Wednesday, 30 June 2010

Off to Manchester!!!

I am not supporting BLF now as they cannot get the TV intersted and have decided not to go ahead with me travelling to London. I am happy with that and will go back to my original arrangement.
Kieran and I are off to Manchester to meet meso warriors we have met on facebook and it is action mesothelioma day on Friday. We have known them a while so it will be great to see them face to face.
His dad was going to take him if I couldn't go and as I am going now, his dad is coming along too and will spend time with Kieran while I chat so we are all happy.

I am feeling much better today, I saw the dietitian yesterday who has told me to eat lots of small snacks rather than try having a large meal.
This is easier for me at the moment.
I will post pictures of Manchester as and when I can.

Tuesday, 29 June 2010

Dietitians today.

I went to Kieran's school this morning to talk to the school dentist. Kieran was put on a list about 3 years ago to see a specialist dentist because of his autism. We are still waiting to hear about an appointment.
I will give them a bit of time to work on this request and then start pushing to get an appointment.
I went to the dietitians today and got the same answer I usually get, I am very complex. Because I am a veggie, I have the fistula, I have the cancer and I now have gall stones, this has complicated things. I think the dietitian is happy to leave me sort out my diet as it isn't a bad one.
I am not sure what is happening with Friday now as the British lung foundation as they haven't finalised anything. I will be going to Manchester as planned if nothing happens.

Monday, 28 June 2010

Feeling much better.

I felt terrible on Friday, was ready to admit myself to A&E. Saturday morning I felt much better. I went to the wedding with Kieran and managed cheese and crackers. Saturday evening I had cucumber sandwiches and tomatoes. Sunday I felt even better, Chip buttie for tea!!

Today I had a blood test to find out how my liver was functioning. My oncologist called and told me all was well. I had had a stone that had now passed. I will remember this if it happens again.

I am also very excited about Friday as it is action mesothelioma day and I have been asked to do some publicity in London as Craig Phillips will be there all day supporting the event and they want a case study too.
I hope it goes ahead, Siobhan is coming with me.

Friday, 25 June 2010

Blood test on Monday.

My oncologist has called and I will be having a blood test early on Monday to look at my liver function.
The MRI did not reveal any blockages but I do have a lot of gall stones although they are not causing a problem.
I hope there is nothing sinister, it isn't cancer which is great but will find out more next week.

MRI done.

I have had the MRI, which is called an MRCP, scan done. I have found out that my oncologist is away next week and started to panic as I don't want to be left another week with not eating, sickness, pain and retching. There will be a radiographer who will look at the images around 5pm and will contact my oncologist with the results. Then I don't know what is happening. I am hoping he rings me as the radiographer won't tell me anything.
If no one rings this evening or Monday, I will be admitting myself to A&E as I cannot go on feeling like this.
I may not be able to go to Manchester now if I feel ill so Kieran's dad is willing to take him as the train and hotel are all booked and paid for.
Kieran and I have a wedding tomorrow and it looks like that may be a no no too. This is not good for my social life.... : )
I will add more info when I get it.

MRI today.

I am having an MRI at 4 today. I hope something gets sorted out soon as I am starting to feel so ill.
I can't walk very fast because if I do i will start wretching. I am so hungry, can't remember the last time I had a meal and with the weekend upon us again, nothing is going to be done today, it will be next week now.
Tomorrow I am supposed to be going to a wedding and next week am booked for Manchester. Kieran is looking forward to the Manchester trip and I hope we can go.
I will have to wait and find out what the MRI kicks up.
I am developing a tan for all the wrong reasons!

Wednesday, 23 June 2010

A good day today.

I had a routine breast screening just over a week ago, I had a letter last Friday for a second screening. I have been terrified and was worried about what might show up. My friends, Gina and Carolyn, came with me. I had a second x-ray and an ultra sound. I am happy to report that it was cysts showing up and nothing sinister......phew!!!
I then went over to the other clinic to see my oncologist as I have had a pain in my side and am not eating. He was magnificent, he ordered an ultra sound on my liver and it was discovered that I have gall stones and the likelihood is that there is a stone blocked. I will be having an MRI on Friday to confirm that.
I am so relieved that it is something that can be easily dealt with.
My friends have stayed with me all day, how wonderful they are.

Tuesday, 22 June 2010

1,100 post!!

I went to the GPs again today. I have a terrible pain in my side and am still wretching. I was given anti biotics as I have another chest infection. I can't take the anti biotics as I keep bringing them up. I had a blood test done yesterday and got the results today. There is something happening with my liver!!......oh Yippeeee, more problems!!
My GP seems to think it is inflammed, all I know is that it really hurts. I am still not eating anything and drinking very little.
My oncologist has been contacted and I am waiting to hear from him.

Monday, 21 June 2010

Drs today.

I have an appointment with my GP this morning. For the past 4-5 days I have felt so ill. I have a constant pain in the abdomen and am feeling nauseaus. I cannot keep anything down and am not sure if it is the anti depressanta that are doing it. I still have no appetite and am getting cheesed off with it all now.
I hope I can get things sorted out today.

