Wednesday, 30 May 2012

South West Mesothelioma Support Group meeting

I met up with Richard from the national asbestos helpline last night. We had a bite to eat in a Thai Restaurant which is in the Barbican Theatre, Plymouth. It was tucked away in one of the side street. This was my first Thai experience.
I showed Richard around the Hoe, it was such a beautiful evening.
Today was the support group meeting, it was very well attended again. We discussed action mesothelioma day which is on 6th July. I won't be in Plymouth for that one as I have been asked to talk at the Hampshire groups meeting (HASAG) Lynn and Diane are lovely girls, sisters who set up the group in memory of their father.
Richard will be somewhere else, doing media and getting asbestos and mesothelioma talked about.
At the support group is a lovely man called George, The colonel, He was talking to Richard about me getting a summer house/workshop for Siobhan and told me about a real bargain at B and Q. After Richard had dropped me home, Siobhan, David and I went off to B and Q to take a look. It was perfect, just the right size for Siobhan and her new business.
Tomorrow I am going up to the mustard tree agin to help out our lovely specialist nurse with some admin jobs.
 Trying my first taste of Thai.
 Siobhan's new workshop.

Kieran made a key holder in school, it is so lovely, I love it and it has pride of place by our door. Well done Kieran x x

 The South West Mesothelioma Support Group. Some of the people who attend, sharing the ADAO award.
 George, the Colonel
Kate our specialist nurse.

The weekend will be fun as I will be going away to Looe for the night. Should be fabulous : )

Monday, 28 May 2012

Great night last night.

We had a brilliant night last night. Kieran's dad had helped organise a quiz night to raise funds for cancer research. Myself, Kieran, my sister Wendy, her son Chris and his girlfriend, Caroline, made up team Marvel. We had a fun time trying to fathom out the questions and resigned ourselves to the fact that we were not going to win but as there was a losers trophy, we decided to aim for that. Well.... no contest, we did a really bad job and lost. Excellent, Kieran went up to be presented with our trophy for being the bottom of the score board, there was a time when we did worry that our score was getting better and we wouldn't get the wooden spoon trophy, we need not have worried. We showed off our showed off our winning prize, we were all so proud of it.
We even played our joker to get double scores and still lost, it was great fun, we are going to share the trophy, I think it will look great next to my ADAO award.
I went into town today to meet my friend, Carolyn, for a coffee, I haven't seen her for a couple of weeks so it was great to have a catch up. We had a Devon cream tea with a coffee, yummy and then off to Thortons for a lovely drink.

The  South West mesothelioma support group meeting is on Wednesday, it will be good to catch up with everyone. I have surprised myself with how well I feel. After a bad start to the chemo I seem to have come out of it relatively unscathed. Apart from the rash, which is manageable, All is good. I have been putting an Aloe Vera cooling gel on it. It is like an after sun preparation but works really well, I was quite itchy in the night, probably because it is hot as well, I put that on and it really did help. I am also taking an anti histamine when I need to. Next week I will be having the second round of chemo. I don't want the cisplatin again due to having an allergy to it and hope I can change to carboplatin, I shall see what Dr D says. I will take my mistletoe tonight, I think this is why I feel so well, I would like to think so.
 Even playing our joker didn't up our score.

He  did so well with his 12 hour music marathon, so far he has raised £100. Well done Kieran x x
 Kieran proudly showing off our winning losers trophy, he was presented with it on behalf of Team Marvel : )
 My sister Wendy with our grand losers prize.
 Caroline looks very proud of the trophy, she is the first to take it home and display it.
 Me with the wonderful losers spoon.
 My nephew Chris, looking very happy with his losing achievements.
 Kieran with the trophy we worked hard at to earn, Well we didn't have to work to hard : )

Cream tea in town today, First trip in town since I had chemo 2 weeks ago.

Sunday, 27 May 2012

Lovely weekend.

Yesterday was another beautifully sunny day. Kieran stayed at his dads, he did a 12 hour music marathon on his radio channel. He made £60 for cancer research which was wonderful. Well done Kieran : )

In the afternoon I arranged to meet my friend, Mandy, at a local tabletop sale. Typical me, got to the church hall, thought this is quiet, looked at my texts... wrong one!!!..... Silly me
So Siobhan, David and I turned the car round and went to the right one, All was underway when we got there, the palce was jam packed with people, We couldn't get near the tables. We were just looking around when, crash, a teapot was smashed, this was the second one to go.... ooopps!!
We decided that there wasn't a lot on offer so decided to leave. We had paid 20p to get in and were about to leave when Siobhan spotted there was more going on down stairs. So Mandy and I turned around and came back in, Bouncer granny on the door bellowed at us "it's 20p entrance fee, 20p". Mandy turned to her and said we had already paid, an apologetic lady answered back. We carried on down the stairs where there were a lot of toys, I know what Siobhan was looking for, my little ponies.

