Monday, 31 August 2009

Theo makes himself known?

I have had a pain in my back for the past couple of days which was reminiscent of the pain I had before I had the fluid removed in 2006. I am hoping that Theo hasn't returned and maybe it is due to the recent out of pneumonia I have had.
I am not back to work until 21st and that is not going to be a return date if I am not back up to my usual healthy self. I am a little concerned in going back as my boss has said I will be on a new team where myself and my colleague will be the more knowledgeable about the call queue, that is worrying me as I don't know what i am doing as I have only just gone on to it recently.
I am not happy with going back to something and people are relying on me for answers I cannot give them.
I do feel that the stress element had pulled me down and the virus took advantage of that.
Home life is good, Rich still doesn't have a job and now has 5 days to get one otherwise his computer is being packed away until he has one.
Kieran is back to school on 7th September and this will give us an opportunity to pack away and get ready for the move to the new house.
We are all looking forward to it.
Hopefully it will be a new start for all of us.

Saturday, 29 August 2009

Good day today

Siobhan and I went into town today and had what we call a "charity day". We love going into charity shops and finding bargains. I had a call from Kieran's dad to say he wanted to come home as he has a friend down who has 2 boys who are arguing all the time. Kieran can't cope with it and asked to come home. I said I was out with Siobhan and would pick him up when we had finished.
We met him in town when we had finished. He played outside with his friends when we got home, dominoe pizza messed up the childrens pizza order so Siobhan didn't get hers till late.
After she had her pizza, we went shopping and Siobhan spotted a pokeball. She has got back into pokemon and was so pleased to have the ball, when we got back to the car she opened it and found her very favourite pokemon inside. Her words were "this is the best day of my life"....she was so happy and I was so pleased to be a part of it. It is showing me that the children are now a lot more relaxed and happier than they were.
She also said that she was thinking of going to the graduation next year as parents expect it. She had said she didn't want to do the ceremony as it wasn't her style. She has changed so much and I have told her, it is entirly her choice if she does the graduation ceremony, I would love her to do it but it has to be up to her in the end.
Rich still hasn't got a job, he has been issued with a warning now, 1 week and the computer is being packed away if he hasn't got a job. I don't feel I should have to do this as he is 20 years old but I feel he isn't leaving me any options.
With me cutting back my hours, he needs to support himself now. We shall see what happens.
I do love my babies, they are my treasures.

Friday, 28 August 2009

New house , new start

Well....I have been recuperating after by bout of pneumonia and am starting to get back to the place I was at before.
The children and I went to the cemetery on Wednesday to remember my lovely dad and their grandad. He has now been gone 3 years although it doesn't feel he has left, if that sounds right.
I went to lunch with my friends Julie and Tina today and went to see another house at 3pm today which is in our area.
We have made an offer and it has been accepted. It is lovely, even has a conservatory which is what i was going to add on any way. We are all very happy with it. We will be moving in within 4-6 weeks and hopefully won't get any hassle with illness this time. The estate agents with the other house were getting silly. They had asked me to call them to tell them what my Dr said as they wanted the sale. They were so pushy that I decided to pull out and then the house we looked at came along.
Kieran is happy as he will still be able to see his friends.
Kieran is with his dad for a few days, one more week and it will be back to school. I have a CT scan on 9th September and the details will be sent to Prof Vogl. I am really hoping there is no change with the tumour. The only change I want is for Theo to shrink again. If he doesn't shrink, staying the same will be fine. I just don't want him to grow.
All the depression will start soon, all the misery and worry. I want the scan and the appointment with my oncologist out of the way so I can concentrate on the new chapter in my life.

Wednesday, 26 August 2009

Remembering my wonderful dad.

It has been 3 years today that my lovely dad, Philip Northmore, fell asleep.
I still miss him very much and love him as much now as I did when he was here on earth. He was a victim of asbestos and it still makes me abgry that he had to leave this planet too early. I have always felt he is close to me, especially after all the things that happened to me last year. Not a day goes by when I don't think of him. The children and i will visit his plaque today and lay some flowers in memory of him. I always carry him within me where ever I go. I sometimes even find my self talking to him. 

Dad,
Just to let you know that you are forever with us and we still miss you so much. It still makes me angry that you had to leave when you did. I know you have been beside me through my journey and this has been a great boost to finding treatments that I didn't know existed. 
The children and I miss you very much and love you even more. 
I can't believe it is 3 years, time passes so quickly but it doesn't make missing you any easier. 
We will be visiting the garden today and remember you as you were, happy, active, and full of fun. Such a waste of and wonderful person.
We miss you and you are a very special dad and Grandad.
Debbie, Siobhan, Richard and Kieran x x x 


Tuesday, 25 August 2009

Dawn and Julie's dad


I met Dawn and Julie on Facebook and they were very keen for their dad, Les, to try chemoembolisation.
It is with sadness that I have to write that he didn't survive it. He went to sleep on Sunday after having 3 treatments of chemoembolisation.

