Wednesday, 30 September 2009

Appointment day arranged.

I had a call from my oncologists secretary today, I am seeing Dr D on Wednesday next week. I am going to ask for a specialist nurse to be present as well as i find my oncologist gets very agitated and I feel he can't wait to get me out of his room as he doesn't like to see me emotional.
The appointment is at 2:20pm next week.
I went for lunch with Anne today, she lost her sister to Mesothelioma in 2006 and everything is still very raw. It was good to see her as we don't get a lot of chance to chat. I am sure we will be meeting up again.
Kieran went back to school yesterday and all was ok as the boy wasn't in school. I can't say the same about today, he had been got at again. I don't know what else to do. I have gone to the school on numerous occasions and have been told that Kieran needs to go so they can sort out the issue.
He is petrified and I feel awful sending him when I know this boy is after him.


Well done to Sam who has had the results of his first treatment, he has had a 5% reduction. It's going in the right direction, hopefully the next one will generate more.

Monday, 28 September 2009

Jersey


Tina and I had a very relaxed weekend in St Helier, Jersey. She booked it as a 50th birthday present which was lovely. Just what we both needed although poor Tina had toothache all weekend.



Kieran home from school again.

Kieran was very upset and this morning about going to school. My friend, Julie, met me at his school and we discussed the issue with one of the school assistants, It seems more measures have been put in place to stop the boy attacking children in school.
I felt uncomfortable sending Kieran to school today and have talked to him about returning tomorrow.
He is still upset but I have told him things have changed since he went last week. I really hope I am not leading him into the lions den.
He will be going to school tomorrow and hopefully all will be well.
I am taking Steph to an appointment tomorrow morning. She is still fighting and is an absolutely wonderful person, so courageous.


Back from Jersey,

I have had a lovely, quiet, relaxed time in Jersey with Tina.
I will add some photo's later. I wish I still wasn't feeling so miserable but I do.
Kieran is so worried about shool tomorrow, I am feeling so guitly about sending him in to be abused and am worried that he will be badly hurt.
He was terrified this evening, I don't want him to go. If I went to work every day and was atacked for no reason, I would feel terrified too and I would expect my boss to deal with it asap.
Kieran is told that it takes the boy a while to settle and he has to put up with it until he is.
This is not on, why should he have to do this?
I am taking him to school tomorrow and will decided when I get there if he stays or not, I will also be talking to the teachers about it.
It is 3:44am, my shoulder is still aching and I feel like I want to cry forever.
I hope upon hope that the PET scan is good and I can at least get one thing off my back.
I am not looking forward to seeing my oncologist though. I am going back to bed now and will hopefully get some sleep before the alarm goes off. I will add the Jersey blog later tomorrow.

Friday, 25 September 2009

good morning?

It is 4:30 am and I am awake. I am not stressed about the appointment with Mr D, well, I don't think I am.
I have the pain in my shoulder again and the lovely rigors back. i had the rigors, shivering and shaking as the body is like a thermostat , when it gets to hot it shuts down and switches back on. It isn't as bad as the ones I have had.
So hear am I sat on my sofa, wrapped in a duvet, trying to get warm. Itis a wonderful sight for any burglars attempting to steal my worldly goods. : )
I have taken some pain killers, something I rarely do, as I need to sleep.
I had some information sent to me from Alan in Liverpool, he has meso and has been seeing a homeopathist. I will post his info on the blog as he is the person who found mistletoe could be prescribed on the NHS.
Apart from this. I am fine so will try and get some sleep before the morning.


