Sunday, 26 April 2009

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.

Thursday, 16 April 2009

In Memory of Linda

On Easter Monday a friend of mine lost her battle against cancer, she has done nothing but fight this disease for 4 years.

Linda was one of those people that always had a smile, laughed a lot and lifted a dull atmosphere into a lighter and brighter one. I rang her two weeks before she died, the oncologist had told her that there was nothing more to be done, the tumour was now inside her liver and into her bones.

I sent her information from the Mayo clinic as they treat advanced breast cancer, although her breast was clear it was in other parts of her body. It is amazing that pathologists can breakdown the cells and know what type it is.

We laughed and joked on the telephone about fighting this disease, how they had had a fantastic holiday in South Africa on a cruise, she had only been home a couple of days when she started having problems and I thought it was a gall stone stuck in the duct (telephone call previously).

When I went to America Linda rang me everyday last August to make sure I was okay, I haven't physically seen Linda since June 2007, so you can imagine how bad I feel. I had kept promising we would go up and visit as she was constantly on chemo until before this Christmas. Its great having phone calls and keeping in touch but it isn't the same as being face to face.

I am sure the family are grateful that it was only the last week of her life that the pain was unbearable. Her husband was unable to touch her or lift her without Linda screaming out in pain. On Monday morning when she awoke she said to her husband 'I think today is my last one'.

One of our last conversations was when do we stop fighting and give up, I had said to her 'we aren't made of the stuff to give up, but yes there comes a time when we have to stop fighting' I didn't realise that time had come for Linda.

It's down to Linda that I started to look at RFA and ended up going for cryo-ablation in America, so you can imagine that this has hit me hard. I surely would have died long before Linda had she not set me off on this direction.

I can only hope that there is life on the other side, and God takes only the good ones first. I cannot allow myself to believe that once we die that's it, we have learnt so much to become nothing.

Linda will always be in my thoughts and nothing will ever fill the void that she has left.

Wednesday, 8 April 2009

Recovery after Mesothelioma Operation

Well its 12 weeks tomorrow since the operation and apart from the odd problems I keep having I am getting somewhere, or there again am I now having more good days than bad!

I got some really good news today, my haemoglobin is now up to 11.8 so in 3 weeks its raised by some 1.2, I know its a strange thing to get excited about but hey that means my bloods are starting to behave themselves. Even my platins have settled down and I have no liver or kidney infections. This leaves the question of why my Kidney is aching so much but at this moment in time I don't really want to worry or go there. You can call me a coward at the moment but you can't blame me for not wanting to think about it yet, it has been a rough old few months.

I do have some uncertain news, this swelling under my boob or on the rib under my boob has got quite prominent, our local GP came out yesterday and wants me to have a bone scan, fingers crossed its just a broken rib mending the wrong way. I could have gone to see John today but the thought of bouncing around in the car for 90 plus minutes didn't appeal to me, maybe because I'm on the up and didn't want to knock my recovery. Also he is always so busy that you hate taking his time up.

If anyone gets a chance can you please click on the mesothelioma link follow through to the Epp Group and read Womble's story about his operation and success in still being alive today, this will brighten up those who are considering going for it.

I also received an email from a lady out in USA requesting information regarding Cryo-ablation. I asked "how did you get my name" "thank god for Chris Knighton" the lady responded back.

I have also been asked to go with the party to hand deliver one of the petitions for the National Centre for Asbestos-Related Disease at no 10, me outside Downing Street inside the fenced area, what an honour. Can you imagine if my blood was still low I'd look like a ghost within the group, maybe that's why I was put forward! This means a trip to the hairdresser and a bit of pampering!

If you would like to help (its a similar petition to the link I did a couple of days ago, but the more the merrier) then please contact Chris Knighton for a blank form and get your friends and family to sign it and send it back to Chris, so far there are 21,500 signatures lets see if we can get more.

Dogs are roaming around wanting dindins so better leave you all before I make your eyes shut and feed the babe's.

Keep positive and lets win this fight

Monday, 6 April 2009

Mesothelioma Strikes Again

It is with great sadness that I notify you of the death of one of us. Graham died on Friday night\Saturday morning in Hospital. Thankfully Pam was by his side together with his family.

Graham was only diagnosed 11 months ago, his vitality throughout this time was amazing, he kept hope as a number one priority. I met Graham and Pam last year when they came up to visit and find out more about cryo-ablation, unfortunately Graham's tumour wasn't in a good position and until shrinkage could be achived cryo was out of the question.