I am not sure if it had shrunk the tumour at all but it is such a shame he didn't get the same miracle.

Dawn writes :

"It appears that we are not to be blessed with the same miracle. My Dad passed away yesterday morning. He was a wonderful, hard working family man who really tried to live. He had 3 visits with Prof. Vogl and we really thought we were on the up but alas it was not to be. That nasty man made cancer drained the life from him. It still feels like a bad dream that I am desperately trying to wake up from"


Condolences to Dawn, Julie and family, Les will always be remembered by all at Meso and me. 
I am sure I can say on behalf of all at Mesothelioma and me that Dawn and Julie will have the support from many others who have gone through the same thing.


Friday, 21 August 2009

Keith in Truro.

It is with great sadness that I heard Keith from Truro had passed away.

He fell asleep in the early hours of this morning.

I went to visit him a few months ago, just after he was diagnosed and he seemed very positive about the treatment he was getting.

His sister, Wendy and his wife, Jill, have been a great strength to him. 

Todays blog will be dedicated to Keith and his family, he will stand on the shoulders of others fighting for a cure. 

Clinical trial at Papworth Hospital.

Thanks again to Wendi at My Meso . org for the info below.


clinical trial for patients with malignant mesothelioma is currently recruiting participants. The trial is sponsored by Papworth Hospital in the UK, although it is open to any mesothelioma patient that meets the criteria. This study will evaluate video-assisted surgery to see how well it works compared with talc pleurodesis in treating patients with malignant mesothelioma.

According to information on ClinicalTrials.gov, a service of the U.S. National Institutes of Health, this is a randomized phase III trial. Video-assisted surgery removes part of the tissue layer covering the inside of the chest cavity, which researchers think may be effective in treating pleural effusion and cause less damage to normal tissue. Talc pleurodesis may keep fluid from building up in the chest cavity. It is not known at this time which thereapy is more effective.

The primary objective of this study, as stated in the project outline, is to compare the effectiveness of these two modes of treatment in terms of 1-year survival, in patients with suspected or proven malignant mesothelioma.

Secondary goals of the study include comparing the control of pleural effusion, comparing procedure-related complications, comparing symptoms and quality of life of these patients at 3, 6 and 12 months after treatment, comparing the length of hospital stay, the exercise tolerance level of these patients at 3, 6 and 12 months after treatment, and to determine the cost to the health service, in terms of resources used for procedures, hospital bed usage and cost of primary and secondary care over 12 months.

Recruiting locations in the UK are Basildon University Hospital, Gelnfield Hospital (Leicester), Guy’s Hospital (London), Papworth Hospital (Cambridge) and Royal Hallamshire Hospital (Sheffield). Principal investigator for the study is Robert Winter, MD, Papworth Hospital.

This study is identified in the U.S. at clinicaltrials.gov by ID number NCT00821860.

For contact and recruiting information, visit the Clinical Trials information page athttp://clinicaltrials.gov/ct2/show/study/NCT00821860.

Thursday, 20 August 2009

Getting better every day.

Yesterday was a tiring day. I have been looked after by Siobhan, Rich and Kieran. Kieran's bread and butter is the best!!!
I had a visit from Lyn, the St Lukes cancer official to discuss going onto 16 hours a week and going back on to family tax credits. 
I am going back to the Dr's on Monday as my sick note runs out and I can't see me going back to work quite yet. I made a call to the estate agents and let them know how I felt about the 2nd September settlement date. This is going to be impossible at the moment as I feel so wiped out and not able to get much done at the moment.
After speaking to my solicitor today, she has advised me to get my health back up to my usual standard first and they will have to change the date, if not, they will have to look for another buyer. I have decided my health comes first. 
I am venturing out into town with Kieran and Siobhan tomorrow as Siobhan's friend has had a baby and we are getting him a present. I also want to get an outfit for Saturday as I have been invited to a fancy dress party If I am not too tired, I will be going.
One thing that is absolutely wonderful is that through all this illness, it doesn't look like Theo has returned. I am hoping that is what I will be told in September.