Thursday, 24 September 2009

Good day today

I was woke this morning by a phone call at 6:00am. I was worried about who would be calling at such a time but I had no need to, It was Germany calling, it is 7:00am there. The lady on the phone asked if I was Mrs Breever, the W is a V in Germany, and I said yes and she said one moment please, And there he was, my angel, Professor Vogl, does he ever stop working.
It was good to hear from him. He asked about the PET scan and said we would know more about the lymph node after the scan. He made me feel much happier than I have been.
I went off to the scan very happily, My friend, Gina, picked me, she insisted I don't go on my own.
We went to 3 different places to find the Peninsula radiology Academy and all was not as bad as I thought it would be.
I went in to the area where the scan would be done, I was injected with the radio active dye and told to sit and rest for 1 hour. I then went to the toilet and then back into the area where the scan was done and laid for around 20 - 30 mins for the images to be done. It was so strange to be told to wlk 3 yards in front of the nurse because of the contrast.
No contact with pregnant women or children under 5 for 6 hours after the scan.
It was easy compared to the normal CT scan and I was surprised how much ot costs, £25,000!!!
I offered to pay through my insurance but was told it was on the NHS!
I now have to wait for an appointment with my oncologist. I intend to tell him how I feel he has acted and how I need him to not give up on me. What I am hoping for is that the lymph is large due to infection.
I am off to Jersey tomorrow which I am looking forward to. My lovely friend Tina booked it as a 50th Birthday present. Tina needs a break as well so I am sure we will enjoy each others company and chill out as we both need it at the moment.
Kieran is still having a bad time at school. I am not happy with the situation but will continue to sort things out next week,.

Wednesday, 23 September 2009

Fears back, twice in one week.

I have my PET scan tomorrow and at the moment, I am terrified. Terrified of dying, of losing my family, of not being around for my little boy and my older 2 children.
I am scared of what might happen with the results of this scan. I try so much to feel positive but at times it is so hard.
Kieran has had a really bad time at school, I saw his teacher today and it seems they are doing as much as possible to protect him. It is times like this that it all comes back, of just what might happen and who will fight for him like I do. What will he do with out me.
What will Siobhan and Rich do?
Siobhan with her very bright future and Rich who still hasn't decided what he is doing. I need to be here for them, I need to be here for me and to fight my corner as I and many like me shouldn't have to go through this.
I hate asbestos for ripping my father away from me and for trying to do the same to me with my children.
Professor Vogl, wonderful as always, won't give me any results till he sees the PET scan, he says he has his "fingers crossed".
I only want the simple things in life, I am not asking for a lot, just to have a life with my family, I want to see them grow up and get their own lives and I want to be there to help them.
I am determined to live, I feel really well and this is what makes it harder, I need positive words from Dr's not the usual negative stuff.
I want to prove them all wrong by surviving for at least another 20 years or more.
Gina, my friend has been wonderful and won't let me go for the scan alone. It will be 2 hours, 2 hours of thinking time, 2 hours of wondering what this scan will reveal.
I am hoping with all my heart that my instict is as good as it was in 2006. That i know my body better than anyone and if I feel all is well then it is.
I don't know if I want any more scans, I feel I would rather be left alone when I am happy but I know I need to do it for the Prof and for future meso sufferers.

(Come on Linda Lymph node, help me out, do you fancy a trip to Germany? Theo's pad is huge, he would welcome the company.)


PET scan tomorrow.

It has been a busy day today. Kieran didn't go to school today as he was attacked again.
He was very upset this morning as he is now worrying about what will happen if he goes in. I am having another meeting with school to discuss the issue.
I went to see my solicitor who is dealing with the sale of the house. All is looking good, it felt like she put out the begging bowl yesterday as I said I didn't want the house if the sellers weren't prepared to compromise over the costs of the repairs to the house. They have agreed to pay £500 towards it, the estate agents are putting £300 towards it and my poor buyers were asked to foot £200 towards the repairs. I have said no to my buyers paying as I felt that was not fair and they have waited too long to have this little house.
I am just waiting for the final pieces of information to come through and we should get a date.
Surprisingly the sellers aren't making a lot of profit on the house as it was purchased for £138,000 in 2004.
I have the PET scan tomorrow, I received a phone call this morning to tell me when and where.
It is at 9:30 am, it will be an early start as I am picking up Steph and Ali as Steph has a scan at 10:00 am and Ali can't drive due to her pirouetting off a scrambling bike and breaking her arm.
The PET scan will take 2 hours to complete. Comfortable clothes are to be warn and no jewelry
either.
No contact with Pregnant women or children under 5 for 6 hours after the scan, and it is being done on the NHS!!!
Hopefully the scan will show that the cancer is under control and the enlarged lymph is to do with the infection I have.