The tumours went from the top of his right lung, over his shoulder and down his back. This is why surgery could not be used either as it would cause so much damage to his nervous system, blood supply and muscles, plus he could possible lose the use of his right arm, also I don't think the surgeon he saw was willing to take him on

I can only send my thoughts to Pam and hope that over the next few weeks she finds the inner strength to carry on. She told me that she was in denial of this killer and thought that Graham would be with her till they were old and grey

Once again mesothelioma claims a life it had no right to take and another family loses a partner, father and grandfather. When will this ever end?

Governments, Trade Unions and employers should have known better and brought the use of this deadly compound to a halt years earlier.

Thursday, 2 April 2009

Mesothelioma Petition

Before I forget and go ranting on about anything else it is important that you sign up on the following petition if you haven't already done so.

All you need to do is click on the link then it will take you to the document, fill out name etc and email address then send it back. It is important to do this as the petition itself will be going to Dear Gordon Brown. I think the closing date may be end of April so get your fingers moving!

Well I am feeling slightly better but my body isn't, you can't win can you. If the emotional side is 100% the recovery element is about 20% and vice versa. I spoke to my surgeon John Edwards last night and he was telling me that the lady who went through the operation before me is doing extremely well and has no trouble since coming out of hospital. Where she started out badly and has come good, I started out good and ended up doing badly.

I noticed that my feet started to swell up again on Monday so have kept a close eye on them, its 11 weeks today since the operation and I do have to tell myself that I have done extremely well. Not many people would have been back to work by now, even if it is part time, I don't get to watch much day time TV, I did uptil week 7, when I had the blood problem and swollen legs and fluid in my heart but since the water tablets I have improved, plus the extra blood.

Problem is the haemoglobin keeps increasing then dropping. John seems to think this has something to do with the chemo's that I've had as well as the trauma of the operation. Although at present I am finding my kidney on the left side is aching, reminds me of the ache I had before my first cyro-ablation. But I am not going to let my imagine run wild. Have done that a couple of sleepless nights when I've thought I could have a blood clot in my brain hence the headaches, dizzy spells, ears pressurising etc.

I still haven't got over this damn chest infection though and nearly two weeks down on the antibiotics. Phoned the GP's to make an appointment to find my Doc is going on hols for 2 weeks. Have arranged a phone call with him as I need another xray to send down to Sheffield. Hope he rings me back as the only other Doctor I know from the practice has gone to Australia for 9 months to see if they can settle there.

I have also started wanting a drag from a cig, this started a couple of days ago but as soon as I think about it I find something else to do, I'm not craving but just think "I'll have a cup of coffee and a ciggy" Pointless going on smoking tablets as I've cleared the nicotine habit as well as the habit of lighting up. Don't know why I have suddenly started wanting to have a drag. Anyone have any ideas how to stay off them when you have gone cold turkey. I would hate to start again together with the fact that my hubby would probably stop speaking to me and John E would go through the roof and probably throw me out of his clinic.

If any of you reading this blog are still thinking about having the decortication of the lining, then whats stopping you. Not everyone will have to go through the same lengthy procedure I did, done soon enough saves the diaphragm and the pericardium, so to remove just the lining is quite quick and debulks the cancer taking you back into remission. Come on lets get this type of surgery as a normal way of dealing with mesothelioma. The more the surgeons do the better at it they become and if its done weekly instead of monthly or longer then more lives are saved. So I'll say it again, get in touch with Sheffield General if your up North, Leicester and Liverpool for the Midlands, and Guys for the South. Although you can choose to go anywhere. I would still prefer to see the Surgeon who will go for 100% of the disease but if that isn't achievable by surgery you can always go for cyro-ablation later.

I have only written about my experience but I am trying to get a CB to write a piece and link it to this site so you can read a different account of recovery and what his operation has done for him. If any one else out there has gone through the same and has written about it please get in touch with me, as its your personal account it gives more people more feedback on what happened and how good or how bad it actually was.

Once again Lexi and I made the Newspaper, this time it was the Weekly News, and the journalist has written a marvellous piece, she did mention Mick Knighton Research Fund but no address etc for it.

I wonder if we could get a petition going to get cryo-ablation taught to our radiologists in this country, similar to the petition Debbie has going for chemo-emblisation in this country.

It would be uplifting for anyone diagnosed with mesothelioma to have a various list of options to select from being chemo (both ways), surgery, cryo-ablation, info on all new trials and the best palliative. I like cryo because its non evasive and doesn't take long to recover from. Chemo takes months to go through then you have recovery, surgery is what it is, but if surgery is done early enough it's less cutting and less recovery.
Need I say it one more time, this is your life and your responsible for it, its down to you to ask the Oncologists and Doctors who treat you whats out there, as well as doing as much research yourself. Stay pro active in keeping alive, and axe the China Man