Debbie's Home

Hi Everyone

Heard from Debbie yesterday and I am pleased to say that she is home.  For a wonderful change it wasn't anything to do with Theo.

It's good news to know that she is ok and on the road to recovery.

Don't forget it is the Mick Knighton Mesothelioma Ball in May up in Newcastle so don't forget to get your tickets organised. 

So am off to pack and board that long awaited flight to the sun.  I wish you all well over the coming week and if I could bring the sunshine back for the UK I would.

Jan

Debbie

Have heard that one of our battlers and chaser downs of new treatment is under the weather at the moment.  I hope that Debbie Brewer will start to feel better soon and get herself out of hospital and home as soon as possible.

I am sure that many of you have followed Debbie through her battle with Theo and her work with Prof V getting chemo-embolisation used in the UK and I am sure you will join me in wishing her a speedy recovery.

Jan

Good News

It was great to receive an email the other day from B, his lovely wife has been battling meso for some 30 plus months, having had surgery at first but only getting 97% of the cancer removed, went off to Germany and is still stable.  It's always good to hear and lifts everyone's spirit's when we hear this type of news.

No one can say which way is the best to go with meso, it depends on so many factors - where the main tumours are, what spread and which area.  When I was diagnosed the meso obviously had a good hold for the spread was around my chest wall together with the set of curtains hanging from the lung but I was always more bottom left. 

Colin has recently been to see his specialist and for reasons unknown at the moment they are holding back any further chemo.  He's had 4 and is stable, although no shrinkage, When asked for my opinion I couldn't answer, maybe Stable means it hasn't grown and hopefully won't grow or no shrinkage means that chemo hasn't done anything.  This is the annoying thing about meso, it baffles us and, if most doc's are honest, it baffles them too.

I have beaten the odds so many times and hope that I continue to do so, is that because I look after myself .. no I am a terrible eater, my diet is beyond a joke, I don't rest enough and I expect my poor body to keep up with me - I know I am not doing myself any favours yet I am still here, I know that many people with meso take care to eat certain foods, take vits and drink healthy tea's etc and they do well too so is it our diet that predicts how well we do or is it something totally different.  After all I have lost meso friends who ate well and only took things easy.  Life is for living and even with a death sentence hanging over our heads we can't ultimately change the person we became before this disease.  Mind I use to love to have a few B & C's and the odd champagne but I find alcohol doesn't agree with me anymore, but have a love of sweets - not chocolate - pure sugar chewy sweets! - which I didn't have beforehand. 

Mainly I just wanted to say Well Done H you have wounded this killer and I sincerely hope this remission lasts a long long time, infact it lasts that long that the word meso becomes a far and distant memory.

For me I'm off to see the stomach man tonight, I doubt anything will change and I know I won't want to take tablets again, my kidney is back to normal pain rather than getting me down pain, so I guess I will just have to get on with it and deal with this funny tummy on a morning for a long long time.

Don't surrender and if you haven't heard from any of your meso circle recently drop them a line, I know we worry in case something bad has happened but then maybe your email might just make someone smile.

Jan

Results

Firstly thank you for the support and well wishes I have received.

I am happy and relieved that the report was static.  Although we waited again for some 2 1/2 hours to see the Chest Doctor it was worth it.  He did comment once again that locum's had written the report but he had spoken to the top Radiologist and asked him to have a look.  Dr Orr had pointed out some suspicious area's but no one mentioned the funny nodule or any of the lymph nodes.  I think Dr Dae was quietly content too, he is a nice young man but I am his first patient to have undergone such drastic surgery, together with so much previous meso treatments, that he finds the case interesting to say the least.  He did ask me where I would go from here and also commented on that if there was a growth then why not give cryo another go. 

I am now waiting for the copies so I can do the usual distribution, one to Dr Edwards, One to Dr Owens and of course one shipped off the USA. 

The pain is still a big issue so after holidays am going to try another nerve blocker .. Hubby has told me he will hide the knives as when I last tried them in 2005 I had a personality change.  Yet I was on duloxtine for all those months for nerve pain after the operation and they didn't seem to do that much for the pain in later months and what a time I had coming off them.

The main thing is that the main picture is I am stable,  stable and static,  I could have kissed the ground, I thanked God about 50 million times and then felt sad for my friends who have recently had bad news.  I know they are pleased for me but it still hurts when co-sufferers haven't received the same good news.

Without any qualms either the scan was booked there and then for July, God just before my 50th, it brought back words of days past when I was told I won't make that age. 

My meso circle and I have all agreed that the longer we wait for a Doctor, (not just because the NHS insist on giving Docs only 10 minutes in some hospitals to 30 in others) is because that Doc takes an interest in each patients case and is prepared to do his job correctly.  We should canvass the PCT's and say all patients should have a minimum of 30 minutes and new cases 1 hour, I know John Edwards and Andy Owens agree with that one.  How can a Doc review your case, speak to you and remember what your case is about then listen to what you have to say, decide on a course of action and kick you out in 10 minutes .. if they do they are either not interested or have photographic memories.