Tuesday, 22 September 2009

Feeling much better today.

I went to see my GP yesterday and found I had a temperature as I still have an infection. I was given some more antibiotics. This makes me think even more that the lymph is enlarged due to infection and not anything to do with Theo, poor chap gets blamed for everything.
I have a nother 4 weeks off work and will discuss cutting my hours back to 16 hours a week rather than the 30-40 I was doing.
I don't want to give up work as it has been great having friends and socialising with some wonderful people and I really don't want to lose that.
I rang Dr Maria at Park Attwood today and discussed all my ongoings over the past few weeks with her. She has recommended taking the antibiotics as this won't interfere with the mistletoe treatment.
She also asked me if I would come to Park Attwood for a conference with a German Dr and some students about chemoembolisation and mistletoe working together.
I said yes, I will travel up and I am sure I will find it interesting as well.
I am feeling rather lifted now and feel I am getting back on track.
I am off out for lunch with my friend, Tina, which I am looking forward to.
I also have a visit from St Lukes this afternoon to discuss family tax credits due to the reduction in hours and DLA as mine is about to be renewed. I want some help filling in the form as I know how the accessors of the forms are, they are very particular.
It has to be the worst case scenario.
Well.... I will update the blog tomorrow as I know I have been a little behind with it all at the moment.




Monday, 21 September 2009

Dr's today and new sick note.

Once again I have been woken up by pains in my back. I don't think it is Theo as it is in a different place. My thoughts are that it is from the pneumonia and chest infection a few weeks back that hasn't cleared up.
I am seriously thinking of writing a letter to Mr D, my oncologist to make him aware of the logical reasons for what he has picked up in my CT scan. This could be why there is a change. If it isn't, then I deal with it the best way I can.
It has to be considered and not the drastic treatment he wants to do which may cause damage to healthy tissue.
Kieran is back to school today, He knows he has to stay there, he has exercises to do from the GP.
Rich reckons he is going job hunting today, voluntarily I might add!!
What is happening with the house I do not know, I have left it with the solicitor.
Jenny and Ricky are in Park Attwood this week, he has Meso and is trying the mistletoe therapy to see if it helps.
I feel a trip to the clinic is looming but at the moment, it isn't possible. It may have to wait a little longer.

Sunday, 20 September 2009

Up too early again.



I













I was woke up by a pain in my arm this morning at 5:10am.
I have taken some pain killers and will discuss this with my Dr tomorrow.
It is the same side where Theo resided
I don't think it is anything to do with Theo, he is doing ok in Germany. I don't like him blamed for everything, it isn't always his fault.
I will be interested to see what Prof Vogl makes of the CT images. I got them on Friday and sent them off, with the report, straight away.
I am now looking out for an oncologist who would like me to continue living instead of mine who would happily see me in my nice purple box I ordered in December 2007.
It is not going to happen yet, it can't, I want to see my little girl graduate next year. I want to see Richard turn 21 and most of all, Kieran needs me.
Theo has been amazing so far and I am not going to have him targeted when he hasn't done anything.

I had some beautiful flowers delivered yesterday from Jenny and Ricky. Ricky has Mesothelioma and is about to start his journey with Prof Vogl. He is off to Park Attwood tomorrow for Mistletoe treatment and then to Germany for chemoembilisation.
The flowers where gorgeous, Thank you Jenny and Ricky and I genuinly hope it all works out for you.
Good news from Gary, his first treatment has given him a 10% change in his Meso.
Well done Gary, lets hope it continues!