She wasn't disappointed, she found a box full of them. Well done Siobhan, Mandy picked up a few bits for her grand daughter and we left. We went for a cuppa at the local garden centre, Siobhan and David wanted milk shake while Mandy and I had a tea and a coffee. A banana and a strawberry milk shake was ordered, what arrived was 1 glass with banana and strawberry milk shake??? 1 very confused young girl who had already to an age to make that one. We got our cuppas and went and sat down, the milk shakes would be brought over. The girls behind the counter were very young and looked like new starters, they took such a long time to do anything, such a shame they didn't have supervision as it must have been very stressful for them.
Today the weather changed completely, it has rained all night. Where is the sunshine?
I took Kieran to the shop to get a pizza base mix as he said he wanted to make pizza for his lunch. He did well, he mixed it all, kneaded it, and let it rise, well warm place for the dough... yes.. the oven, no Kieran, not yet : )
He made it and baked it while I dealt with an emergency dash to the vets.

Basil, our neighbourhood stray, came in. I heard Siobhan say hello to him and then let out a shocked cry that he was dragging his back leg. Poor thing had a really swollen paw, he struggled along the passage way and tried to go up stairs. I rang the vets right away and was told to ring the local RSPCA who told me the vets should be dealing with it. All because he is a stray. I told them if all this fuss would stop I would say he was my cat, poor thing was suffering. Siobhan and David went down to the house where they thought Basil lived, while I was on the phone Basil was in the cat box and was starting to lay down, Kieran said his breathing was sounding funny, he was worried. I told the people on the phone what was happening and said I would bring him down right away.
I thought he may have been knocked by a car as he couldn't put weight on his leg. I got him in the car and drove to the vets. I went in and was taken to a side room to wait for the vet. Siobhan called me while I was waiting, It turns out that the house Siobhan and David went to was where he lived. He had been missing for about 18 months, his name is Diego.
The vet came in and looked Basil over, she said that he had been bitten, he had a very high temperature but his colour was good. Poor thing, we hadn't seen him at all yesterday which was unusual as we see him every day. I think he has been laying low since he was injured and in this heat was probably dehydrated as well.
He was given anti biotics and taken through to the kennels in the vets and I made my way home.
The lady who owns him came over later and said he was now home and resting, she was going to keep him in for a few days but was sure he would wander again. I have told her that if she was thinking of rehoming him, we would take him as he seems to like it at our house.
We shall see what happens, poor Basil, so glad he is safe and had not got hit by a car.

Saturday, 26 May 2012

Itchy, itchy, itchy!!!

The last 2 days have been uncomfortable, I thought I had sunburn and was curious as to why as I hadn't really sat out in the sun. I put aloe vera on which seemed to calm it. My neck and chest are so itchy. I have since found out after talking to my warrior friends that it could be alimta causing it.
I took an anti histamine which seemed to work last night. I will be driving today so don't want to take another one as they make me so sleepy.

I am imagining that Theo is not happy and is fighting back. The itching, the allergy to cispaltin, is this him trying to kick out the stuff that will knock his back side out into orbit? I hope so, I hope he is not happy and that he decides I have made him so uncomfortable that he wants to move out. Come on you slob of a man, out, out, out!!!

Theo is getting well known around the world, he was mentioned in a blog yesterday. He may become one of the most hated people in the world. I made a deal with him when we first met that I wouldn't blast him with chemo if he didn't grow, he didn't keep to his part of it so, out ya go!!! Take a gap year, do something put stop encroaching on my territory, and in my best West Country accent, GET OFF OF MOI LAAANNDDD!!!!!

Friday, 25 May 2012

On the up.

Today has been very restful, it has been so hot that I haven't ventured out. I was a bit wobbly this morning so didn't go to Kieran's assembly which I would love to have done. I stayed home and got the washing sorted out. Just carrying the basket upstairs was enough to make me feel weak. I did it though and was proud of that.
This afternoon I had my lunch and laid on the sofa, I went out like a light, slept for about an hour. I felt so much better when I woke up. What a picture, Stork and Amber kitten and me all sparked out on sofas and chairs!
I am going to get a little more motivated tomorrow, I am meeting my friend, Mandy, at a table top sale, we are going to have a rummage around. Siobhan and David are coming along too, should be fun.
Kieran is doing his music marathon tomorrow in aid of cancer research, he is doing so well, he has around £80 so far for doing the relay next week and will hopefully raise some more with his marathon. He is playing 150 songs of the millennium staring at 12 pm and finishing at 12 am, it will be a long day for him and I will be listening in. I have added the links for donating and for requesting a song as it may not take him 12 hours to get through the 150 songs.  (Kieran's radio) (Fund raising page)

Copy and paste the links for more information.

I am so proud of Kieran and what he has done to raise money, well done Bean.

I also have to say a huge well done to my daughter, Siobhan who has got a grant from the Princes trust to start her own business. I am very proud of you Siobhan, I am sure you will make it a success. 
Siobhan will be printing t-shirts, bags, cards and other merchandise on an online shop.

The chemotherapy treatment was harsh to start with but has since got a lot better, I haven't lost my appetite and have felt tired, not too bad considering. I do wonder if the mistletoe has something to do with it, I would like to think so.

More sunshine!!