All I can tell you is that the champagne tasted exceptionally good on Friday night and we are both looking forward to this holiday with even more excitement than when booked.  I have always used holidays as a haven away from cancer, no talk about it, no worrying over it, that was until our last couple when I was really ill on them, but overall they are a place to get away from our everyday life and worries.  This one will be even better, the first one where the cancer has been debulked and where I am static (it's been that long since I heard that word and believed it) .

I just hope that everyone who takes the time to look at the August scan against this scan can agree that my insides look great.  My right lung has expanded further to help provide the oxygen as my left lung is still quite small, but my bloods are fantastic, my oxy level was 99% and the sun is shining.

I have also had a thought on the pain, after all I was back at my desk within 10 weeks of surgery and the majority of my heavy files were on the left side (op side) which I kept lifting up.  I have probably caused the reaction myself as using that side constantly got the muscles and nerves reacting a lot faster than someone who took time to get better by doing walks and gentle exercises.  I was back in work pretty much the same after my first operation in 04, I never learn but then work has always been my release.  I say this because my friend has just had a new hip and 10 weeks down the line she is still taking it easy and will probably be off for another couple of weeks before gradually going back into work.  I just threw myself back in it, yes people say if you want anything just ask but you can't keep shouting 'Can you come and get this file out of the drawer' or 'Put this file in a cupboard', you lift the file up think and react to the pain then forget it until you do it again.  I have never been a good patient, whether this makes the recovery overall better or worse I can't say, I do know that a fellow meso friend had surgery and is still numb down his side, yet another has terrible pain but doesn't take morphine for it.  We are all different, and women well we have all sorts of hormones racing around too which never helps.

Onward to battle another day, it isn't long till action day and lets hope this year some where a new drug is released to help combat the meso, a new treatment has proved its worth and our NHS will use it.

To those politicians out there (not that they would read this blog but airing my thoughts anyway) we all deserve the chance to extend our lives with new treatments and drugs, whether it buys us a month or 10 years, we have that option and that right.  Not all cancers are cure-able but why should we roll over and wait for death there are many out there with meso who had Alimta and are still going strong 5 years later .. think on MP's it could happen to you.

Never surrender ..

PreScan Nerves

You know that I am a great believer in CT Scans done regularly, (they do them 3 monthly in USA and Australia as standard) but it still doesn't stop you getting the pre result nerves.  When I first had Chemo back in 04/05 I use to have xrays and a follow up meeting every 3 months and for the week before hubby would get the jitters whereas they never bothered me as much.  With the scans you know the results are much more clearer and depending on who reports it can give a good understanding of what is going on, and I must admit I now get the jitters.

Over the last couple of weeks some of the meso circle have had bad news and it hurts to hear that things aren't going well.  We aren't dealing with a pleasant cancer, it is aggressive and takes no refugees, any pains we get we panic over (understandably) and sometimes that scan can give you peace of mind where odd pains are concerned but of course it can also tell you in black and white bad news.

I am hoping for the best but I fear the worst but maybe I am becoming paranoid over it all.  I have to admit that these last few days my kidney pain has settled down so I think I will certainly be giving pilates a miss for quite some time.  Last night my ribs ached and during the night I tentatively pressed down each rib and space between, (I was checking for seeding too)  I have decided that the muscles and nerves are causing the pain and because my ribs are nearly touching each other in places this is doubling up the problem.  I did have a gentle push around my kidney area but that was still too sensitive but has improved from when I went into clinic and I couldn't bear the doc touching me.

I also went to the dentist today to be told the 2 fillings I cracked (must stop eating sweets) would require the teeth being crowned and due to my terrible diet and the use of chemo my teeth are quite week too, so probably more fillings will be required over the next few months.  I remember when I was told that my average would be 6 months to a year, my thoughts of the positive were I wouldn't have to visit the dentist!  I hate the whole thing and my teeth have always been sensitive even just getting a polish makes my teeth scream.

I can only hope for the best tomorrow but then the scan will be sent out to others to compare as well .. I will either be smiling or crying this time tomorrow night, but as always I will not surrender.

Bob Tolley

I have been sitting on this website for a couple of weeks and apologise as I should have had this link up earlier.  I have also put it down the side and when the website is adjusted again I will add it.  It is another story of a fight and the family have carried on doing work to promote mesothelioma.

http://www.bobtolleyfund.co.uk/Home.htm

I think mesothelioma must be the only cancer out there where we all have to source the majority of our own information and thankfully quite a lot of people carry on the work even when their loved ones have succumbed to this terrible disease.

I know have I haven't written anything over the last week but thought it wise not to as I was in a off mood and to be honest I would not want to read about my thoughts let alone publish them, enough to say that after 10 days of been towards the depressing side of thoughts I have lifted myself out of them and the sun is once again shining.

Sometimes you get fed up with being the strong one, your family rely on you coping with this cancer so they can cope and any weakness on your part upsets them and they can't deal with it.... that's my prospective anyway, and last week I was sick of being strong and positive, I just wanted someone to take all my worries and cares away and be strong for me.  As I say I'm pleased I stayed away from the blog as this has become my personal journal through this battle but even some thoughts should never be written.

Anyway have a look at this site and enjoy the heatwave of this weekend, it could be the warmest weekend for another month.