Sunday, 31 March 2013

Happy Easter Everyone

Happy Easter to all the readers of Mesothelioma and Me, to all my warrior friends, family and especially to my children, Siobhan, Richard and Kieran, Another milestone conquered.
Kieran did his Xbox marathon and raised a massive £268 for cancer research, Well done Kieran, such a good thing to do. Be very proud of yourself, I am very proud of you.

Thank you so much to everyone who sponsored him.




I tucked into an Easter egg after my evening meal. I bought bunny Ears, I love them. I made a promise to myself, next year it will be a bunny suit. I am looking forward to that one : )

It has been a quiet and lovely weekend. Next week it is back to the normal routine, Dr's again to get some antibiotics that I can take. Now I know I am allergic to Penicillin it should be easier. My shoulder has started to play up again, I do wonder if the little amount of Antibiotics I have had has helped with the infection, it's just not enough to blast it.

It is also Global Asbestos Awareness week next week.


Please take a moment to watch this video fro the British Lung Foundation. Asbestos is dangerous. Don't mess with it, your life depends on that.


Friday, 29 March 2013

The end of an era.

Yesterday was lovely, the sun was shining and I was off to see Kieran's last school assembly at Plympton St Maurice Church. It is a lovely place and certainly sets a good back drop for the assembly.
Kieran played a few bars of forget you by Celo Green on the keyboard. He did very well. The younger children did little performances about Easter eggs and remembering the real reason for Easter. It was a short service, one hymn and then all off to school for coffee. I didn't go back to school, I dropped Kierans' dad home and then back home to my house.


Kieran and I at Easter 2008, the year he started senior school. Where have the years gone? I have just realised, it's the same coat : )


Kieran and I at the church yesterday.


The passover scene in the back ground was knitted by a 94 year old lady.


We found a little reminder of Spring in the church yard. With the weather being so unpredictable at the moment, Spring seems to have been deleted.

I had a Doxycyclin yesterday morning. I took it when I came back from the church. I had had a 50g one at the hospital on Wednesday and was alright with that so thought I would have another go at taking them as I need to kick this chest infection. How wrong was I, I took it when I had my lunch, with plenty of water as the instructions say. With in an hour I was bringing it up. This morning I thought I would try it without food so took one this morning with plenty of water. Same again, I brought it up. I have to conclude that these tablets upset my stomach so they are off the list of ones I can take too. I do wonder if it is the strength. I only had 50mg and the ones at home are 100mg. I have to take 2 to on the first day and 1 for the rest of the course. It could be that or it could be that now I take Omeprazole for my reflux, it's that which is irritating it. Who knows, it means another appointment with the GP.
Today has been very quiet, Kieran met his dad in town to get a game, He is doing a 12 hour Xbox marathon to raise money for Cancer Research. He has raised £191 so far, well done Kieran. He made £140 last year with his radio show and £340 for comic relief last year. I am so proud of him.

Another one I am proud of is Siobhan, She has been very busy being creative. Her latest this is her cat stickers. They are lovely.

Anyone interested in her work, please mail her at : siobhan@tinrobo.co.uk

Well done Siobhan x x x

 Siobhan's prints and cat stickers. She is selling the cat stickers on her ETSY page for £1:35 a sheet.

http://www.etsy.com/listing/126880451/lolcats-sticker-sheet

The link below is her web page.

http://tinrobo.blogspot.co.uk/


So there it is, After hearing in 2006 that this is it and 2007 thinking it would be my last Easter Assembly, I am still here and seeing my 6th one and seeing the lovely work my daughter is doing  : ) 
What was lovely yesterday was as I walked towards the church, on the path was a little white feather. I like to think my dad wasn't very far away x x x x

I am so lucky to have this life.

Wednesday, 27 March 2013

Onwards and upwards.

I was up early this morning, made Kieran's sandwiches and got myself ready for hospital. I had my breakfast and had a bit of a coughing fit. Lovely, a chest infection is definitely starting I got there early and got a parking space. It wasn't that close to the hospital but I managed the walk, I think I stopped about 3 times. I made my way to the hospital, I was there 15 minutes before I needed to be. It is a lovely ward, Eden, I hadn't seen it before. It is very much like park attwood, a gentle dr who knows what he is talking about and explains everything so well. I had sent him pictures of my reactions as they happened so he was up to speed with what went on after I left the ward on Monday. I had reactions to number 2 which was Penicillin and number 4 which was Augmentin. I also told him that I had to take a piriton on Tuesday morning as I was coughing and getting very tight chested.