The weather has been glorious this week and today is no different, the sun is shining so strongly outside. Kieran has gone off to school, sun glasses and a hay fever tablet for his journey. He and his class are doing the assembly at school this morning, I am hoping to go but I have told him I need to know how I feel first.
I took a while to get on top yesterday. I went shopping with Siobhan and David and felt like my body was a lead weight, my energy is zapped. I really want to go to his assembly but I know I have to be sensible about things as well.
I picked up my sick note yesterday afternoon and my GP has signed me off for a month, I was so disappointed as I wanted to get back to work before the next cycle of chemo. I have to listen to my body though and take my time, it has had a real bashing, especially with the allergy.
I didn't go to my friend Chrissy's last night after all. I was so tired and didn't want to drive out and back feeling wobbly so I turned it down. There will be other times I am sure.

My system has been upside down since the first cycle, I sound like Rab C Nesbitt after a curry and a crate of ale, I am hiccuping and belching uncontrollably which is embarrassing when I am out and about in company, The bottom burps, as Mavis calls them, aren't as bad but still a nuisance, It must be something all cancer patients experience unless I am out there on my own, how do my friends put up with me : )

Thursday, 24 May 2012

Another sunny day.

The weather is glorious outside. Kieran has gone off to school, poor thing is full of hay fever but he seems to be coping well. Siobhan has hay fever too, no fun for them when the sun comes out.
got busy yesterday, took my sick note to work, I have to get another one as it ran out today. Off to work later with the next one, I popped into Darren's garage as my little Halo is having a problem. Darren thinks she needs a new petrol injector and will get one next week to fit it. While your there Darren, I can think of a few parts I could do with. Talking to the lovely Mavis this morning, she said she needs a new body, I do too so we would love to find a new body shop!!

I think I may have done a little too much as this morning I am feeling a little delicate. I am going to slowly get myself together and go to get the shopping with Siobhan and David.
If I am feeling up to it I will go round to my friend Chrissy's for tea. Will be good to get out and see my friends.
Kieran has an assembly tomorrow, I am hoping that I feel well enough to go. I must admit though that I feel so much better than I did the beginning of the week. I will take my mistletoe tonight as I am sure that is helping with the recovery and symptoms. In 2 weeks time I will be putting myself through it all over again, July is a month I want to have for me as I want to see Richard in Ireland. It will be my birthday and I want to be with my most treasured family, my babies. I will have a chat with my oncologist and see what he feels.
I am hoping to go back to work next week, I have a good team and managers who support me and I do enjoy seeing my friends, I miss them.

I am sending love and support to a lovely lady in Plymouth who lost her dad last night.  Condolences to you and your family x x x x

Wednesday, 23 May 2012

Feeling more like me.

I feel so much better this morning, my head is still a little woozy but I hope that clears as I would like to go out today if I can. Poor Kieran is full of hayfever, same as Siobhan, I do feel for them as they sneeze and have itchy eyes in the beautiful weather.
He went off to school in his sun glasses and radio phones in his ear, looking the cool dude that he is.
I need to try and get motivated today, it has been a really rough couple of days. Siobhan has been wonderful, making me meals and drinks. I have felt so useless and want to get back to where I was. I can't believe I am going to put myself through this all again in a couple of weeks. I don't want to have the cisplatin again, the allergy knocked me back as well as the side affects. Onwards and upwards me thinks
: )
I wasn't going to get too graphic but as this is a diary of how I felt  I had to add it. I have been bunged up for 2 days, the chemo causes constipation. I had some movicol early this morning. This is a drink that helps shift stubborn stuff, I will call it stuff : ) Well, Kieran gets up for school, has his breakfast and goes into the bathroom to get dressed. Why is it that my colon decides that this time will be when I need to go!!! Any way, no accidents, just had to hold on till Kieran was done and being Kieran, he didn't rush, He eventually came out and I belted in there. Apologies if it is too graphic, this is life with cancer. I feel much better now and hope to get out in the sunshine.

After speaking to my lovely friend, Mavis Nye on facebook, I think I can get my sorry backside up and out on this beautiful day. She is such a shining light. As she said, her body has to catch up. I know the feeling, I feel like my mind is willing but the body is still in bed. My hands are a little tingly, numb. All the things that go along with chemo, makes me feel so old and useless but I look at Mavis and how her spirit has lifted all of us. Thank you Mavis x x x Have a wonderful day my friend x x

Tuesday, 22 May 2012

Crawling out of my hole.

I don't like this feeling but know I have to go throught it if I have any chance of slapping Theo's face and getting more of my life back. I took some movicol last night which is for constipation. Everything seems to shut down, I hate chemo. This makes me appreciate just what people g through on chemo and how easy I had it when I went to Germany. I would manage to carry on and have a life, just tired for a couple of days, but this has really knoocked me for 6. Siobhan has done some shopping today and has made me meals, my friend Chrissy brought in some cauliflower cheese which was lovely. Kieran has done his little bit too, helping by emptying the dish washer and doing his own tea last night. He has a pizza from the freezer, he put it in the oven, switched on and put his timer on his phone. Well done Bean : )
I am hoping that tomorrow I can get back to life again, my head is all muggy so can't drive, silly trying to. I have to sort out the car as she wouldn't pull away last week. Managed to get her home though. I am hoping the sick note will be in work soon, my boos rang up yesterday, I hate relying on people as I am so used to doing things for myself.
It is a beautiful day today, I sat in the garden for a while on our swinging chair which was very relaxing.
Hurry up and go you chemo side affects!!!