Sunday, 20 June 2010

Fathers day.

Another Father's day passes without my gorgeous dad. I miss him so much. I know if he was here he would be so supportive and wise and would help me through all this trauma that I have had over the past 4 years. It hasn't ended yet though, more things are on the horizon and i am hoping it will be the answer I want. I don't think I can take much more bad news.
I am going to the cemetry today and will have some private thought while I lay some flowers there for my dad.

Yellow roses grow in heaven, Lord pick a bunch for me.
Place them in my father's arms and tell him they're from me.
Tell him I love & miss him. When he turns to smile, place a kiss upon his cheek and hold him for a while;
because remembering him is easy,
I do it everyday.
There is an ache in my heart that will never go away.

Miss you so much Dad, you were taken far too soon. love you so much x x x x x

Saturday, 19 June 2010

Well done Rex and Pat.

Pat has non small cell lung cancer and was diagnosed 2 years ago. Her husband contacted me for details about the Prof. After Pat's 4th treatment in Germany, her cancer has reduced by 40%. Pat did a radio interview and explained about the treatment and how it has turned her life around. Well done Pat, I am so pleased that you are getting a result and I hope it continues.
To listen to Pat's interview,

log onto : http://www.bbc.co.uk/programmes/p0021kmd

and listen to the 17th June broadcast, one is at 16 minutes in and the other is 1 hr 4 minutes. It is on the site for another 4 days.

I have been feeling very nauseous over the past few days. I think it could be the anti depressants I am taking. I am not eating properly and have no appetite at all. That damn stent has a lot to answer for. I haven't been back to normal since it came out. I will be seeing a dietician next week and am hoping to see speech and language but as the fistula is a complex condition, they don't really know what to advise me.

Kieran and Siobhan are still suffering with hay fever. I have ordered an allergy reliever and hope that it helps them as nothing else is at the moment.



Thursday, 17 June 2010

Kieran at the Drs.

Kieran and Siobhan have really bad hay fever. It is making them feel miserable. I am taking Kieran to the Drs this morning as he says he has a sore throat and is coughing a lot.
I have made an appointment for myself as well to check I haven't got another chest infection as I have a pain in my back. I also want to ask about the swallowing problems i have now since the stent came out. I am sending Prof Vogl my results from last scan, I was amazed how well I can see the stent on it, I will add some pictures to the blog when I have more time, I have to go now or we will be late for our appointments!

Sharon's day.

The funeral was wonderful, it encapsulated everything Sharon was, Her fight and determination and the dignity she displayed in life was the same as she went onto her next world. Jim was so upset and that was heart breaking, he doesn't know how he is going to cope now without his angel.
I met Mic at the funeral, she works for the local heart radio and put sharon in touch with me, we kept each other company during the service.

How does anyone move on after losing someone special? We all seem to manage some how, special people around supporting each other makes the fall a lot gentler.
The picture is from my 50th birthday party last July, Sharon came along with Jim, She was such a beautiful lady and will always have a special place with me.


Wednesday, 16 June 2010

Sharon Lowndes.

I am going to Sharon's funeral this afternoon and will celebrate the life of this beautiful lady with her family.

It is so sad when cancer takes someone special from their family.

Sharon had liver cancer and battled on with a fighting spirit. She was a wonderful lady who will be missed by many.

Be at peace beautiful lady, you will be in my heart forever. x x

CT results from May.

IMAGING REPORT

CT Scan chest abdomen pelvis

Comparison has been made with previous scan of March 2010.

The tiny long-standing traceo-oesophageal fistula, presumably congentinal, has been stented. I am not sure of the indication for this. The fistula is however not covered by the stent (slice 576.6)
The mediastnium is otherwise unchanged in appearance. The left side mesothelioma and internal mammary glands are stable in appearance. The nodules in the right upper lobe show continuing signs of improvement. There is however some callapse in the middle lobe and which associated tree in a bud appearance and there is now similar appearances in the left upper lobe. These likely to be infective in aetiology and may consequent upon aspiration.

There is no evidence of disease in the abdomen.

Conclusion.
Stable appearances of the mesothelioma. Tree in bud appearance are present and in middle lobe and left lung which are likely to be infective.

Monday, 14 June 2010

Breast screening today.



I had a wonderful weekend in St Ives with Tina and Lee. The weather was beautiful.
Today I have my very first breast screening, as I am now 50 I will be having this every 3 years. I have been feeling very tired over the last week, I have a pain in my right side at the back, I think I have a slight chest infection. I will make an appointment with my GP this week and see what he says.
Kieran didn't want to go to school today, he has hayfever which isn't much fun, I told him the sun will be out at home and at school so he will feel the same no matter where he is. It isn't much fun for him but keeping him home isn't really going to help it.
Siobhan is the same, they both get hayfever and it does make them both feel miserable.

Friday, 11 June 2010

St Ives!