Next was trying the doxycycline which I had a reaction to. I am hoping there is nothing. I had a cannula put in just I case anything happened, no need, I was fine, I am so pleased. I asked Dr K if I could continue the course of doxycycline I have at home, he said yes. I hope I can get on top of this infection now and then have the chemo, I need to get that out of the way so I can get my life back.

Next challenge, getting back to the car. There is an incline so getting to the hospital was all down hill, a little easier than having to walk up it which is what I would have to do now. I looked at the car park, it was like looking at Everest, I can do this I am telling my self. I am the little engine that could. I started the walk, stopped about 4 times, I could see Livvy as I stopped to catch my breath and was wishing I had a button on my key fob that would drive her to me. I think, I can, i think I can I said in my head over and over again as I got closer and closer to the car. I touched the handle, I know I can, I said to myself, proudly: ) I did it. I say in the car and got myself together before driving ff. well done little engine.

So all in all, a good day.

I will be having more tests but not until April. Dr K retires tomorrow so I think I squeezed in just in time. I wonder how long I would have to have waited if I didn't pay privately o see him first?

Kieran didn't have his parents evening yesterday as his teacher was ill so I am not sure when that is happening. He has his last Easter service at school tomorrow, not long before he leaves school, where has my baby gone, the vulnerable little 10 year old in 2006, the year I was diagnosed. I can remember having so many tears that year and 2007, thinking this is it, I will never see this again, and here I am, watching his last one.

Life is good : )

The picture below is my reaction to penicillin, I was so pleased to hear that I was allergic to it and it isn't psychological as the junior Dr had informed me. No anxiety here : )

Tuesday, 26 March 2013

Immunology appointment.

It's Monday morning, the start of the week. Kieran is off to school, he has a treat today, he is going paint balling. I hope he has a fabulous time, hopefully him and his friend will reflect a little on the games they play and see how hard it is to really be up against the enemy, but I doubt it.
Saying that, I hope he has a great time.

I made another GP appointment, my breathing is really bad at the moment, I am not sure why, I am sure the meso is under control, I have had a blood transfusion not long ago and can't believe that the blood count would drop so quickly. The only other thing would be asthma, mine is usually very mild but maybe the cold weather is causing it.
My GP did the usual checks, he suggested another blood count test next week and steroids, I have another 7 day course.
It is so frustrating not being able to do the things I know I can do, even a simple task like changing the duvet or walking upstairs. I know I can do it but my body gives up, my mind doesn't and that is where the anger sets in. I am not one for asking for help, I hate it, I feel so stupid and useless, but I know I have to. Siobhan has been so good, helping me change my bed and keeping an eye on me. It does make me feel like a burden and I don't want to be. I know I have to take a step back and let her and my friends help. I think we are all the same, very good at helping others but not good at receiving it.

In the afternoon I went for my oncology appointment. I got to the hospital, the queues for parking where awful, people were being directed elsewhere as the car park was full. I decided to park by oncology, I managed to find a space there and I got a disabled on, thats a first since all the charges came in. I got to the ward I needed, it is called Eden, I haven't ever noticed it before. I was met by a nurse who showed me to the waiting room.
Dr K arrived and said to follow him to his office. Such a lovely man, very gentle and kind. He explains everything well and knows what he is talking about. He said I would have the skin test done first and then the drugs put further under the skin. He would be testing Augmentin, Tazocin, Penicillin and Amoxycillin.

The skin test didn't reveal anything apart from the redness and itchiness from the histamine which is expected. The under the skin test was the same, nothing came up after an hour. I have been booked in for Wednesday morning to test other antibiotics, I think this will be done intravenously.

I got home after a couple of hours at the hospital, Kieran had had a lovely time. I was pleased to hear that.

Pin prick test of drugs, Amoxycillin, pencillin, Augmentin and Tazocin. The bottom right (+)
is histamine, it is supposed to give a reaction.


 The under the skin test, no reactions at the hospital.


 9:49pm last night, number 2 is not happy.

Number 2 again, really itchy, it woke me up.