Monday, 21 May 2012

Just got up.

It's 8:21 am and I have just dragged my poor sorry back side out of bed. Still feeling tired but better than the last couple of days. It feels like the nausea has kicked in, yuk!!
Kieran just stirring, he says he has a sore throat, he mentioned it n Friday too but over the weekend no mention at all. I am hoping that his dad will take him to the Dr's to get checked out, I think he is fine but I am just mum aren't I.
I am sure he will be fine at school. It's at times like this I miss not having a partner who can help out and knows what needs to be done. At the moment I couldn't give a toss about anything, I want to get this feeling out of the way and get my old self back again. Damn chemo!!!

Sunday, 20 May 2012

Cauliflower cheese for tea.

My friend, Chrissy, came over to see me last night. We had a chat and a curry and it was so good to see her. Thank you so much for the flowers Chrissy.
I had a good nights sleep last night. I got up this morning feeling like I haven't slept at all. I am going to have another restful day today, I don't really have much choice. I feel completely different to the person I was on Thursday. I was active, mobile and well. Today I feel like I have aged 45 years. My breathing is a little better, still tight. I got myself down stairs and fad the cats, fussy things. I got them some oh so fishy cat food, not your average cat food, noses turned up. Not even putting down their favourite biscuits with them would encourage them to eat it. So, spoilt cats, back to their one they like. They are happy now, had breakfast and gone out for a wander. Kieran hasn't got up yet. He made flap jacks yesterday. Chrissy and I had one each with a cup of tea yesterday and they were delicious. He has decided he is going to make ginger bread men today, Siobhan has been helping him. I think he enjoys going to the shop on his own and buying his ingredients. He will be doing his 12 hour music marathon soon. He loves his radio DJ days so it will be a long one. He has decided to do the 150 songs of the millennium. I am sure he will do well and raise money for cancer research.
I am going to sign off and get a coffee and park my backside for the day. Thank you every one for all your good wishes. I do appreciate it : )

Saturday, 19 May 2012

Very tired day.

Yesterday I spent the day sleeping. I was so tired but managed to potter about and do a few things. Kieran went off to school and Siobhan went out to a meeting so it was me and the kitties asleep all day.
My chest was a little tight throughout the day, nothing major so I just went along with it.
Everything was fine, I had an early night, put the tv on in my room and relaxed. I eventually dozed off at around 10 pm and slept until 3:30 am.I woke up to go to the bathroom and on the way back to bed was getting very tight chested. I was sure this was the cisplatin allergy as it felt the same. I thought a bought calling the out of hours surgery but I know I have to wait for a call back and was feeling that this was quite urgent. I dialled 999 and gave all my details and symptoms. When I put the phone down I knocked on siobhan's door to let her know what was going on. She turned the lights on and opened the door ready for the paramedic. I made my way down stairs and by the time i got there the breathlessness really took hold. Siobhan rang 999 again just to let them know it had got worse, with that the paramedic arrived in a rapid personae car. He took my stats and was worried about my heart rate as it was low. My oxygen says we're fine. I made my way to the car and the paramedic took me to casualty. This was about 4:00am and I was eventually seen around 6:00 am. The dr I saw was lovely, she agreed with me that it sounded like the allergy, she got me a piriton tablet and it seemed to do the trick right away. She was worried about the low heart rate but this has been mentioned before, one of my gps told me i had the heart of an athlete because they always have a slow heart rate. It was lower than normal but seems to have righted itself.I got myself a taxi, what a sight, me in my Jamie's and dressing gown at 6: 30 am in the morning coming into my house! First thing I did, hit the pillow and I was asleep. Hoping for a quiet day today x

Thursday, 17 May 2012

A fun day at hospital

We were all up early today to go to the hospital for my first cycle of chemo.
Kieran left for school and was happy to pop in after school to feed the kitties as we will be out all day. I left the plenty of food so they should be fine all day on their own. Siobhan, David and I went on to the hospital. We were took to my room were we we're met by my sister Wendy. It was going to be a long day and we were not ready for all that would happen.
I first had the canular fitted, straight do
Read, no problems. then had saline and a big bag of fluid put through intravenously. No problems there either, all was unremarkable as the Dr would say.
I then started the cisplatin, within 5 minutes of starting it my throat had a tickle burning feeling. I thought it wasn't something I needed to report as I wasn't sure if it was anything to worry about. It then went to my ears and was making me sneeze so I told them nurse. She stopped the drug right away and went to get the Dr. Looks like I am allergic to it. It was decided that I would have anti histamine drug to calm the symptoms, this worked and the cisplatin was started again at a slower rate which would mean we were at the hospital for longer than we thought. All was done, I has potassium and sodium chloride put with no problems. I was having a lovely sleep after my high as a kite session on the steroid drug when the tingly burning feeling in my throat started again. This time my chest got very tight, I pushed the bell, no nurse came in so after a couple more seconds I gasped to Siobhan to get the nurse which she did. I had oxygen which seemed to have settled it. Now I am waiting for the magnificent Alimta to be put through and then we will get home, what time will that be, who knows , it is 6:45 pm now.