Tuesday, 18 August 2009

Back home

I am home at last after 6 days of being in hospital. 
It has been very stressful at times as I was put on a ward that was for heart op patients and was, quite, literally, forgotten about. I had to ring the buzzer for everything including my anti biotics and my blood pressure, oxygen and general obs. The food hasn't changed, it is still bad. Jamie Oliver needs to do a hospital dinners programme.
I am so tired today that I just want to flake out on the sofa.
Came home to a letter from the sellers of the house we have been looking at and they want to have it all finalised by 2nd September. I advised the estate agents out of courtesy rather than wait for the solicitor to do it and was met with, how long will it take you to get better as the sellers want to complete.
I asked if she has a crystal ball and as I hadn't had the survey yet, was limited with what I could say.
I think my health is foremost and the house will be a very far away second.
I really don't feel up to packing at the moment. There is so much to do and I don't know how I am going to do it.

My friend, Jeanette took my sick note to work as the ex found it difficult to do!!!

(Photo courtesy of Julie)

Friday, 14 August 2009

No more face masks !

It has been an eventful couple of days. I was admitted to hospital on Wednesday as I was having severe breathing difficulties. I was sat in my front room at around 10pm when I had a drink of water. I brought that up and found I was having trouble breathing. I called Siobhan on her mobile as she was in bed and she came rushing down and called 999. We left the house and went in an ambulance to the local hospital. We got there about 10.30 and stayed in a&e till around 2am. Siobhan went home and I was transferred to an isolation room with suspected swine flu. I was then transferred to another ward at 2.30 pm. As there where only 3 nurses on duty I was left un-noticed till 4pm. the whole day was like that.

I saw a chest doctor (Dr H) this morning and he has confirmed I have pneumonia and not swine flu as symptoms have been going on for over a week and I was more like a pneumonia patient. He removed his face mask to the phrase "I think we can stop this silly nonsense".  I will be staying in hospital for another 48 hours for observation.

Wednesday, 12 August 2009

Chest infection now.

I have been coughing and vomiting all morning and didn't know what to do.
I called my lovely friend Tina and she has been brilliant. She arranged for the GP to pay a visit and pick up my scripts. I have been told that I have a chest infection due to the virus I have had and have been given some antibiotics and have to continue with the Tamiflu.  I have also been given some anti-sickness pills to combat the sickness as I have to eat to take the pills.
I am going back to the GP surgery next week for a check up.
I am coughing and weeing still and feel like I smell terrible. No matter what I do it still comes out when I cough. Will have to work on those pelvic floors.
Hopefully the pills will start working soon. I had the numb feeling in my hands/arms again and my breathing got better. I think the human body is amazing how it copes with everything.
My ex is taking my sick note to work tomorrow. I have been offered a change of shift. 8-1:50pm or 4-10pm. I am thinking of taking the later as it will be easier with Kieran.



Asthma

It is 2:25am and i am feeling tight at the moment. No not money wise...... i have a little problem with my asthma. I have done the inhaler and will monitor the situation. 
I am feeling so tired, I don't know why as I have been sleeping most of the day as well.
Damn Swine Flu!!!!
I also have an abscess that I cannot sort out yet because of the flu. I can't go out anywhere.
I have never had a abscess before, it isn't painful, just there, not really doing anything. It is from a filling i had done a while back. I did go back to the dentist as I felt that things weren't quite right after the filling but was assured it was not an abscess but I now realise my concerns were right.

I have done my emergency inhaler and feel a little better now. I have the strangest feeling going on, floppy arms and hands although I am writing this and they are not floppy.,,, strange!!!
I am going back to bed and will see how things progress tomorrow.

Tuesday, 11 August 2009

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

I was up at 3:ooam this morning coughing like a navvy on 80 a day!
I am feeling so tired which I think is due to the Tamiflu. There is a lot of controversy about the drug as it is felt that it will be like antibiotics and will stop working if it is giving out willy nilly.
It is also felt that some people are being given it when they don't really need it and misdiagnosis.

I have rang work this morning to let my manager know about the swine flu. He wanted to know if it had been officially diagnosed. I haven't seen a doctor face to face so couldn't tell him if it was official but that I had the Tamiflu.

Kieran is staying with his dad for 3 days which will be helpful. The children seem to be ok at the moment. Rich has been sneezing a little but seems to be ok at the moment. Kieran was upset that he couldn't go to holiday club. He was looking forward to it but had to stay away as he may pass it on the the children at the club. It is annoying just how this disease has impacted lives.  I am not sure what else could have been done to prevent it. 