Dr K has just called, I have sent him the pictures, he seems to think I have an allergy to penicillin which I do agree with him. I had a reaction last night at 9:49pm and again at 2:00am this morning.
I will be back to the hospital tomorrow morning to have intravenous antibiotics.
I got put of bed this morning and took an anti-histamine as I felt tighter in the chest than I usually am, I was coughing a lot too. I told Dr K about this and sent him the pictures.
Saw a bit of the lovely colour when I coughed this morning so I definitely have a chest infection. At least now I know it's not all antibiotics I am allergic too, thank goodness for that.

Sunday, 24 March 2013

Well done Mavis.

It has been a weekend of watching the conference online. Mavis and I couldn't travle this year due to our Mesothelioma. It was so good to be included in what was happening. We stayed up until 12:30am to watch all the talks from Asbestos experts, our friend, Christine was there too and, of course, the lovely Linda. She works so hard and is, not doubt, working on next years program. We caught up today and watched Lou present Linda her ward.

I was so proud of Mavis, I had great memories from last years conference.
I was so honoured to get the ADAO award, It is very close to Linda's heart, It is named after her husband. She doesn't give it out to just anyone. It acknowleged the work that we, as mesothelioma warriors, have done with social networking. Setting up support groups and meeting people who may live near us when we can. It also acknowledges the awareness that we promote about asbestos and the search for a cure. The award didn't just belong to me, it belonged to all warriors.


How proud was I to hear back that Mavis, my wonderful warrior friend had won the 2013 Alan Reinstein award. Mavis doe so much for people, not just face book and support but joinign patient and carers gropus and puts across the NHS from the patients perspective. She has becaome a very special friend to me, we live parallel lives.
Well done my friend, I can think of no one better to carry on our good work. You deserve this and many more.


Lou from Australia went along, she is a meso warrior and very kindly helped Christine and the flower group with a secret mission. We had sent an award to Christine to give to Lou when she met her in Washington and for Lou to present it to Linda, Secret mission underway : ).
It was a meso warrior award 2013, Mary our lovely health professional from the USA got the 2012 one so we all decided it would be a great surprise for Linda if she got an award,  Mission complete, Lou presented it to Linda, I had tears in my eyes as I watched 2 magnificent warriors on the podium. i think Linda was moved to tears too. It was good to see Heather, I met her last year, She, like me, is into her 7th year. It is so good to see people fighting back and taking control of this awful disease that still has no cure. Thank you Linda, Doug and Emily and your wonderful team for a fantastic conference. I am hoping I can go next year.


Christine from IATP and Heather, Meso warrior. Wonderful picture x


Linda's award, The 2013 Meso warriors award, Presented to Linda Reinstein for outstanding contribution to the meso community.


Mavis with her husband, Ray, Looking very smart, With Linda. Mavis,  receiving her Alan Reinstein award 2013 from ADAO. Well done Mavis x x So proud of you my special friend x x


Lou who presented Linda with her award. Mission accomplished : )

Well done everyone who took part, you are all amazing x x x

Friday, 22 March 2013

ADAO 9th Annual conference, Washington DC.

The ADAO conference will be happening tomorrow, 23rd March until 24th.. I had a wonderful time last year, great memories and meeting some very powerful and driven people. People like Matt Peacock, a well respected journalist from Australia, Barabara McQueen, wife of the late Steve McQueen, Fernada Giannasi, who has fought so hard to rid Bazil of asbestos, the fight still goes on. Italian film maker Nicollo, who made a very moving film about the asbestos trial in Italy and featured a lovely lady who is no longer with us.

What a great bunch they are and a very loud voice all together.

The link above is for the live stream. It all starts tomorrow at 8:30pm USA and 12:30pm UK.

http://www.asbestosdiseaseawareness.org/archives/19577


Linda and the ADAO team hope you can join them. I know where Mavis and I will be sitting all weekend : )

Thursday, 21 March 2013

All moving forward.

Well, Dr K was true to his word, I had a phone call early this morning. I have an appointment at the hospital on Monday afternoon. I think this maybe the allergy test but am not sure.

I haven't done much today, did a bit of washing And the dishwasher.
I feel asleep on the sofa again, felt like I needed it.
Hopefully Monday will now sort out the problems with the anti biotics, what is allergy and what is a side affect. I have a feeling a may be allergic to penicillin now but we shall see what the Dr says about it all. So pleased I moved my butt, again, to find a way to get things moving quicker.