 My bear from the Warriors, I decided to call him Nimble which was my dads nick name when he was younger. He watched over me all day, my warrior bear holds all of the warrior prayers : )
 The first try with Cisplatin, caused an allergic reaction.
 Being sensible, this is the start of the steroid high!
 Still pretty sensible.
 Not for long, things to do with chemo when your bored, make a pair of glasses.....
 Make a mustache, this is all I could do as Siobhan was worried I was going to ruin something.

My second attempt with the chemo, this seemed to work but got another reaction later.

Well, all finished by 7:30 pm, not before the cisplatin had the last word. I got tight and breathless again as the piriton had worn off. I managed to get settled and was given another dose of piriton before I left. We all got home about and no one cooked, we had an Indian curry which I thoroughly enjoyed. I am now in bed, watching TV, doing my blog and ready to hit the hay. Hope nothing happens in the night, I have to ring the hospital if there are any complications.

Wednesday, 16 May 2012

Appointment with my oncologist.

I had a really lazy morning today, watched Jezza on the morning TV, If you live in the Uk you will know who he is, if outside the UK, he is Jeremy Kyle who has a steady stream of helpless cases he deals with every day. Some of the shows are very good but others are just plain entertainment and wonderment of how some people live their lives. A diverse look at life in the 21st century.

I got dressed and sorted out my bed room and changed my bedding while listening to my heart throb, Robert Smith, playing at the Bestival. I had recorded it on my sky + box so have it up stairs and down stairs. He certainly makes my day happier.
I got some washing done, hung it out to dry as it is such a lovely day. I am feeling so much better than I did yesterday, back to conquering the world : )
Siobhan and I then made our way up to see my oncologist. I was ready for a battle about the mistletoe, I am determined to take it. When we sat in his office, I showed him my award from Linda in the USA. He was so shocked to hear that asbestos is still imported and exported out of the USA and Canada and that the Jeffrey mine still produces the stuff (hopefully not for long).
I spoke to him about the mistletoe and he said "no, definitely not", here we go I thought. He explained that the platelets in one patients blood were low so he asked them to come off mistletoe, which they did and the platelets were a lot better. I told him I had been taking it since 2008 and I had faith in it. I won't take the chemo with out it. He then agreed and said if it made me happy, to carry on ..... yipppeeee..... right answer Dr D : )
He was lovely today, he rang the pharmacy to get info about the mistletoe, I gave him the contact details of Dr Orange so he could ask any questions. He seems happy with that. We left the office and went down to the pharmacy to speak to Simon the chemist. I asked him about mistletoe and he seems ok with it all. He will be having a chat with Dr D about it so hopefully he can put his mind at rest.

so that is me, all set up for tomorrow morning. My lovely girl, Siobhan will be with me all day. Kieran is going to be with his dad for tea. Not sure what time it will all finish but sure I can have some fun with it : )

Tuesday, 15 May 2012

Oh what a night.....

I had a fabulous day in work, really enjoyed it. I went out in the evening with Richard from the national asbestos helpline. We are getting closer to launching the charity. We went to the Barbican and saw a few of the wonderful sites of Plymouth, some I would rather he didn't see. I showed him the Mayflower steps where the Pilgrim fathers left for America in 1620. He hadn't seen them before, I also showed him the Tudor house and the Elizabethan house. The streets are so tiny, it hasn't changed a lot and is kept as authentic as possible. I showed him where the private shop was and told him where the red light district is. We also had the pleasure of seeing a couple of the local alcoholics, one a man, one a woman. The woman decided that as she passed it would be a good time to have a wee on the pavement.... poor Richard. So a good tour of Plymouth I think : )

We found a little Greek restaurant called Shirley Valentines and had a meal. I had some little chick pea nuggets and chocolate cake for dessert. I also had a crumbly biscuit with my coffee, wrong thing to do. I choked on it. Poor Rich watching me coughing and spluttering.

We left the restaurant and Richard took me home. It was good to see him and we will meet agin at the meso support group meeting on 30th May.

I went off to bed and tried to get to sleep, no joy with that. i was coughing and spluttering until around 1:30am. I think I need another dilatation for my TOF. While trying to get to sleep after the coughing episode I felt so hot, I was having a fever caused by the mistletoe. I forget a lot about how it works, having a fever is good, I can't take anything for it, my immune system has to take charge and bring the fever down. I was laying in bed shivering but feeling hot and debating about getting out of bed to go to the toilet. I had to go so got myself out, typical, now i have cramp in my foot!!! So there I am shivering and shaking, trying to walk to the bathroom with cramp in my foot, what a sight!
I got up quite late this morning, I was feeling so tired but I did get up, have a lovely bath after Kieran had left for school and got myself ready for work. I had a good day again. Nikki and all the team have become a bit more that just being on a team, we are friends. When it was time for me to go they all wished me well for Thursday and I had some lovely hugs which made me feel good. Tomorrow I have an appointment with my oncologist in the afternoon where I have to tell him I am not stopping the mistletoe, I have faith in it. It has helped me so much and I feel I need it with the treatment.
I hope he can understand that, we shall see.

Monday, 14 May 2012

Good day today

I went to work this morning after seeing Kieran off to school. It was tipping down, a really miserable day but for some reason I feel on top of the world. Fell like I could conquer anything today, sorry Theo....looks like I'm back!!!