This will be my 3rd trip to St Ives. I am going with Tina and Lee for the weekend.
I am hoping the weather will stay good.

I have been looking into mesothelioma and the types there are. I have found a link that explains it well.

http://www.resource4mesothelioma.com/topics/mesotheliomatypes.html


Copy and paste the link into the address bar.

This could be why some people do well with the Profs treatment and some don't.
I feel very lucky, again!! I have the Epithelioid mesothelioma. This one stays in the lining of the lung and travels to linings of other organs. The Sarcomatoid mesothelioma spreads to the bones, muscle and cartilage. It is a rarer form of mesothelioma. The 3rd type is a combination of the 2.
This has to be one of the nastiest cancers around with so little research and funding put into it.

It's about time it changed. The people with this disease didn't ask for it. I don't think the employers who paid people to work with asbestos knew that it would spread to 2nd and 3rd generations. This is an epidemic that will continue to grow over the next 5-10 years or more.





Thursday, 10 June 2010

Robert Clarke 1961 - 2003


I am going to the cemetery to lay some flowers for my lovely cousin, Robert, who died in 2003.

He was coming up for 42 years old and was taken far too soon.

I still miss him , Siobhan and I left some flowers in the remembrance garden and left some for my dad too.




Monday, 7 June 2010

Sharon Lowndes.



It is with great sadness I add the passing of a lovely friend. I met Sharon and her husband, Jim about a year ago as Sharon had liver cancer and was interested in the Profs work. She never got to Germany for any treatment.
The picture above is from my 50th birthday party last July. Sharon was a very brave a beautiful lady.
I am dedicating todays blog to her and her family.
Condolences to Jim and the family and hope they can find some peace and help them to know she is now pain free and looking down on them from her shining star.

Train trip to Exeter.



Kieran and I went on a train trip to Exeter on Saturday. He doesn't want to go into Exeter city centre, he likes to stay in the station and watch the trains come into the station and leave. It was a lovely day and I thoroughly enjoyed spending time with him.
He is back to school tomorrow after he has spoken to Joanne from Jeremiah's journey.
He is coping a lot better now and hasn't complained of a bad back for a while.

Thursday, 3 June 2010

Whitehaven.

It is a beautiful sunny day in Plymouth, I can't help but think about all those people in Whitehaven waking up to life without their loved ones due to Derrick Bird running rampage through the place and killing 12 people. 25 are injured, some critically, what drives someone to do that?

Thoughts are with the families and loved ones of those who have perished and a speedy recovery to those who were injured.
I am dedicating todays blog to all of them.

Wednesday, 2 June 2010

Meeting Cliff.

I met Cliff for lunch, he very kindly paid for everything and we discussed my treatment in Germany and how he is at present. I was surprised that he teaches roller blading, I think he maybe late 50's - early 60's and keeps himself fit. He was diagnosed a year ago and is very positive about how he feels and how he will continue. This is great to hear. The internet is littered with negative comments, mainly in the professional quarter so it is always good to see the positive. I am sure we will meet again, he has given me a few tips on protecting the children's assets which is very helpful.


Anti depressant time.

I have just come back from the Dr's and am feeling so miserable at the moment. I feel like I have the weight of the world on my shoulders. I should be happy, I have got my life back, I could slap myself for feeling like this.
I have not been well for 2 days now, I think it could be the Omeprozole tablets. I didn't take them this morning and am hoping I start to feel better through out the day. I have no appetite at all and feel like I have eaten an enormous meal. Well... I am going to stop winging now and am going to get ready to meet Cliff from Newton Abbot who has mesothelioma. He used to be in the Navy but is now a financial adviser I believe.
I am meeting him at the Novotel at Marsh Mills, Plymouth at 1 as he wants to discuss mesothelioma treatments.

Getting off the subject, Stork brought in a bird and then a huge hawk moth yesterday, I do love him but not his gifts!
Cookie has not returned home, I do think we have lost her now. I am going to try again with the ads and offering the £200 reward in the hope that someone finds her. I just hope she is being well looked after as she is a lovely little cat.

Tuesday, 1 June 2010

1st of June and its raining!!!

The first day of summer has arrived and it is raining!! How wonderful not to have anything other than rain for an English summer.

I am feeling so lethargic at the moment and can't seem to get motivated at all. I am off to see the GP tomorrow for some thick and easy powder, it is put in drinks to thicken it up as the liquids can be too light. I haven't had any aspiration problems but at least if I have that it may help. I am at a loss as to what to do about the fistula. The Dr's don't know what to do so I am stuck with knowing that I will probably get pneumonia again at some point. I will organise to go back to work, I need to get myself back on top, I have lost a lot of weight over the past 2 months and want to get it back on again.

Kieran is with his dad for a few days, they will be having a train trip, Kieran's favourite thing to do, I think they will be traveling to Exeter.
I am taking Kieran to Manchester in July, he will enjoy looking around the station. We are meeting some mesothelioma warriors and also marking action mesthelioma day.
As for today, I don't feel like doing anything again, what is wrong with me!!!