Tuesday, 27 April 2010

Call from hospital.

My oncologist called today, he is arranging for me to see a Dr about my fistula issue.
I am going into hospital tomorrow morning and will be having a wireless capsule endoscopy. What that means is I will swallow and capsule like camera and pictures will be taken as it moves through my system. I only have one question, how does it come out!!!

Barbara Bolton


I met Barbara and her daughter, Lesley, on facebook. Barbara had been seeing the Prof and I was hoping she would get through the treatments and have more time with her family.
Unfortunately, Barbara passed away peacefully yesterday morning. She has left behind a broken hearted family.
Again another needless loss, someone ripped away from their loving family because of carelessness and thoughtlessness.

Heartfelt thoughts from all at mesothelioma and me to the family. Barbara, like all the other warriors passed will march forward in the hearts of others fighting for a cure for mesothelioma.

Monday, 26 April 2010

Back from the Drs.

I took Kieran to the Dr's today as he says he has a sore throat. The Dr checked him and he has a throat infection. I also spoke to my Dr who wasn't happy about me being dismissed by the hospital and the ENT Dr not believing I had a fistula.
He is contacting another ENT (ear, nose and throat) specialist who I believe will be in the private sector.
He has told me to continue with the antibiotics for another 5 days.
I was so relieved when he said to carry on. It is good to be listened to.


Dawn chorus again....me coughing that is!!!!

I have been told to stop the liquid anti biotics today by the hospital. I am not sure what happens now but I know I have a very mucky cough which will develop into something else. I feel like I have been left high and dry.
I am hoping my oncologist is at the hospital today, I will ring his secretary today and see if he has returned. I know he was stuck as he couldn't get a flight back because of the volcano in Iceland. I am so hoping he is back as I really need this sorted out.
I have started to make a list of things I cannot manage. Peas, sweetcorn and baked beans are a no no. I tried strawberries but the didn't help, they were too juicy. Potatoes are out, too cloggy as are some milky things. New potatoes, now this is interesting, I have never been able to manage the new potatoes with the skins on, I cough constantly anyway so they are out now as it will be even worse!
Dilute juice, peanuts, even having a drink and bending over which makes it come back out, all these things have happened to me before I knew about the fistula. It seems obvious now but at the time I never queried it as I have always been like it.

One thing I did manage yesterday was a magnum choc ice bar!! It was gorgeous.
A friend on Facebook told me I should have a balanced diet, one in each hand.... : )
I have lost so much weight and I know my Dr isn't going to be happy with it. I am so concerned about them suggesting a feeding tube. I really don't want it but I may have no option if I am not getting the nutrients I need.

Kieran has said he has a sore throat, I am going to get it checked out just in case it is genuine. He also says his back is hurting again. I know why he is doing it, but I have to check things out as if it was a genuine illness I would never forgive myself.
I am so tired and have a very mild ache in my back, fluid is building up. I hope I am not left on the shelf as if that happens I will be admitting myself back into hospital again. My breathing is terrible, it is stopping me doing all the things I would normally have done.
I was told by the hospital that I would be better off out of hospital as there are too many bugs in there that I could pick up. Now there is comforting though!


Sunday, 25 April 2010

Not a good night.

I was awake part of the night coughing again. I don't think the antibiotic syrup is as good as the intravenous one I have in hospital. I can feel the chest infection getting worse. I am very mucky this morning. I don't know what to do now, where ever I go, no one will know what to do. I am waiting for the Prof to answer my email. I will probably get an answer tomorrow. He usually has something he can do but I will wait and see what he says, in the mean time I am stuck with a mucky cough again, swallowing problems and breathlessness. I feel dumped!I am feeling so tired.
What is the point of going to the GP apart from getting it all documented.
I want to get my house work done and spend some time with the children, it seems impossible.
All I need is the fistula blocked off but no one wants to do it as they are all afraid to and I haven't been put in touch with anyone who can do it. My only alternative is to contact Bristol childrens hospital and see if the surgeons there can help. That is where Rich had his op the day after he was born and they seem to know more than the Dr's who deal with general complaints.
There has to be more patients who get this problem who have had a successful outcome. I am not prepared to have a food tube in unless absolutely necessary, I want this sorted out asap.
In the mean time I will struggle on with this chest infection which will turn to pneumonia and probably be back in hospital again next week!!