Please call the pandemic helpline (NHS Direct) on 0800 1513100 or contact NHS direct and do the online diagnosis. 
If the are any signs of sore throat, sneezing, coughing and high fever, call the swine flu line immediately. If there are further complications, call your local GP surgery or 999.
Don't wait to see if it passes. Anyone with Mesothelioma or any asbestos related illness is at risk of Bronchitis or Pneumonia  more than a healthy individual.

Sunday, 9 August 2009

Tired today

                                  Tina and I in our hats, we were the only ones wearing them.
                                           My lovely boys, richard and Kieran
                                  Tina and I in our hats again, I thought we looked sensational.
                              My favourite picture of the day. Me with my beautiful babies.
                                             The happy couple Adam and Kumi.
                                             Kieran and I arriving at the church
                  my handsome boys, Rich and Kieran. I am so proud of Richard, he was best man.


I feel a lot better today. Yesterday was wonderful, I was sad to not go to the evening do but I would never have managed it. I was a little worried last night as I had a little bit of blood in the muck through coughing.
All is ok today and is back to the normal awful colour. I feel so tired today so am having a duvet day. I have set up home on the sofa and the children are taking care of me. Kieran made me a piece of bread and butter with plenty of hugs.
I hope the children manage to avoid it as it isn't pleasant.
I am adding some pictures of the wedding as I was ok in the afternoon, my temperature went up last night, 38.5, at about 6:00pm but that seems to have settled down now. 

Saturday, 8 August 2009

Tina's wedding.

I have been feeling really well today and felt my cold was passing, that was until anout 6:00pm. I haven't stopped coughing and have a headache, fever of 38.5 at the moment, breatless and very very frightened about what may come next. Hopefully my mistletoe will conquer most of it. The wedding was beautiful and Kumi looked stunning. I am back to the house and let the boys go back as they have no symptoms and I take it that they won't be infectious till they start coughing and sneezing. I called the NHS helpline and got through to a lovely lad who was very new but very pleasant. I don't think he nderstood my illness. I then called my Locum who said they would be ready tonight. My friend Jeanette is picking it up for me. she is a real star, Gina my friend said she would pick it up but she has had cancer and I don't want to pass it to her.
I am not going back to work until this has passed. Such a let down. I have removed any comments about work as I don't want any trouble. Will add some pics of the wedding later.

Monday, 3 August 2009

                                            These are a couple of pictures from Jean's garden. 

Film with Kieran and then off to Looe.


Kieran and I went to see Ice age 3 Dawn of the dinosaurs (3D) with  his friend and his friends mum. We really enjoyed it. We had 3D glasses I was going to take Kieran to Looe with me to meet Jean, a lady with liver cancer, but he decided he didn't want to go and Rich volunteered to look after him.
I went off in my little car, Halo, to meet Jean. she has a wonderful house in Looe, Cornwall. She is contemplating going to Germany as she has heard how well Steph has got on. She has nothing else on offer here. Jean has a beautiful house and garden. It looks out over the sea although we didn't see much today as it was very misty due to the drizzle. I was once again proud of myself for driving there as i don't venture out on long journeys.
I am going to book a wine tasting in Totnes which was a present my friends had got me for my 50th. I had a lot of things to choose from but the wine tasting was the only event in the west country. every thing else was in London and Manchester and it is difficult to arrange things in the school holidays with Kieran. Now i have to find some one to share it with. i am going to take the train there as I will be wine tasting and if I drive, I don't want to drink.
Tomorrow Tina has the wedding rehearsal. My son, Richard, is best man. I am sure he will make a great job of it.

Saturday, 1 August 2009

Last day at work and 3 days off.

Yesterday was a stressful day. The call queue is horrendous at the moment. It is so busy and doesn't give us much breathing space. I am going to overcome it even though I feel a little isolated at times. All my lunch breaks and tea breaks are on my own which sometimes is demoralising.
After work I went out with my lovely friend, Tina, we went to see Sham 69 which was great. A good end to a stressful day. I feel like I want to give up work and enjoy the life I have had back. That isn't going to be possible as Siobhan is still at college, Rich still doesn't have a job, Kieran is only 12 and doesn't really affect whether I work or not.
I am not claiming family tax credit because, like everyone else claiming it in this country, they insist that I am entitled to money and the year after they have over paid me. I have decided not to have it as it winds me up so much.
I know I should get it but I can't seem to get an honest answers from the department. They insist that yes the payment is right and then ask for my P60 the year after and then it is all wrong.
The last straw came last year when I got back from my German trip and a letter told me I was entitled to £2,500 and I had to pay back £1,600 for the previous year????
Confusing, and these people are in the tax office!!!
Well enough moaning today...I am off to work and then 3 days off.