Theo is having a good old go at my left side today, not the shoulder, although that is still paining me. I have put a deep heat patch on to see if it will help, so far so good. So when I get a little relief from that, he decides that is is time to bash out of his cell. Please do it, go, don't come back, are your rubbish with you, and while your at it, I have a whole list of tumour mates you can take with you. Be gone, damn pain in the side!!!

Wednesday, 20 March 2013

Update on the immunotherapy appointment.

I have had a very restful day today, fell asleep this afternoon. My shoulder is still giving me grief. My appointment for the immunotherapy at was at 5 pm. Siobhan came with me. It wasn't at the hospital, it was at a clinic. I didn't have to wait long to meet Dr K. He showed Siobhan and I to his room. He asked me questions about ,y reactions to the anti biotics and the usual, what is your medical history. H looked at the reactions to the drugs and said that some of them look like side affects rather than allergies but some do look like allergies.

He wasn't impressed with the letter from the consultant, it was very muddled. He said he could do a blood test today but all of the tests had to be done on the NHS at Derriford hospital. I asked him if it would go through quicker, he said he would try and get me an appointment but couldn't promise anything. He said he had seen my letter and the problem they have is the admin side of the department has been removed and that is why it is taking so long to go through.
I felt much more positive about this now, it seems to be moving forward, thank goodness.

I just want this all sorted out so I can move forward. What a dilemma. Hopefully this will sort out what the problem is but, as usual with me, it sounds like it is very complex. I think complex should be my middle name : )

Tuesday, 19 March 2013

Successful day.

I had a bad night with the shoulder again, can't remember how many times I woke up. When I did get to sleep, Storkie boy would wake me for a cuddle.
I spoke to Richard, my friend from the national asbestos helpline. I have been feeling a bit sorry for myself and a little lost as to what to do. Richard gave me the kick up the backside (nicely I might add) that I needed. I got off the phone from Rich and called my insurance company. I get health insurance through work and know how lucky I am to have it. There is still no answer or feedback from the secretaries I have spoken to. I have been told that my letter of referral won't be looked at until Wednesday. The secretary was assuming it was on the desk of the Dr.

I spoke to my insurance company as no one can tell me if the Dr I need to see does a private clinic. I was pleased to hear that he does and got the number. I called the clinic and spoke to a most helpful secretary. She told me there was an appointment tomorrow afternoon at 5, perfect, I took it.
I am feeling much happier now I have got somewhere. I am getting worried as I have been feeling tired and yukky today. I am not sure if the pneumonia is back, I have a little bit of the colourful muck. It's just a matter of keeping an eye on it.
I didn't feel hungry at all tonight, I managed a tiny amount of my meal. I then made a Complan drink to give me some nutrients and juiced some blueberries, strawberries and raspberries.

I still need to sort my car out but will have to leave it until I feel better. Her battery needs charging and she does ned some work. I will have to get onto that project when I am feeling better. I am so nervous about connecting the battery terminals to the battery, don't want to blow meself up!!!!
Mind you, a couple of hunky firemen might just make me feel better : )



Thank you to Shelby who made this lovely graphic. She lost her husband and her friend last year to mesothelioma, she has a memorial and prayer page. It was so thoughtful of her to add me to the group and for her prayers. We have a wonderful warrior community. I am so grateful to have them all in my life, Like Richard today, we all support and help each other even when there are more personal and heartbreaking issues going on. x x x

Monday, 18 March 2013

What's next?

I took my new car for her 4 week check up today, all is fine with her, I wish I could say the same for me. I am now in limbo land and not sure what to do next.
When I got back home, I called the immunologists secretary only to et an answer phone. She was supposed to be calling me back on Friday but that didn't happen. I then called another immunologist who is with the same team, got her secretary, what a waste of time that was. I said a referral letter had been sent to Dr K, I also told her I had been given the name of the other Dr by my lung nurse. All she kept saying was the letter is probably on their desk and it will be looked at on Wednesday. I tried to explain my situation, she didn't seem interested. I can understand that she is only the secretary but she could have asked to take my number and get back to me... useless.
I rang Dr D s secretary, another answer phone. I left a message and as yet, have heard nothing.