I got to work and settled into my seat and set up my computer. I took calls for 3 hours and was supported once again by a very new friend, Nikki. Things have changed so much in 2 and half years so it was lovely to have her sitting with me and listening in.
My face book friend, Kathy is in the same position as me, she doesn't have meso but another cancer, she was working today. It is good to speak to someone in the same position, she had a good day at work too. Monday, your not so bad after all.

After work I got home to a wonderful surprise, flowers and a teddy bear from Angela, Tracey and the warriors. The flowers are lovely, the teddy is so cute, he is now my fighting buddy, I need a name for him so will be looking out for suggestions.
I answered the door to my lovely friend Mandy who got me a little plant for the garden, it's so good to see her and I didn't cry once while I was chatting to her. We do have a good chuckle about things, I think we both have the same sense of humour.
 Warrior Ted needs a name......
 ....... A lovely gift from my warrior friends x x

I am off out to eat with Richard tonight and to see how far things are with the new charity. We will have a good catch up, it has to be a good 2 months since I have seen him.
All in all it has been a wonderful day, I hope every day is like this : )

Sunday, 13 May 2012

Getting back up.

I didn't do much yesterday, stayed home and caught up on the washing. Kieran had his suit case full of clothes that had, had not been worn. Which was which, I don't know so I washed it all. I also found an unused wash bag, don't know why I was surprised, he is a typical teenage boy. Minutes spent washing are precious minutes that he could be having fun.
He went into the city centre and met his dad, they are collecting for the relay for life event they are doing.
He then came home, had a play on his xbox and then off to his dads.

I called Dr M yesterday about my mistletoe. He is now working in Switzerland. I told him my oncologist didn't want me taking mistletoe with the chemo treatment. He advised that there was no issue with it interfering with what the chemo needs to do. I was so happy to hear this. Dr M said he would speak to Dr D if need be. Dr M is such a lovely man, so helpful. He has ordered me some more mistletoe from Germany. I will sort that out tomorrow.
Now I have to convince Dr D that I will be taking it alongside my chemo. Will he refuse to treat me? I don't think he will but I am not having the treatment without the mistletoe. I have so much faith in it and have taken it for such a long time.

Today I feel a lot better, I feel like I have 'ME' coming back again. The sun is out and the tears seem to be drying up. I have decided to go to work tomorrow and Tuesday. Wednesday I see Dr D. I hope he can agree with me were the mistletoe is concerned.

Friday, 11 May 2012

My Bean is coming home : )

I got up this morning and ambled around. Gave the kitties their breakfast and then had mine. I got dressed and slapped on my makeup. This masks everything that is going on inside, I feel like somebody is trying to get out and wants to scream and shout about how angry I am. I went off to the hospital, not a place I really wanted to be but I had an appointment to get a B12 injection done and to pick up pills that I have to start before the wonderful chemo.
I have folic acid to take every day and a steroid to take the day before it all starts. I am feeling so down and know I need to kick myself out of it. I feel like my silent stalker is catching up to me. I need to run faster to get away from him.
I quickly buzzed into town to get a few bits and then home. Kieran will be home today so I was waiting and watching the clock. I know when I get there he will tell me he wants to get the bus home.
I got to school just as his school bus arrived. I saw him get off the bus, I wanted to run to him and give him the largest hug I could but I knew that he wouldn't like that in front of his friends and I would also be in floods of tears as I have missed him so much. I had to quell the pain of the tears, what made it worse was standing in the lovely sunshine and looking at his wonderful face, smiling, happy and telling me about the time he had had. He was so excited. He asked how the cats were, so sweet. At least he missed them. So, I had the suitcase and the back pack, where the welly boots are is any bodies guess. I took all the gear and, as I said before, Kieran is coming home on the bus.
I got back home with all his stuff and just bawled my eyes out. Thanks to my lovely friend Lou in Australia who has listened to my banshee out burst today. Theo and I haven't been this close for a long time, The last time he was this close was 3 years ago, I went to Germany for the very first time in May 2008. 3 years later, here he is again, with that smirkish grin on his face. I hope to wipe it right off of his face. I miss Richard so much, I have missed Kieran this week and Siobhan has just been amazing, she supported me at the hospital on Wednesday and has been my little rock. I have been offered a trial in the USA but it means 22 weeks away from home, such a long time and such a lot to sort out. Work, Kieran, Siobhan, it's an awful lot to do, Dilemmas!!!!

Just unpacked the suit case and found that Kieran had not used toothpaste, soap flannel, nothing. Dirty littl scamp, all back to normal : )

Thursday, 10 May 2012

Work as normal.

I decided to go into work as normal this morning. I woke up, had a few tears with my little cat cuddled into me. Got myself sorted and went off to work. I tried to hold back but it was impossible and I got to work and burst into tears. One of my lovely colleagues was crying with me, such a sweet girl. I had a word with my boss who was happy for me to go home. I decided that I didn't want to do that, I have such a great team that I knew I would get all the support I need. I went on the phones, my decision, and stayed on from about 11 am till 1 pm. I felt so much better after I had done that, it took my mind completely off my problems. I left work at 1:30pm, got in my little car, who is running like a dream thanks to mechanic, Darren. I got home and found that the hospital had called, I have to go to hospital tomorrow for a B12 jab and to get folic acid and steroid tablets to take before the chemo starts.