Saturday, 19 September 2009

Getting back on top

I am still fighting my way back up to where I was before Wednesday.
I have sent to C.d.'s of the images to Prof Vogl and will hopefully get a better idea of what is happening.
I am sick and tired of my oncologist giving the doom and gloom scenario. I can't believe he wants to do radiotherapy on a node that he doesn't know if cancer has been the issue.
It has only enlarged since June 2009, I have had an infection since then.

I have been reading a book for McMillan and in it is some information about the polio vaccines that were given between 1954 and 1963. They were contaminated with a virus, Simian SV40.
It is found in rhesus monkeys and has been transferred to humans. Humans can transfer it through bodily excretions if they are infected. This virus has been found in Mesothelioma patients.
I am going to find out a little more about it as the vaccine was given world wide and it could explain why some people get Meso and others don't.
The book, "100 questions and answers about Mesothelioma" is brilliant.
I am doing a book review to find out if it would be something suitable for the UK market as it is an American book.
If anyone is interested in taking part, please let me know and I will pass on the relevant message.
I am off to Jersey next week with my friend Tina, she is so sweet, she booked it as a 50th Birthday present for me and I must say that it has come at the right time.
The week after we are off to Newcastle for the Mesothelioma UK meeting. this is always a good event, many Dr's, nurses, patients attend and questions are asked about anything to do with Mesothelioma.
Kieran is back to school on Monday, he has had a bad back due to riding his scooter again and stayed off school last week. It will be all back to normal on Monday. I am at the Dr's on Monday for another sick note. I don't feel I can face work at the moment.

Friday, 18 September 2009

Back on track.

After the shock of what my oncologist said on Wednesday and the way he dealt with it, I am going to start getting my self back on track.
It was awful waiting all the working day to get the results of the CT scan. My psychology of the appointments is up the spout, thought I was on to some thing there : )
After reading the report over and over again, I think I would now like to go back and ask questions as there should have been a specialist nurse on hand, But as there wasn't, I will evaluate on the blog.

The right groin area where he says there are new nodules and they have grown are probably accountable for. If he had read the information I gave him from Prof Vogl, he would know that the operation entrance for the chemoembolisation was there and this could be scar tissue.

The lymph node would most certainly be enlarged after pneumonia and chest infection which I am getting over at the moment. He should have known that!
He should also have offered a PET scan as this would determine if it is enlarged due to cancer or not. Instead he said he would blast it with radio therapy.... no way Hose'....if it ain't broke, don't fix it!!!

Prof Vogl read the report and said PET scan right away. His attitude is so much more sincere than my oncologists.
I was very emotional after speaking to Mr D, my oncologist, on Wednesday and all he was concerned about was me going out of his office upset, he kept telling me to compose myself??
Mr D, I am upset as I have been given bad news, hang on, shall I just lay down and accept what I am being told, I think not!!
I am seriously thinking of changing my oncologist again, I don't have the Mesothelioma consultant as he was the guy I saw first time and he was worse than this one.


Well....look out, Debbie is back and is on a mission to again, prove you wrong.

Thank you to all the wonderful messages of support and kindness from people I have never met.
My wonderful friends and family, thanks....your fabulous!

Sounds like the Oscars now..... : )
I love my website, It has been a great tool for support and has a wonderful community on it who are willing to help others even after their own losses.

You all have the Meso and me award for being wonderful.


Thursday, 17 September 2009

Imaging report

CT chest abdomen and pelvis

Clinical details

Malignant pleural mesothelioma. Has had intra-arterial chemotherapy in Germany with good response ? further response.