I amso frustrated at moment, my shoulder is playing up again, I took some paracetamol with nurofen this evening which seems to have helped for a couple of hours. I know I have a slight chest infection, siobhan has tonsillitis so I am waiting to see if I get a throat infection and hoping I don't. I am stuck if I do.
All I want to do is get that damn chemo out of the way and get my life back.

I was upset to hear that a friend I chat to in Australia is now very ill, it doesn't look good, this disease is so cruel. I thought she was a miracle lady as she has survived 14 years with this bastard thing. Seems none of us are invincible. My thoughts are with her and her family x x

Lunch with Rita yesterday

My shoulder is still playing up, not too much during the day but mainly evenings.
It was a lovely day today, sunshine and blue skies, shocking to see that my friend in Oxfordshire had deep snow... what is going on?
I had a slow morning, pottering about, getting dressed and waiting for Rita to arrive.
Right on time, she arrived at 12:30pm. We made our way the the Elfordleigh golf and country club.
The meal was lovely, Being a veggie, I always find there are mushrooms or peppers on the menu. I don't like either of them so usually look for vegetables.
The pictures have got a little mixed up, dessert is first for some reason.


This was dessert, Rum and Orange cheese cake.


This was my main meal, a roast beef dinner, without the roast beef and gravy. The vegetables were cooked perfectly.


This was the starter, Goats cheese with beet-root and pine nuts.


Rita and her friend, Eric, such a lovely couple.


Eric and I with the back drop of the golf course.


Rita and I, she is very special to me. Such a wonderful friend.

The last time was there was over 26 years ago, I was pregnant with Siobhan. I went to a wedding there, such a beautiful place and just how I remembered it.

The weather stayed good all day. About time there was sun shine, I think we all need it.

Sunday, 17 March 2013

More pain.

I had a lovely surprise yesterday, a call from my friend, Linda, who I haven't seen for a while. She came over for a cuppa and a chat. She produced a little pot of Daffodils and a gift, naughty Linda, such a sweet thing to do.
It was a dragonfly brooch, so pretty, it catches the light beautifully. We chatted for a quite a while, it was a lovely catch up.
I didn't do much else during the day, later on I had a takeaway, another friend came over. That was great too, we had a good old catch up as well. I ate all my curry, my appetite seems to be back to normal at last.
My friend left about 9 p.m., i got myself ready for bed. All day I have had no problems with the shoulder tip pain, 24 hours free of it, I go to bed and it starts again.
I took Salpodol, that took about an hour to get into my system. I was getting so angry with it.
I didn't want to take Oramorph because it makes me so sleepy and I am having lunch today with my friend, Rita and her friend, Eric. I want to feel bright and alive, not sleepy.
The sun is shining here, blue skies, so I hope this is it for the day. We are going somewhere out on the moors for lunch so dressing up warm is a must.
Tomorrow will be a day of phone calls I am sure, Sorting out the immunology appointment.
I just want to get on and get all this done so I can have the chemo treatment and get back to work. I want my life back. Its all needles and hospitals.

Who ever is in charge of dishing out problems, I think you have had your monies worth ...... Enough now!!!



 A dragonfly brooch and a little pot of Daffodils from my lovely friend, Linda, Thank you so much.


Saturday, 16 March 2013

All transfused.

I was up early yesterday morning and got ready to leave for the hospital. The taxi came around 8:45 am. Kieran went off to school and Siobhan was still tucked up in bed.


This is the sight I see first thing in the morning, They follow me into the bathroom and then down stairs, it must be breakfast time : ) I have no idea what Amber thinks she will find in the sink, she digs at it, crazy kitty : )


I arrived and was taken to the room where I would be staying all day. It was lovely to see so many familiar faces, I think I am becoming a fixture in the hospital now : )

The anesthetist came in and dod the cannula, He was great, he number the area he was going to inject first, what a relief as it can be painful at times trying to fid the vein. 
All done and ready for the blood, Trish, the chemo nurse brought in her little red box containing the Count's best house red. We got all set up, all prepared for a reaction as well. It was started, I had a sensation in my tongue but it was so mild, I was doubting wether it was a reaction or not. I didn't say anything and it seemed to clear up, I had a funny taste as well but, again, I doubted it was a reaction as it was so mild. I had the first bag which took about 2 hours. I got untied from everything and went to the toilet. I sat back down when one of the nurses asked if I usually got so breathless, I told her that with Moving about, I do. Thats when it happened, AGAIN..... I could feel my chest slowly tighten. 



