does feel good to still be here, especially at the tender age of 44 I didn't think I would see 45 let alone 46, now I've hit 51 and hopefully I will still be here planning my 55th, neigh 60th!.  To be honest I didn't even realise it was my birthday approaching like a rapid rate of knots until Wednesday and Shirley at Healing gave me a birthday card.  I am so absorbed in the housing that dates  just don't exist.

One thing I have certainly learnt for my 52nd year is that I am either wanting to battle or wanting to hide away from meso.  I spent the majority of my life working and fitting nothing else in, now that I should be fitting other stuff instead of work I just haven't the energy, or as I wrote to my meso mate, is it because it just isn't in my personality anyway. 

Today was wonderful, we actually got back over the fields, the grass has been chopped down so no fear of it annoying Bear's neck or Lexi's bum.  The dogs truly enjoyed the freedom of a few acres instead of the third they have to make do with at home.  Bear's nostral's never stopped, they seem to go into overdrive when he has a scent of something.  I had hoped we would have had some good sunbathing weather but then you can't have everything!

The other thing I have noticed is that everyone around me brings up meso more than I do, or appointments or the 'what treatment are you going to do next' question.  Cancer is a scarey word but everyday someone out there wants to remind you of it.  Then why do I write a blog about it then .. I started because I wanted to tell others about cryo, then somehow it became a journal of how I felt.  Good job I wasn't writing my blog when on chemo like Amanda is on theirs.  I remember Lorraine asking me to start my story and I found part of it, if I had been doing the blog I think I would have turned everyone off the thought of ever trying alimta. It was that bad even I didn't read past the first two paragraphs,  I am pleased I didn't use it on the website story either.

Funny I am already starting to wonder if our summer next year will be better, always the optimist, but its true.  Mal at work said something about 12 weeks time will be November and I thought where does the time go and what have I done with it.  Nothing is the answer, we are all guilty of the same so what is life about.  We get up, shower, dress, go to work\shop\visit, we cook, eat, watch TV then go to bed to do the exact same thing the next day, we call this living and hold onto it with all our might. 

I feel silly worrying about a couple of mm growing, but then I have been through so much to have a few mm growing back that I think I'm annoyed it dare come back.  All that chemo, cryo and surgery.  I know there are no guarantees but seriously I didn't think it would come back after surgery.  I had heard about it, hence why I didn't eventure there earlier, but maybe I could have waited a little longer.  Would I really have been pushing up daisies if I hadn't had it done when I did?  Would it be better to have surgery earlier before the meso really does make itself at home.  

What are our choices for treatments really, not a lot, 2 chemo's, surgery, ablation - but only on large tumours to relieve pain (and hopefully slow spreading down), Prof Vogl's chemo direct to the lung, or nothing.  If you don't agree with chemo will Prof V's work?  Not enough stats on any of the above.  See I'm back to thinking about treatments, why can't I just concentrate on the enjoyment of life and quality of time!  Spending my free time worrying over what to do is such a waste but I can't seem to get my brain into that way of thinking.  A good surgeon keeps telling me quality is much more important than quantity ... but what is quality .. going to work\shopping\visiting friends?

I remember the first year and we travelled, I seemed to have more enthusiasm to do things and spend time with people, now I just want to grow old with hubby and dogs, die in contemptment in old age from a heart attack not be robbed by meso.  Up until your 40's you don't really think of old age, your parents are starting to get there but in your eyes they are still the same.  When you loose them you suddenly seem to realise old age - the downfalls of getting old and even worse noticing you are getting there yourself.  Time to close otherwise you will be requesting your zimmer frame before you reach the end of this.

Keep enjoying life and everything that makes you happy - or at least try! 

Wednesday, 20 July 2011

Meso run for your life

The results are in for the last scan.  Although I don't understand the full amount of the medical wording I know that having the 4 removed in March was a good idea. 

It didn't kill the cancer, but those 4 tumours would have flowered, for want of a better word, and more little tumours would be feeding off my lung.  Some have remained stable but others have grown.  One remark was the 9mm tumour previously recorded in January is no longer there.  I hope this was the 14mm tumour which was removed, but on the side this would mean that that specific meso was growing at approx 5mm during those 3 months.  The radiologist has reported that some have grown in bulk and some between 2 and 3mm.  It is hard to work out the sizes, after all it depends on where the scanner slices for its pictures.  As for my right lung I have the 3 tumours reported in USA and 2 tumours reported on this scan.  Either way the meso is now in the right, whether 2 or 3 doesn't matter action needs to be taken in that area.

I am waiting for a copy of the scan and then I guess I will be contacting Prof Gilliams and try thermal ablation.  I would love to have Dr Abtin remove them but there is no way I am returning to LA.  I like the idea of just going to London, one night recovery and home with the dogs and my own surroundings the next day.  At least that will take care of holding them back from flowering - fingers crossed.

I just don't know what to do yet about the development of the meso in my left lung.  If it stays slow growing then I'm 50/50 on holding off any chemo.  I need to remember that when the chemo came back to life in 07 I wasn't that happy it was over 1cm before I knew and I was annoyed that I hadn't started chemo earlier, but as it was the chemo didn't work and the cancer kept going. 