Technique

Post oral and intravenous contrast CT scan of chest, abdomen, and pelvis compared with previous CT chest and abdomen dated 30/6/2008 (Derriford PACS)

Findings

The nodular circumferential pleural thickening most prominent within the base the left hemithorax with associated loss of volume, has significantly improved from CT scan 30/6/2008 but unchanged from that of 8/6/2009. The left superclavicular , left axillary and left pre diaphragmatic lymphadenopathy is unchanged, as is the prevascular, paraaortic and para-oesophageal lower posterior mediastinal lymphadenopathy, within the lower pole of the left hilium anterior th the left inferior pulmonary vein which has significantly increased in size from the previous measured 21 x 18 mm on the studyof 8/6/2009. There is a new 5mm nodule and several smaller new nodules within the lower left lobe. Ill defined patchy opacification predominantly within the right upper lobe, in keeping with inflammatory changes, has not changed from CT of 8/6/2009. Within the abdomen the small volume coeliac lymph adenopathy is unchanged from 8/6/2009 although improved from 30/6/2008. The liver,pancreas, spleen, adrenal glands, kidneys and territory remain normal, No peritoneal nodularity nor deposits.

CT chest Abdo pelvis with contrast

There is a small volume left inguinal (13 x10 mm) and right external iliac (14 x 11 mm) Lymphadenopathy , which is unchanged from the study of 8/6/2009.
There is a cluster of Lymphadenopathy with in the right groin, the largest measures 14 x 13 mm this has slightly increased in size from the study of 8/6/2009 (11 x 9 mm). The pelvis was not imaged on a previous occasion.

Comment

Significant improvement in appearances of the left pleural mesothelioma in comparison to the pre treatment CT (30/06/2008) and unchanged from the CT of 8/6/2009.
There is however a nodule mass in the lower pole of the left hilum which has significantly increased in size from the Frankfurt CT of 8/6/2009 and several new small nodules in the left lung base. Unfortunately these appearances are in keeping with progressive disease. The significance of the small volume bilateral inguinal regional lymphadenopathy is unclear, although within the right groin has slightly increased in size from 8/6/2009.
This would be an unusual site to metastatic spread for malignant pleural mesothelioma. If there is no other clinical explanation for this , I would be happy to perform an ultra sound with view to a core biopsy (if excisional biopsy is not considered clinically appropriate) of the right large groin node.

Meso appointment a disappointment

I saw my oncologist yesterday afternoon, such a long wait for an appointment. My theory about the psychology of appointments was completely wrong.
My lymph node has increased in size. I was devistated yesterday and felt thrown back to when I was first diagnosed.
I am so angry at the way my oncologist has dealt with this. I know I was upset but I think he could have explained things better than he did. I am not sure why it has grown, it could be due to the infection/pneumonia or it could be cancer cells.
I am going to add the whole report to the site. Hopefully writing it down and going through it slowly will help me make more sense of it.

It looks like we have yet again, lost another house. £1,900 worth of repairs and the sellers say that can't reduce the price. I was looking forward to moving as were the children. How difficult can it be to buy a house?
The price of rebuilding the house is estimated as £130 by the surveyor andf the sellers want £148. They are not prepared to reduce the price to accommodate repairs. I don't think they will get that offer again if the house if put back on the market.
I am out, as the dragons would say, and need to concentrate on the children and me. They are all shell shocked, just when we thought all was going so well, it all comes crashing down. I do look around and see people going through more than I am with a smile on their face. One of these is Steph, she will inspire me to kick my butt back into action. I am not giving up just yet.

Wednesday, 16 September 2009

Here we go again!!!

And it has happened again, that thing I haven't thought about for 3 months is back. It is 2:30am and I am awake with my mind racing about what will happen later today. I thought this time I had got away with it but I feel if someone says to me "how are you today" I will break down.
I am not mmmmmmmmmmm, sorry, that is Stork walking across the keyboard as I try and write this with tears rolling down my face.
I am not sure what to think, I just want Theo to leave me alone, maybe I am being greedy but I don't want to die yet. It was so sad to hear about Jean yesterday, I think that brings it home to me about just how delicate and precious human life is.
Cancer doesn't care if you are rich, poor, young, old, famous or not, it hates everybody equally. Prof Vogl calls it a terrorist and I think he has that right.
Theo has been so good to me up to now but I want it to continue, just like every one else with cancer.

