Update on health

Thank God for GP's who you get on with.  I have managed to ascertain that I have pulmonary hypertension on the right side of my heart, brought about by lung problems .. at least I know I'm not going to drop dead from a heart attack in the near future.

I did complain about the lack of communication I had from the chest specialist so my Doc is going to speak to the top man and see if things can be sorted out more easily in future.  I did ask to see another specialist but have promised my GP I will hold off until after my next hospital appointment (August), some 4 weeks after my next scheduled CT Scan.  I haven't heard what will happen about my heart apart from an echo graph again in August, so presume nothing but watching and waiting is the call of the day or nothing can be done.  My temp is still floating around 35.5 but I must admit I am feeling 100% better than I did this time last week.

I have also started taking paracetamol morning and night along with my mst and have noticed a remarkable change in my rib pain, for the better I must add.  I am only taking one tablet so am thinking of taking it up to two morning and night.  Just getting up without that concrete\iron corset on makes such a difference.

I have heard that a friend who went to see Prof V with small cell lung cancer isn't doing too well at the moment.  Although his treatment prolonged her life she has suffered with some damage to her windpipe but I'm not sure how, hopefully I will have some further news after Meso day as her brother will be there.

I have been reflecting on the problems I have had since our holiday and I do think that I have caused the air leak by flying, probably pulling the lung from the chest wall a little.  It does make sense, the low temperature was always an indication that my pleurisy was starting, so maybe I have some fluid there too.  Hopefully my GP will clear this up with Dr Abbassi in his letter.  I left him Dr Abtin's email to digest about my condition and he along with myself, was pleased that the cancer hot spots are dormant at the moment and long may they stay that way.

Surgery might have been tough on my body but it was worth doing it, to still be here alive and able to walk the dogs out in the fields, go to work, visit friends etc I have again started to take these things for granted and plan on doing this for at least another 10 years.

I said to Lorraine the other day that my body had been through hell long before I had surgery, I had had endo for years which causes your body to fight against itself, then to have meso.  Anyone who has been healthy until this cancer comes to life probably flies through surgery and suffers much less on the other side.  I had had an awful lot of surgery, even when I had cancer, so I am sure this makes the body weaker.  So please if you are considering surgery don't be put off by my moans about pain, you could be one that flies through and is back to normal without pain in 3 months .. a walk in the park ...

On that note I am going to crash on the sofa and watch something other than football!

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.

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.

Still carrying on

I feel kind of guilty for not posting recently but at the same time I have no idea whether this helps others in this situation. I think I am on 15 weeks since the operation and I am doing really well. I have just spent a couple of days away with my friends, hubby had to stay home with the girls, and I had the best time I've had for ages. As I relaxed knowing that hubby would be relaxed at home.

If I move suddenly hubby is on the alert, where if I did that with the girls they didn't notice so no one was getting worried!

The funeral was a wonderful tribute to Linda, only problem for me was when we got to the pub we were talking in the car park and an old friend came over and whacked me on my back, yes you've guest it, left side, not just once but twice! That was me over and done with so I didn't get to say anything to her husband or sons.

Yes I still have odd and sometimes frightening pains, I had a couple around the heart area, just sharp shooting pains, but I think that's the gauze settling down. Plus I get shooting pains in my lower stomach, so I am sure it's the same thing. Although I am still numb with peculiar pain areas I am really doing well. People who see me can't believe I look so well. Still in doubt about going through with it, whats 3 months if you can buy 3 years, its shorter than chemo and gives you more time, hopefully.

I went for my bone scan yesterday, once again injected with radioactive things. Its a wonder I don't glow in the night! Hopefully the results will be with John by next Friday, yes I'm off to Sheffield to see my surgeon, so he can feel my patch under the boob, I think he was sick of having to move my bits out of the way when he was checking before, I've given up being that embarrassed, just hope all is well. Even better my blood is finally on the way up, I could have celebrated, but my luck would have been the Alcohol thinned the blood and I was back to where I started.

The paper petition for the National Centre is doing well, I have collected in 340 signatures at the moment and have several sheets still outstanding. Will be doing the rounds next week to pick them up. I even took it to Pine Lake, where we were staying, and pounced on people to sign it!

I think that's enough for now, my head feels less crammed and I'm sure your bored by now. Take care everyone and remember axe the china man.