Saturday, 24 April 2010

Enough of the coughing!!!

I started the day quite well and through out the day fluid has built up again. I had a coughing fit this afternoon, not as bad as last week but enough to worry the childre.
I have a mild ache in my back which I think is fluid that is going in and I am feeling so tired. I think the pneumonia is starting up again.
I don't know what to do now as I have been discharged from hospital and have been told to see my oncologist. He is away on holiday and not sure when he is back as he is caught up in the volcano ash problem.
If I go to the GP, he can't help me. I am feeling pretty discarded at the moment.
The worst thing is the children and how they are feeling. I am not managing at home, I cannot do all I want to because I am breathless and if I do too much I will tire myself out.
I have emailed the Prof but as it is the weekend I probably won't hear from him till Monday and if he says he can help, I will have to try and sort out finances and family again. I feel so let down by the UK. The Dr's I saw in hospital were very good and have admitted they are clueless as to what to do. I haven't seen a specialist who deals with TOF.
I am hoping I don't get ill over the weekend as I will be back in hospital again.
I have lost weight and don't want to lose anymore, I can't afford to. I am so pleased I was into a size 14 and over my BMI as I would look terrible now and probably feel terrible.
I am in a size 12 again and my clothes are too big. All I want it to get sorted out.
I am still going to do my best to have something to eat and drink plenty of water, I want to keep on top of it, I want to remember that I am in control of my illness, not my illnesses in control of me!


Friday, 23 April 2010

Frederick

I am adding this little blog for Frederick, he was my uncle.
I received his death certificate today as I had always been told he died of malnutrition and wanted to know just how long he lived.
He was born on 26th March 1938, he died 15 days later, his death certificate states marasmus which is malnutrition.
I felt so sad as I read it and could not imagine how that poor baby suffered and how my grandparents coped with losing their beautiful son.
There is a strange coincidence with this. I went into hospital on 24th March and was diagnosed with the fistula on 30th March. It seems spooky that it is the same time of year this should happen. How strange these things are.

I feel sure poor Frederick had Oesophageal Atresia and Tracheo Oesophageal Fistula, the same as my son, Richard, born unable to swallow. The operation Richard had was pioneered in 1938 and the first successful TOF operation was done in 1942. Poor Frederick would not have had a chance. This condition is shown to be in congenital so my children now know they may have a child with this condition.

This blog is for Frederick, my uncle who, I am sure, would have been a wonderful person.
I am going to light a candle for him and take some flowers to the cemetery to remember him and be thankful that the operation was available for my son.

Frederick - 26th March - 10th April 1938. Your star is shining brightly baby angel x


I am back!!!


It has been a while since I updated my blog. The reason I have not been around is I have had another bout in hospital. I had a really bad attack of breathlessness on Saturday last week and honestly though it was the end, I was so frightened. I had had something to eat and a drink of water afterwards, I started coughing and brought up the water which then led to a bout of breathlessness which I could not get back. Rich called an ambulance which arrived within minutes and once I had some oxygen and was nebulized felt a little better.
I stayed in hospital all week, just coming out today. I had an endoscopy which was to investigate the fistula and see if there were any other problems. All is well with Theo, my meso, and nothing else showed up apart from the fistula. I was diagnosed with aspiration pneumonia which means fluid is leaking into my lung from the fistula, the tube that is linking my foodpipe to my windpipe.
I have been told if it isn't sorted out I will continue to get pneumonia, not good when I have meso too!!
The Dr's haven't decided if it is going to be sealed up or not. They are passing me back to my oncologist, I will have advice and support from speech and language therapists and dietitians as I will have to change the way I eat. The speech and language adviser said that I could have a tube attached to my stomach for food if i continue to have problems, I am not considering doing this at all. I will manage, maybe i will have to change what I eat and the consistency, I would rather do that than have to go every where with a tube.
I have so much catching up to do. I am not going to go crazy but do need to try and figure where my life will go now.
I have lost a bit of weight and need to get that back on again. I know my oncologist is going to comment on it but I will turn it around. Thanks to all my meso family for their support and to my children, especially to Siobhan for taking over my role with the house and Kieran.