Other things going on, Kieran is complaining of back ache again, he is having some problems at school with children being physically and verbally abusive and I am not sure it it is because of this he doesn't want to go or if he genuinly has back ache. He stayed home on Monday after complaining about it and didn't say anything all day. Kieran happily played with his ball in the garden and on his scooter at the front of the house with no complaints. I had an appointment with his teacher Monday afternoon and he went back to school quite happily today.
More abuse today and now his back is worse, I have decided to take him to see my GP to get him checked over. He will be off school again and I will monitor what he does and says about his back.

The house move is halted at the moment as the house we are moving into has an estimated £1,900 worth of repairs to be done, I am disappointed with this as we were hoping to sail through this one and move in by the end of the month. The sellers say they cannot reduce the price so this one may be up the spout now as I feel I am already paying over the top for it. such a shame.

I am going to make myself a hot drink and sit with my kitten until I feel tired.
I am doing a book review "100 questions and answers about Mesothelioma". McMillan want to know if it will be suitable for UK readers as it is a USA book. I am going to make a start on reading it.
Anyone interested in doing a review, contact me at Phu_phita@hotmail.com and I will pass your details onto the relavant party.

Tuesday, 15 September 2009

Jean and Patrick Swayze.

Todays Candle is mainly for Jean in Looe.

Condolences to Jean's family, They have lost someone very special.
An inspiration to many people and especially to me.


A small tribute to Patrick Swayze who died last night.




Jean from Looe.

It is with great sadness the I heard that Jean from Looe in Cornwall, passed away.
She was a courageous, wonderful lady.
She was going to Germany but became to ill too make the journey.
Jean had liver cancer.
I went to visit her on a very rainy day in August.
She has the most gorgeous garden with a bird table.
Her husband, Ray, rang this morning to say she had passed away in her home.
such an inspirational lady who will be missed by many.
She owned a florist shop at Southway shopping centre in Plymouth.
Todays blog is dedicated to Jean and her family. Especially her 2 dogs who she adored who Ray said are lost without her.
I am sure all at Mesothelioma and me will join me in sending condolences to Ray and the rest of Jean's family. She will live forever within many of us.


Monday, 14 September 2009

Good news

It is with great pleasure that I add some good news to the site, well 2 pieces of good news actually.
Firstly, Well done to Lise's dad who has had a very good result in Germany after chemoembolisation treatment and secondly, to Jackie and Anthony on the birth of their little daughter this morning.
Jackie runs the Roger Lowe asbestos and Mesothelioma campaign.
Roger was her father and I am sure he is looking down very proudly on his new grand daughter.
Well done to both families and I hope the good news continues for you.

Sunday, 13 September 2009

Marcia, a tribute.

Helen has very kindly written a tribute to Marcia, who was very special to Helen.
They had something very special that was ended far to soon by Mesothelioma.
Thank you Helen for sharing this with us. All who log onto Meso and me know how this disease rips apart any relationship, it does not discriminate.

Tribute to Marcia Chapman 23.7.44 – 3.5.09

It is with immense sadness that I am writing this tribute to Marcia, who was a very special person in my life.
Marcia was well known, loved and respected within her church and local community as well as within many lesbian and gay organisations. She was a person of great integrity, whose life was ordered in accordance with her unshakeable Christian beliefs.

Marcia and Helen.


Her understated and unassuming personality mirrored a deep and genuine interest and concern for the needs of others and she reached out to everyone she encountered including the needy and the marginalised. Marcia was very close to her loving family and she had a wide circle of friends, both straight and gay, male and female, some of whom she’d known from her school days.

Marcia was such a warm, affectionate and loving person; thoughtful, considerate and sensitive to the feelings of others. She was also fun loving, altruistic, charitable in her thoughts, slow to anger and very forgiving There was something endearingly innocent about her and I could see in her a reflection of Christ. She was without doubt, one of the loveliest human beings I've ever had the privilege of knowing.