All ready to go to hospital with Cher Bear, The t-shirt has a picture of a painting done by the wonderful Cher earnt her angel wings this year. It is very special to me. Nimble as well with his Angel dust and brooch from my wonderful warrior sister, Anglea, Tracey and Stacey, And, If course, my lovely warrior mug from Lou.

                                                 
                                                   Ready and waiting for the transfusion.

                                                       A coffee in my very special mug.

I told the nurses what was happening and they gave me some oxygen. Trish had prepared a bag of tricks before hand so all was ready. I had Piriton and hydrocortisone which made me feel very sleep and did clear up the breathlessness. The second bag was wired up and induced. All were on standby, The second bag was started. All went well with this one, I was drifting in and out of sleep.

All was finished around 7pm. It was a long day but a good day, another hurdle out of the way. I got a taxi back home and had something to eat. I was still very tired and ended up snoozing on the sofa with Storkie Boy. Kieran came down and woke me up so I thought it was about time I went to bed. My head hot that pillow and I was out like a light, it's the first time I had slept right through till morning for a few days and no pain, wonderful. I am not sure how long the "no pain" will go on but I hope it's a long time.

Thank you Steve and Linda  for you lovely card. It was a treat to come home to a message of support. So many good wishes and thought have been received, I am so humbled by all the kind words.
I am very blessed to have the life I have and so many people around me who mean so much x

Friday, 15 March 2013

Hello pain. Why do you return so soon?

It is 2 am and the oramorph I took at around 11 pm is wearing off. I have had some sleep, I will try and catch up tomorrow while having the transfusion. I still have another hour before I can take anymore.
I bought a battery charger at the weekend and silly me, after speaking to my friend, Jayne, I realised it was the wrong type. The battery has to be removed from the car and charged indoors, silly me!
I took it back and changed it for a portable one. Now I have to learn how to charge it, making sure I put the crocodile clips on the correct pat of the battery. I need to get halo moving again, she has been in the garage for a month.
I am hoping to sell her to someone who will give her the TLC she needs. I know she has to go regardless but I wan to give her a chance to move on and be used and not scrapped.
She is a good car, just needs some fixing up.
No call from the immunologists secretary yet, she did say she would call today, my lovely lung nurse, Kate, called with a name for me to contact as the immunologist is retiring.
I will get onto that next week.
I also had a call from the sister on the ward I was on, concerning my care plan and details of a meal I. Am supposed to have had added without speaking to me. We both agreed that something needed to be said. I told her I am happy it is being dealt with and I have a voice, there are vulnerable people that don't and the staff need to know just how important these charts are.
I also told her that I was in for a week and didn't ghetto see a nutritionist or get a decent meal. Any dietary requirements seem to throw the kitchen services into a downward spiral, they are letting people down.
It was a good conversation. I told the sister that I had no problem with the staff at all, they were wonderful and were so busy it was understandable things were done on the quick but it shouldn't be happening. It is good to have feed back and for someone to listen rather than try and justify why it was done and make excuses.
It's going to be a long day tomorrow, taxi booked and computer packed so I am all ready to go. I am expecting to get some reactions when I have the transfusion, I think Dr D is expecting it too as he has told the staff I have to be watched, so no tricks tomorrow : )
I went done stairs and made myself a movicol drink and a complan milkshake. Walking upstairs is hard a three moment, I am so breathless. Hopefully tomorrows transfusion will help with that as a low blood count does affect the breathing. Here's hoping for a good day with no issues x x




Just a little message to Mavis and Ray and all the other warrior patients and families out there. Thinking of you all as our battle continues x x x x

Thursday, 14 March 2013

Damn you Oramorph!!!

Apologies as this will be a descriptive blog today..... I forgot all about the problems with Oramorph and constipation.
this morning I really needed my little stuff fairy, Jan C : )
I am bunged up, wonderful Oramorph. I thought, while the house is quiet I will go a contemplate in the bathroom. The cats are waiting for their breakfast, Kieran's alarm goes off and I am sat thinking "please don't need the toilet yet"!
Then I got to thinking if there was an emergency, what would I do? I am mid way through expelling and anyone who has had constipation knows just how difficult this can be. I was imagining me trying to gather myself together to get out of the house.... oooeerrr!!
I do think about daft things at times.