Saturday, 17 April 2010

Morning coughing!!!

Well...I had quite a good night, dawn chorus was noisy, me coughing woke me up. I so want a cup of coffee and am worried about trying it. I miss my morning cup of coffee so much. I am going back to my GP again on Monday because I am so tired of coughing and muck. I just want to know what is happening. It could be as simple as asthma that can be cleared with some pummeling on the back, it could be the fistula that is bubbling when I drink. No one seems interested in finding out what the problem is.
I don't think antibiotics are going to work. The ones I have are huge and like horse tablets!! they did the same as the last anti biotics and made me ill on Thursday which meant a trip to the out of hours A&E surgery.
The breathlessness is becoming an issue. I am finding it difficult to do the simplest tasks without getting breathless. It is so frustrating, I think this all stems from the radio therapy, problem is most Dr's see mesothelioma tatooed on my head. Theo is the least of my problems at the moment. The Dr yesterday said that it is my chest that is the problem when the Dr's the day before said the chest was clear, as have others before. I am completely confused at the moment but do know that I DO have a fistula!!!

Friday, 16 April 2010

What a waste of time that was!!

A picture of my fistula that doesn't exist!!!

I have just come back from the Dr's appointment at my local hospital. I had an appointment to see an ear nose and throat specialist. He has told me that I don't have a fistula, a tube connecting my windpipe and foodpipe!!! I have a picture of it for gods sake, it has been recorded in my medical notes!!! He didn't have the medical notes from my last hospital stay so was arguing with me about the fistula. He had the barium images on the screen and as far as he is concerned there is nothing wrong. Apparently it is my chest causing the problems. I told him I went to A&E surgery last night and my chest is clear. I told him again that I had a fistula and he said if I did have one that would account for the problems I am having.......... AAaaarrrrggggghhh!!!!!!!
Why are we all not singing from the same hymn sheet?
I am so disappointed, this means i will have to wait until it kicks off again and will have to ring 999 and get myself into hospital to get something done. All he had to do was refer me to a Dr who could close off the fistula but he won't because he says I don't have one. I have asked him to contact the Dr I saw in hospital who gave me the picture and report of the fistula, we shall wait and see!!!!

Hospital again.

I had a cup of coffee yesterday afternoon, I thought I was better and had been dreaming of a coffee for a few days...this was a big mistake. I cough and spluttered it back up causing me to be breathless. This went on from around 4 - 9 pm. I called the evening surgery and was told to make my way up to the hospital to get checked out. My lovely friend, Tina was on hand once again to take me up there.
I had my blood pressure, oxygen levels and temperature done, blood pressure was slightly up, oxygen levels slightly down and temperature was slightly high.
I was advised that I could come into hospital overnight but there wouldn't be really much that they could do and as I had an ENT (Ear, Nose and Throat) appointment next morning, to go home but if I felt unwell, to come straight in. I was having a real problem drinking water last night, I couldn't even sip it as I would cough and splutter it back. I was told I was very complex as I had 3 things that could all be problems respiratory wise, how lucky am I (?)
This morning I have tried water again as I am so thirsty. It seems a little easier this morning. I feel like I have a blockage, something is not allowing me to have a drink of anything, food seems ok as it is heavier and seems to be no problem. Hopefully todays appointment will get things resolved as I am so tired of this now.

Thursday, 15 April 2010

Cough, cough and more coughing!!!!