I first met Marcia around ‘98 through Daytime Dykes, (a London social group) but it was at a birthday bash, four years ago that our friendship began in earnest. Initially, we met up in town for meals and drinks; our friendship cemented by good wine and deep conversation. Later, we were to share many interests including the countryside, gardens, and music. An evening at Knole and a candle lit concert at Aylesford Priory evoke particularly poignant memories.
Marcia regularly attended concerts given by All Saints Chorus, a local choir of which I’m a member.

Our performances of sacred choral works met both a musical and a spiritual need in her. Marcia was also present when I was received into the Catholic Church in 2006 and despite being an Anglican, she happily accompanied me to Masses and socials organised by Quest, a gay Catholic organisation.

We were still exploring our many mutual interests when she was diagnosed with mesothelioma in December 08. What a dreadful shock that was! It was a day which I shall never forget.
Even so, I had never been convinced that she had fully recovered from the illness which had struck a year earlier, and with hindsight, Marcia seemed to know intuitively that her life expectancy was limited.

She appeared to have a list of things to be achieved and ticked off such as introducing me to her family and a subsequent trip to Paris. Sadly, she didn’t get very far down the list.

I feel enormously privileged to have been close to Marcia in recent years and especially throughout her illness which she faced with courage and emotional and spiritual strength. Despite the pain and tragedy of the situation, she was still able to laugh and enjoy the little pleasure which life had to offer her. In the hospice, when her life was fading fast, she fell in love for the last time - with Garfield, a ginger tom who spent many hours asleep on her bed!

Marcia once told me that her only ambition had been to love and be loved. Well, she certainly reached her goal in the final year of her life. She was immensely grateful for the continuing support she received via cards, letters, email and offers of practical help from the people who mattered to her and casual acquaintances alike, and she felt more loved and appreciated than at any other time in her life.

Shortly before her death, Marcia said, ‘you won’t forget me will you?’ As if! She is with me constantly which is a source of comfort in my grief. Like the many significant people in her life, I am truly grateful for the time, love and friendship I was able to share with this very special woman and in the afterlife, I know we shall meet again.

Helen Allsop

NB, All Saints Chorus (London E15) will perform a memorial concert for Marcia in the Spring

Wednesday, 9 September 2009

CT day...yuk!!

I had my CT scan in Plymouth today. I am not going to Germany this time for a check up, it is all being done in the UK and sent to the Prof.
My friend, Gina came with me and took pics of me drinking the lovely contrast....Yuk.
Pictures are to follow. I treated Gina to lunch as she very kindly picked me up, stayed with me and took me home.
I then went onto a meeting to discuss treatment, care and general subjects that are available for Mesothelioma sufferers. I wasn't surprised to hear that the attitude hasn't changed since I had my diagnosis 3 years ago. Because the main group of sufferers are men between the age of 60 to 80, funding isn't deemed as important. I questioned why myself, people like me and very fit 60 to 80 year olds were not considered worthy of help. Same old thing, it is incurable, lung cancer isn't somrthing that funding is put into as there is a stigma attached, smoking, so there fore, we will all be put in the same box and forgotten about.
Well this person and many others will kick our way out and say this is not acceptable. It was good to see my MP taking a strong interest in the subject. I think it was a very positive meeting, the only bad thing is showing the reality of what is going on inside of me. Pictures of lungs from people that didn't make it are very upsetting but I understand why it has to be done.
I also told the Dr there that the Professor had offered to bring his team to the UK as this is where his main bulk of patients for his studies will be. This has fallen on deaf ears at the moment.
I met Anne there, she lost her dear sister, Bev, to Mesothelioma in 2006 and it must be heart breaking for her to see what exactly happened to her. I think there were 3 of us in the room who had actually been affected by what happens to the patient and the way it implodes on a family.
The forces was also discussed as there is a ridiculous rule that if someone in the forces is exposed to asbestos after 1987, they can get a compensation payment. I lady had lost her dad and wasn't entitled to a payment as he can't sue HM.
This is a stupid rule as very few will be exposed to asbestos after 1987 due to no protection. The law looks after itself and hides all those insurers from the people who are entitled to something for their negligence.
I am going to listen out and see what happens with this meeting as we need something in the south west for support.