Anyway, I managed to get rid of some of it and took a Movocol to start the process, I hope it sorts itself out so, it is so uncomfortable.

That out of the way and back to what is happening in the world.
Dear Mavis, my lovely warrior friend and her husband, Ray, had a night of it. Poor Ray has had a heart attack and is in hospital. He has to stay in for 5 days, Mavis and her little dog, Louis, are missing him I am sure. Get well soon Ray, hurry home, and take it easy!!!


Sending them both love and special thoughts x x x

Wednesday, 13 March 2013

What a busy day.

It has been a busy one today, not intentionally. I went to the South West Mesothelioma Support Group meeting, it was lovely seeing all the wonderful warriors. We had a talk from a guy who is organising a patient and carer forum. This is what I have been looking for, it is somewhere  that the patients and the medical professionals all come together and learn from each other. I am very interested in it.
There is also a survey/ trial going to be started by one of our oncology Dr's, if we get chosen. So much is going on.
After everyone had gone, I spoke to Kate, our lung nurse, she had been working very hard to find out information about my immunology appointment. I am pleased with the support she has given me.
While at the meeting Siobhan sent me a text. Dr D's secretary had called, I have an appointment at 3 pm today with Dr D. I called back and left a message on Dr D's answerphone to say that I would be there.

After the meeting I went home, I got to the gate and met the postie who gave me our letters and a little parcel. I went in doors and was certain the little package was for Siobhan. When I read the label, it was for me. I couldn't remember ordering anything. Little 'ol me gets very excited with parcels : )
I opened it and inside was a little gift from Lou, Denise's daughter, the lovely lady who I blogged about yesterday, she took the beautiful dragonfly picture.
The gift was a mug with Denise's dragonfly on and a little message "VERY SPECIAL MESO WARRIOR".  I was so overwhelmed, how lovely.  what a lovely, thoughtful gift. Denise would be so very proud of her girls Lou and Kelly. They have had such a tough time, especially last week being mothers day and here they are, with all their heartache and pain, thinking of someone else.
I love this little mug and will treasure it so much.


Denise's beautiful dragonfly picture put on a mug.



 Thank you so much Lou, What a lovely thing to do x x x

A quick bite of lunch and I was off out again to see Dr D. I am loving the new car so am having no problem being in and out of the house.
I got the the hospital and waited to see the main man, I didn't have to wait long. He was so helpful, as always. I have a transfusion on Friday, we ironed out a few things there as we went to see the chemo nurses to explain what would be happening. I would have to be watched as I would probably react to the blood again.
I told Dr D about the referral to an immunologist, He told me to explain my situation and see if I could get an appointment ASAP.
I asked Dr D about the pain in my shoulder. He said it is more than likely a chest infection as Theo, my meso, is on the left. That was good to hear. He said there would be no chemo until things were sorted out so don't think about that at the moment.

After the appointment I went home and rang the immunologists secretary. I told her my name, she said that Kate, the lung nurse had spoken to her. I said I had a letter from the respiratory consultant referring me to Dr K. I received the letter on Monday, Dr K hasn't received the letter of referral. I was very surprised as Dr K's letter would have gone through the internal mail.
The secretary said she would call back tomorrow. I have explained my situation and told her that the problems with the anti biotics is holding up the chemo treatments.

So, for now, I think things have moved forward. Thank you so much Dr D. : )



Pain again!!!

Last night the pain in my shoulders got really bad, I took Solpadol the night before which didn't really help much. I did manage to get off to sleep eventually, After about an hour of waiting for the pills to work.
Last night it was the same again, So painful, I believe one Dr called it shoulder tip pain. The last time I had it was when I had problems with my gall stones. I am not sure if it is to do with the liver, something was said about it a few weeks ago but I have heard no more, or the chest infection that may well be lurking, ready to pounce. I don't have any mucky stuff so I don't think it is a chest infection. Day times it seems to ease off, I try to keep myself moving so I think that helps, evenings is when it comes on worse. I took 5 ml of Oramorph, it didn't seem to do much so I took another 5 ml.
I slept well, the pain was in the back ground, I could still feel it but the Oramorph seems to dull it.


I am going to go to the Mesothelioma support group meeting at the mustard tree today, It will be good to see everyone again.