I went to the GP again yesterday and got more antibiotics as I am still coughing and spluttering.
I am on steroids for the throat infection and am not sure when I start to reduce them. My GP and my oncologist are away from their offices due to holidays so I will have to wait to speak to one of them.
I have tried a cup of coffee this afternoon as I thought things were better....WRONG!!!.... i spluttered it all back up.
I have an ENT (ear, nose and throat) appointment tomorrow and hopefully will find out some more information about what is going on. I am sure this is all down to the radio therapy I had in November last year.
It has been going on for the last 3-4 weeks now but the throat infection started around December.
When I do splutter, it makes me very breathless afterwards. This is frightening for the children to see. I have another sick note for work, I just want to get back now but cannot see myself on a phone to a customer with me coughing at them, it just won't work.

Wednesday, 14 April 2010

Barry Roberts

I met Barry on facebook last year and was always very pleased to see his status updates and hi YAY for the day followed by life is good.
Recently he has been taken very ill and unfortunately passed away
Barry lived in Australia and was another victim of the James Hardy company.
When are companies ever going to realise just how much damage they have done to the families of the people who get mesothelioma.
Nothing will ever compensate Barry's family for his loss, like all families, they will have to soldier on with out him. that is crushing.
Todays blog is dedicated to Barry and his wife, Lyn and their families.
Barry will always be a part of the strength that meso warriors hold. We will march on trying to change this wrong doing for everyone across the planet. YAY for the day..... bless Barry and his family and give them the strenghth to carry on and hold him in their hearts forever.....x x

Monday, 12 April 2010

Back from my break.

My friend Tina and I returned home today. My cough is still bad, I am mucky with it and cannot eat or drink anything too much as I cough it all back up.
I have called my oncologist, he is away at the moment but am hoping his under study calls me as it really needs sorting out.

I am a punk rocker at heart, I loved the pistols when they came on the scene in the late 1970's. so it was with great sadness that I heard that Malcolm McLaren had passed away at the age of 64 of cancer, and not just any cancer, Mesothelioma.
He was diagnosed in October last year. I am adding a candle for him and for all meso warriors lost.
For all those still fighting, together we will be invincible!!!

Wednesday, 7 April 2010

Getting ready for a well earned break.

I have been very busy with helping the Prof get his study paper for a mesothelioma trial put into action. We have had some good responses.
Dr John Edwards has been most helpful which is great.
We have got a mesothelioma research foundation in the USA very interested and I hope the Prof can put it forward, I am sure he will.
We are looking for an interventional radiographer in the UK willing to meet with the Prof and help with the trial.

If anyone would like a copy of the Prof's paper to pass onto anyone who will listen or interventional radiologists interested, please email me at Phu_phita@hotmail.com and I will pass it on to you.

Yesterday I was very busy and am feeling it today. I sorted out all the paper work that had built up since i was in hospital, got some shopping in, went to the Dr's, dropped my sick note into work, picked up Richard's computer and had my hair done, which I must say is looking fab.
Today I am warn out, We have a stray cat Siobhan has called Bunker who has a tick on his paw. I am taking him to the vets, with Richard's help, to have the tick removed. We are thinking of taking him in as he is looking a little bedraggled and lonely. The kittens are tolerating him at the moment.
Tina and I are getting ready for our little break away. We are looking forward to it and I think we both deserve it.

Monday, 5 April 2010

TOF explained

The diagram above will hopefully explain the new condition I have been diagnosed with. Richard's type is the first one, out of 100 TOF babies, 84% will have this one, it is the most common form.
Rich had his food pipe (Esophagus) removed from the windpipe (Trachea) and repaired to the pouch that he had. This created choking fits when he was young which were very frightening.

(Oesophagus is spelt the American way)

I have always wondered where it had come from, if it was a fluke of nature. I now know it is more than likely hereditary. My type is the 4% which is rarer than Richard's out of 100 TOF babies, 4% will have this condition. This explains the many chest infections I have had since I was very young. I have always suffered with bronchitis, pneumonia, chest infections and it is good to know the reason why. If the infections continue, the fistula will be sealed up.
Fro more information, please contact the TOFS support group. It is geared more towards babies and young children but am sure they would be interested in adults too as they do a lot of research into why TOF happens.

http://www.tofs.org.uk/

Sleep at last!!!