I feel really good at the moment, forgetting the morning crap, but I have gained weight, my energy levels have improved and although I am still battling with the gabapentin, overall I look well and feel well.  I think I am telling myself that the meso isn't there and maybe I am putting my head in the sand in some ways but when you feel good you don't want to know that things aren't.

I am still waiting for my oncologist to come back with his thoughts on the trial info I have given him, I guess when I see him again my head will have to come out of the sand and I will have to deal with the reality my friend isn't willing to give up the fight in my left lung and has made a claim on my right.

That's it for now, hubby is calling from the kitchen, dinner is ready and my stomach is empty. 

Keep strong everyone and let us beat this thing.

Saturday, 16 July 2011

Emotional journey

It has been months since my mam died and today was the first time I have actually started sorting out her things.  It only took me 5 years to go and put Dad's things out of drawers and throw out his old socks.  Mam couldn't do it or wouldn't, I don't think she ever entered his bedroom after he died.  

Hubby, because it was pouring down, went down to the house and just filled boxes up with everything from the cupboards.  Cards, photo's, brushes, batteries, you name it, it was all there.  I have only visited the house 3 or 4 times because it feels strange, so I don't know how I will cope when I finally go into her bedroom and start sorting through her clothes etc.  To think after living for 84 years her memorabilia filled 8 storage boxes.  I thought there would be letters which she kept from her mam and aunt, but nothing.  Birthday cards, xmas etc but no correspondence.  It brings back the wonder of why we are here, once we die we truly do and in another generation mam will be forgotten.

My scan results are sitting on the computer at the surgery but unfortunately no Doctor has read them, hopefully I will get some news on Monday.  I also kept the appointment with the pain management Doc at the local hospice.  I don't make sense when talking about pain, I have different pains at different times, my morning pains are the worst and I hate waking up.  Yet at the same time I need to feel a little of the pain to know what is happening.  He wants me to take the gabapentin 3 times a day, so from today I will be on 3.  I have warned hubby to buy a set of armour and to hide the knives.  Also have a new appointment with the gastro people in August so maybe if I can solve the stomach issues I will feel better overall.

Having a girls night tonight, Chris has ava for the night so Lorraine and I are going down, haven't done this for months so it should be fun the three of us.  Although it will be a teetotal event, Chris can't drink because she has the baby, I can't face it and Lorraine is driving.  I don't know whats worse getting up and down all night for the loo because I had too much alcohol or too much tea!

Time to go, Lorraine will be here before I drink my tea and brush my teeth!

Thursday, 7 July 2011

When do they learn

Everyday on TV, Radio or newspaper there is coverage on bowel cancer, if you notice changes etc etc go straight to your Doctors.  One of my manager's wife has been doing that for months, to the point recently that she spent most of her day in the toilet.  I don't know why but the Doctor just refused to refer her to see someone else.  At first he said it was something to do with the  tablets she had taken to go to the loo, then she was suffering stress, all the usual rather than just sending some one off for a proper investigation.

Finally, after requesting to see a specialist privately, she was referred she saw the consultant a week gone Monday and Tuesday she was in having very test possible, by Tuesday evening they were forewarned things were not good.  Today, after going through a small operation on Monday the news is far from good.  Their lives have just fallen apart, they are no longer just dealing with bowel cancer but it has already spread to the lungs and the lymph nodes.  She did everything right but has been badly let down by her GP.  The same thing happened to my late Aunt, for 2 years she kept going to the Doctor and all that time her cancer was spreading to the point that by the time diagnosis was made she didn't have that much time left.

Everyone makes mistakes, errors happen in every aspect of people's jobs, but when you have a patient knocking at your door more than 3 times for the same reason surely something should be looked at.  Even giving peace of mind by doing further investigations must save the NHS millions, and that would just be on the amount of pills they dole out.

I received news of my scan date, to my horror it is the day of Alan's funeral.  Changing it means another long wait and I just daren't.  Its now 7 months since confirmation of the cancer growing and as much as it breaks my heart not to be at the funeral it would break my families heart if I put off another 6 weeks for a scan which adds on another 2 weeks for the results and then we are in October before I get anything sorted out.

On a good note, Lexi is 10 today, hubby baked her a special cake, made with chicken fillets, oatmeal and carrot all mixed with flour and eggs (sounds delightful .. not).  He then put Dog chews on the top for candles... bless.  It was so funny this morning as I was pulling out for work the florist arrived with a vase of flowers, I thought he had gone mad and bought her a bouquet for her birthday, it turned out they were for me as a thank you for his new 500 lens he wanted.

All for now, thoughts to Heather and family for Tuesday

Friday, 1 July 2011

Loss of a friend

It's with the deepest sorrow that I am letting you know that Alan lost his battle to mesothelioma.  I know that many of you sent your thoughts to both Alan and Heather.

Alan and Heather attended meetings across the country, raising excellent points on treatments and driving awareness of mesothelioma.  With that awareness they also brought warmth to everyone they met and I hope that Heather knows there are lots of us out here that will be there for her.

To Alan, I salute you for your courage and humour that carried you through this journey.