I have been told there is a trial in the USA, I will add it to my news page. It means going to the USA and I am not sure if it means I will be away for a while, I am in a real dilemma as to what to do. Why does every thing have to be so far away?

So there is no work tomorrow, I will be back in on Monday until Thursday. Thank you so much to my fabulous team and manager for looking after me today and to all the wonderful people who have sent such lovely messages of support.

Wednesday, 9 May 2012

Oncologists today.

I have just returned from the hospital where my oncologist has told me the news I didn't want to hear. My meso has progressed. We talked about me having a break away with the children before I start treatment as I have decided to try the chemo in the UK. My oncologist doesn't want me to use mistletoe. He says it can cause other side affects, this has upset me as it did so well last time.
I have decided to hit it head on and start chemo next week. So out come the wigs again because he says I will lose my hair. That isn't a bad thing though as I love my wigs.
So I have had a blood test today, got weighed and measured for my height. Quite surprised that I am 9 stone as I thought I was 7 lbs heavier than that.
And there you have it, just started back to work as well. I now have a 3 week course of chemo, I hope that there are improvements. Germany is not an option, it is too much money and everyones lives are turned upside down, not just mine. That is why I have said I would try this chemo.

Imaging Report

History : Mesothelioma. Assess response.

Comparison was made with the scan of February 2012

Findings: There is being a small but definite increase in the size of the soft tissue disease in the mediastinum, & neck. The supraclavicular gland has increased from 7 to 9mm. The left apical mass is increased 27 to 30mm. The left internal mammary gland is increased from 14 to 15mm. The aortopulmonary nodes are also slightly increased in size. The disease in the left base is also larger.

In addition there is an increase in the pulmonary disease in the contralateral lung.
The index lesion at the right base as increased from 5 to 10mm. There is also a lesion seen superior to this measuring 15mm which is new. The disease abutting the right hemidiaphragm also shows an increase in volume.
The other pulmonary nodules , thought to be inflammatory, in both lungs are slightly improved. There is no evidence of disease in the upper abdomen.

Conclusion : Progessive disease, particularly in the right hemithorax. The mediastinal and left basal disease has however increased in size slightly also.

A letter to Theo.

Well Theo, you think your so clever, sitting there smirking, laughing and thinking you have won this battle? We haven't even started!!
You may well have progressed but I can assure you that I have all my ammo ready to wipe that smile right off your sorry little face. My size 4 and half boot may be small but it has the power to kick your sorry ass right up to the moon and beyond. I will not be your passenger, I am in control here. Get your act together, your gone. You have a week to sort yourself out, or else.... BOOM!!!!

Tuesday, 8 May 2012

CT blues and MOT's

It been a miserable day today, not outside, the sun is shining beautifully here in Devon, but in my world. Kieran is off for a break with school, he will be back on Friday and I am know I am going to miss him so much.
It is also the day before I get my results from my CT scan I had last week. Kieran went off to school with a suit case, back pack and welly boots in a carrier bag. He insisted he wanted to get the bus in even though I had offered to take him in the car or at least his luggage. He was having none of it and struggled off up the path this morning, I am going to miss him so much but hope he has a fabulous time.

I went off to work, I wasn't feeling too bad until I was asked about going on the phones. Off it went, all the water works, feeling sorry for myself. I so appreciate the lovely team I have, they are wonderful. I haven't known the guys very long so to have their support is wonderful. I pulled myself together and apologised for my emotional outburst. I settled down and went on the phones after an hour or so. All went well after that, thank goodness I didn't see anyone who I knew really well, they would only have to say "how are you" and I would be off again. It's these few days before a CT scan that I want to curl up in a ball and hide away from the world, wake me up Thursday!!!
Halo, my little car, has her MOT tomorrow so we will both be getting sorted out. She is in good hands with Darren the mechanic, he always looks after her.

I am not working tomorrow so will have a quiet day of catching up on the house work and hoping my scan shows the Theo is still stable.

 Kieran all ready to go on his trip with school.
Kieran took all this on the bus, so proud of him and his independence. Well done Bean x x

Monday, 7 May 2012

Work and packing for the Bean.

I went to work this morning, Kieran was with his dad as it is bank holiday Monday.
I got home at around 2:00pm as I had to stop off at the shops and get some odd bits for Kieran, new swimming trunks, shoes and travel bands because he gets travel sick. He is off on a school trip tomorrow, away for the whole week.
I have offered to take him into school as he has a suit case, back pack and bag with his welly boots.
It is such a lot to carry, He has informed me that the bus does have a place for suit cases and is insisting on doing it himself.
I am so proud of him and hope he doesn't have any issues on the way in. He is taking his phone so will call me when he arrives at school, I will miss him, he is such a wonderful boy, so grown up.

My CT blues are alright at the moment, had a bad case of them at the weekend. It takes me right back to the day of diagnosis, I know how much time I have had, far more that I was told I would have. But I want more time, more moments to enjoy with my children. I am not going to be a passenger on the meso train, I am going to be in charge. I hope Theo is still in a good mood and treats me well on Wednesday, I hope his suit case is packed and he will be gone for months, even years.