I have had my first nights sleep completely right through with no disturbance.
When I went into hospital I didn't sleep well, there was a disruptive patient who just made it bad for everyone. Coming home I thought it would be better but no, I was coughing and waking myself up continuously. Last night was the first night I slept right through. I think I have been very overtired and that is why I have had a woozey head.
I am hoping this is the beginning of getting better. I want to be on top form for Thursday as my friend, Tina and I are off for a well earned weekend break. I don't want to let her down and also I want to go. I have work, Dr's, family tax, travel insurance, travel money and lots of other things to sort out tomorrow so I need to get back on top.
Siobhan and Rich have been amazing, they have been so helpful. Siobhan made me chips last night, the first proper meal for a while, if you call it a proper meal!! It was wonderful, best I have ever had. They are doing so well with Kieran as he is very demanding. I am so proud to have such wonderful children.

Saturday, 3 April 2010

onwards and upwards!

Happy Easter to all meso warriors and readers of meso and me.
I am feeling a little better today. I have had some cough medicine and been sniffing Olbas oil which seems to have helped, I am still taking 3 steroid tablets a day which are sending me all looney toon!!!
I feel so very tired at the moment and when I do wake up I feel like I haven't slept at all, takes me a while to come around. I am hoping when I reduce the steroids, I start breaking through the murky head I have.
Professor Vogl sent an email, he has written up a paper to support a trial and wants to get it to the people who will hopefully help push it through. I have told him that myself and other warriors will help him. He wishes everyone a Happy EASTERN.... : ) He is so charming.
I feel honoured to be helping him move forward with this goal. More people are surviving Mesothelioma because of him.

Cough,cough,cough....ggrrrr!!!

It is 5:50am and I am up cough, cough, coughing...!!! It is driving me bonkers.
It is very mucky as well which then causes me to be sick, such a vicious circle. I believe the sickness is reflux because that runs parallel with the fistula, Frederick.

Frederick will be sealed up if he starts giving me grief. I need to get shot of this cough as I am taking a well earned break next week with my friend and I don't want to be coughing the whole time. I have taken some cough medicine and got some olbas oil on a cloth. I am hoping this will shift it, if not it is back to the Dr's on Tuesday, I really could have done with an extra day this week.
I need to ring Dr D about the steroids I am on as I will have to get some more and find out when he wants me to cut them back. I have some other paper work to catch up on that is important and needs to be done before my break. I want to say thatnk you to Richard and Siobhan's dad for taking Rich shopping, it has been a real help as my head is not capable of being behind the wheel of a car. So many people have been so kind and helpful, especially my gorgeous friend, Tina. She hasn't stopped running around, even to helping me get Kieran from his school on Thursday.
Thanks also to all you lovely people who email and contacted me on facebook.
It is such a great boost.
Well Frederick, Theo and I are off to bed and will be back on later tomorrow....... golly I am sounding like a looney toon... darn steroids....or is it????? : )


Friday, 2 April 2010

Pictures of my TOF.

I asked the thoracic surgeon for a photo, it is amazing. the fistula is in the top right corner by the punch whole.
These are a couple pictures of my TOF. It is looking a bit sore as I have had a sore throat. It is the view down my windpipe. the fistula is connected to my food pipe.
I apologise if it puts some people off but I am proud of it and thought some people would be interested, Nothing is going to be done about it unless I get recurrent chest infections and then it will be sealed up.

As for Theo, Well he has been very quiet. I have decided to call mt fistula Frederick, after my uncle who died within a month of birth. My mother always said he died of malnutrition and I have been wondering if it was due to being a TOF baby as there was no operation in 1938 but I think the first TOF operation was done in that year as a study and was done in 1942 which, I believe, that is when the first child survived.

I now know that the disease in congenital and my children will also have the knowledge that if it has touched each generation, they have a chance of a child with it.

Back to Theo, he has been very good. No problems at all, even the Prof has said it is stable.
I am going for a short break next week with my friend Tina if all is well. I am hoping to be fighting fit for that. I think I need it.
I am off work for 2 more weeks!! I will get back to work at some point, I am missing my work mates so much.