Tuesday, 8 September 2009

CT scan tomorrow.

Carolyn, Tina, Julie and I

I have got a lovely concoction to drink at 10:30 today. CT contrast dye....lovely!
No breakfast tomorrow as I need to drink more contrast fluid tomorrow an hour before the scan. My friend, Gina is coming with me, she is a sweetie.
I will get the results on 16th September and am hoping all is the same.
It is the first appointment i have had at 4:10pm. I usually have them in the morning but as the results have been so good, maybe it isn't a priority now. That is good and hope it stays that way.
I have a meeting at 1:00pm tomorrow to discuss Mesothelioma treatmnets, care and general issues surrounding patients. I will add information and notes when I come bakc.

I had a great weekend with my friends, we went to see the Everly brothers tribute at the Matchroom Suite, Plympton, Plymouth on Saturday night and slept over at my friend, Julie's.
Tina slept over as well, she has been worried about her dog, Reggie as he has some blockage which is preventing him from eating. Tina was so worried, she found out that he had swallowed a bottle top. He is going to be fine thanks goodness.

Below, The Temple Brothers as the Everly brothers. (Video)

video

Saturday, 5 September 2009

D-Day for Rich!

Well it is here, Richard's day he has been dreading. His computer has been confiscated as he still hasn't got a job.
I feel really bad about doing it but I have no other option, he is on the computer all day and all evening playing online games with his friends.
He has been out of work since he left school at 16. Since then he has had the odd job here and there and always lost it due to time keeping.
I don't want to do this to a 20 year old but he has left me no other option.

He still owes me money for the computer and as I have explained before, a landlord would take his belongings and sell them for the rent, which he hasn't paid for the last 6 weeks.
It is a hard lesson that needs to be learnt. Siobhan is at college and next year will be doing her bachelors degree. Kieran is at school and will be doing all his exams to achieve something when he leaves school.
Rich has done nothing to support himself, there is no reason he can't get a job. I love him so much and know that he is a wonderful son, I have explained that as I may have to cut back my hours, he needs to support himself.
We have the survey being done on the new house next week so i think we will be moving in within the next few weeks....so exciting!!!

Thursday, 3 September 2009

Couple of good days.



I went to the auariam with friends today and got very tired come the afternoon. I think it was the see air!
Kieran is back to school on Monday so seeing his friends was good for him.
We had a lovely day at the aquarium but had a terrible meal. The food was cold, My friend, Carolyn was overcharged and I was given my change on my salad!!! The cashier actually put a £ coin and a £5 note on my salad!!!
We did leave a lovely letter of complaint. I then came home to organise a wine tasting event which had been given to me by my friends for my 50th birthday and they are fully booked! I have to pay another £15 to keep the voucher open until next year, after explaining that I have terminal cancer and the wine tasting was the only event in Devon, I was told that i couldn't even have the fee waived.
I shall be righting a letter of complaint about that to as I informed the woman on the phone that I didn't know if i would still be hear next May. Stupid company now have the money and seem like they really don't care if the recipient of the gift goes or not.

Tuesday, 1 September 2009

Restless night last night


My mind was working over time last night. The pain has come back in my left side, this has made me feel the Theo may be returning. I don't think he is but it doesn't stop my mind having wild thoughts. I have the CT scan next week and need to contact my oncologist to arrange an appointment for results.
I am frightened at the moment as things have been so good.

Not knowing how the treatment progresses is a hard one as I was the first person I know to have it. I am hoping that it is just fluid built up from the pneumonia as the first time I had pneumonia I developed this pain although it was a lot worse back in 1994. If it is fluid, it may well sort itself out. The time of year doesn't help either as my dad's anniversary was last week and that is always a constant reminder of how fragile life really is.
I am hoping that when we move to the new house, it will be a new start and I will have a lot of years ahead of me.
I am still having my challenges as it keeps me focused. The next one is Christmas again and then it will be Richard's 21st Birthday.
I intend to reach all my challenges.