Sunday, 6 May 2012

Paignton with friends

I went to paignton with Chrissy yesterday. Our friend, Jayne, had taken her caravan to a camping park and is there for the weekend. We met Jayne and Cheryl, our other friend and spent the afternoon chatting and having chips and cups of tea. We took a walk around Paignton sea front, it was so busy. Bank holiday weekends usually are, there was a bike rally going on as well.
I found a lovely top in a charity shop. One thing that did amuse us was when looking in a shoe shop we sam a stiletto shoe with a hold up stocking attached. It was all together!! What happens if I ladder me tights, we all thought. Would that be the end of the shoes?
I didn't take a photo as the guy in the shop knew we were sniggering and was watching everything we were doing. Outside the shop we found something else that amused us. A basket with shoes in it. The price sign said "one for 50p 2 for a £1", confused? So were we, is that a shoe for 50p and the other one for a £1 or a pair for 50p and 2 pairs for a £1...... Mmmmm yes........ Where is the bargain? Either way there isn't one.

We left Paignton about 5:30-6:00pm and got something to eat, we went back to Chrissy's place for another cup of tea and watched a DVD, slum dog millionaire.
I got home around 11 pm and just felt so miserable, I have had a such a lovely day. The CT blues are on their way. I kept thinking about getting Wednesday out of the way, all this brings back the reality of what is going on in my life, Theo has his hands on my shoulders and whispering in my ear that he is behind me, does he mean behind me as in support or behind me as in he is moving in.

I went to a car boot sale with Siobhan and David yesterday, not much happening, we were a little late going but she did find a little sylvanian bear. We had lunch at Endsleigh garden centre and her little bear joined us : )

 At the holiday park to see Jayne and Cheryl.
 Scratching my head at this bargain ???? puzzling.
I found a new pet : )

Thursday, 3 May 2012

Polling day and work.

I woke up my usual time this morning, went into the Bean and informed him I would only call him once to get ready for school. He mumbled a tired "why"? Why, I said, because you have school. No I don't was his reply, Do'h.... it's polling day..... oh no, I could have had another half hour!!!
I am feeling all bunged up and yukky today, think it is the contrast dye from yesterday.
I finished work, got home, dishwasher not done by the Bean, could have put a bet on that one. I then went down to vote, I couldn't take my car down. There was a notice on the gates that were shut which couldn't be seen while driving. When I got to the gates I saw there was a phone number to call if you were disabled. The polling station is such an awkward place to get too as it is on a busy road. It was not going to be helpful to anyone who did have to drive through. I walked down, voted and then back to the car. A little rest and then back home.

I am still not liking this new look blogger, it is so different. I have used the old one since I started my blog so this one is a whole new ball game. Everything is shifted and so hard to navigate around the page. I will get used to it, I intend too, the blog must go on!!!

I am pleased to say I have completed a video for the warriors. It is lovely even though I say it myself. The music is available on iTunes. The first song is "Lazing in the sun" written and produced by Glenn Boulton. It is sung by Derren Boulton and Jacque Lewis. Glenn's father in law had mesothelioma and is sadly no longer here so it makes the song even more special as it was written with mesothelioma in mind. It is 79p on iTunes and proceeds still go to the Marie Curie Cancer Care as far as I know.

The second song, "time is a bottle" is so beautiful, such lovely words. One of my all time favourite songs. It is sung by Jim Croce who wrote it for his unborn son, it has some lovely words in it.

It can be found in my channel, Phuphita.

Please feel free to let me know what you think either on youtube or via my email :

Wednesday, 2 May 2012

My CT in pictures

 All ready for the scan, hoping that Theo is going to be good to me, after all he has been to LA.
 Thanks to the staff who take the pictures for me.
 Ready for the scan, through the hoop I go!!!
The very fetching gown I wear to have Theo's picture taken, I hope he appreciates it!!!

CT scan today

Well, I am off out early today, got to be at the hospital for 9:00am for my latest CT scan. I have been feeling really well and hoping this is emulated in the scan. I will get the results next week. I am feeling terrified, feel like I could burst into tears, feeling sorry for myself. I know how lucky I am to be here and how good my life is.
I know how much i have had since that awful 6 - 9 months diagnosis, but I want more, I am not ready to go anywhere.
The feeling I have this morning is one of just crying, doesn't help that I have just started my period so hormones every where. It's at times like this I feel so on my own, so lonely. I really hate these days, it is so beautiful outside, the sun is shining and I should feel happy, I am still here, so why do i want to cry and feel so sorry for myself?

Theo has been a super star, I want him to continue being a super star, I want to give him a gap year, give him some time off, take a break, go and meet up with Mr Nasty (Mavis Nye's tumour) and jet off to the states and meet up with Phil (Heather Von St James' tumour) and kidnap that naughty tumours that are bugging Janelle and Larry in the USA. Infact just hire a bus and take them all with you. I am imagining them all with there silly hats and bad shirts with camers round their necks, taking pictures of everything they see. Have a great time boys and please....please.... don't hurry back!!!!