Tuesday, 12 March 2013

Remembering Denise


I had the most beautiful picture sent to me on Facebook today.
Lou is the daughter of Denise, a wonderful meso warrior her fell asleep last year. She had a new camera which Lou had found pictures on and one of them was this picture of a dragonfly. Denise certainly had an eye for beauty. It is a perfect picture.
Thank you so much Lou, it means so much to me that you thought to send the picture to me and what a wonderful legacy your mum has left.
I was privileged to meet Denise in October at the mesothelioma UK conference, such a wonderful lady, a West Country bird like me. I will remember her with a smile and this beautiful image will always have a special place in my heart.


Today.

My GP called this morning, he is still trying to get hold of Dr D. He said my bloods were low and I need a transfusion, I asked him if he wanted me to call Dr D as well, he said yes so that is what I did but I did it through the chemo nurses so they could bleep him.
The nurse rang me back and said that I needed 2 units and now that I have a specific blood type, It would need cross matching ASAP. I went up to the hospital right away. I got the blood cross match done and will have the transfusion on Friday. I still have a pain in my shoulder, it came back last night. I tried Solpadol which took around an hour to take affect so tonight, if it is bad, I will take oramorph.
Usually the pain is chest infection, maybe it is because my breathing is difficult at the moment. I am hoping that after the transfusion I will bounce back and the pain will go.

It has got very cold here. There is snow in a lot of places all over the country but nothing here yet.
The meso meeting is tomorrow and if it snows it will be cancelled I am sure.

I have been asked to take part in the Royal Marsden online learning environment for the school of cancer,nursing and rehabilitation. I am asked questions about living with mesothelioma from a patients perspective, This will be my 3rd year, I am so proud to be asked again. I am always asked if there is anything the nurses cannot talk about but as it is learning, I think I have to be open about everything, how will they learn otherwise. Some of the questions can be quite graphic, I am happy to answer any of them, Sarah, the lung nurse at our local support group, took part last year and said she enjoyed it and learnt from it.



Support group meeting tomorrow


The next meeting is on:
Wednesday 13th March 2013
At the Mustard tree, Derriford Hospital, Plymouth, Devon
At 11:30 am.

Dates for the diary :



Mesothelioma Support Group Dates for 2013

Wed March 13th

Wed April 10th 

Wed May 8th

Wed June 12th

July  - Date to be confirmed Mesothelioma Event at Saltrum

Wed August 14th 

Wed September 11th 

Wed Oct 9th

Wed Nov 13th

Wed Dec -  Date to be confirmed Christmas event at Saltrum

Monday, 11 March 2013

Drs today.

I made another appointment to see my GP today. I have heard nothing from the hospital consultant or immunology. Dr D back today so maybe things will get moving.
I had an early appointment, explained to the Dr that I had another reaction at the weekend. I think he is at a loss of what to do. No more anti biotics are being given to me until this is sorted, he tried to ringDr D but the line was engaged, he said he would keep trying. He recommended I had a blood test to check my blood count as I am still having difficulties getting around.

When I left I went straight to reception to book a blood test. I was told it would be Thursday, I explained this was too long and the receptionist looked again, she looked at the nurses appointments this time rather than the phlebotomist, there was a cancellation and I would only have to wait 10 minutes, perfect. All done, Siobhan and I left the surgery, we posted a parcel and did a bit of shopping, it is so cold today, we had a little snow, well, if you can call it that, wispy bits of talcum powder floating around, hardly noticeable.
We got back home and I had a coffee and a toasted tea cake, lovely.

All was going well, the British gas man came round to check the boiler agin as we have had problems with it losing pressure. Within 30 minutes of him going, S I obtain called out, " mum, there is water leaking!". There it was, dripping from the ceiling onto the floor, brilliant. I called the British gas guy back only to get his answer phone, I called our insurance people only to be told it would be a 2 hour wait. I then called british gas who said it would be an hours wait. with that my mobile rang, its the gas man who had just left. He said he would be with us ASAP , brilliant, I told the British gas colleague on the phone that he was on his way, sorted. What would he say? I can't be in a cold house, Siobhan is so worried, she even suggested I stayed with one of my friends.
Siobhan's boy friend took up the floor boards in the cupboard, the gas man arrived, he took up the carpet in the passage way upstairs and started to take up the floor boards. He heard a hissing noise as he started to unscrew the boards, uh oh...... There was a screw in the pipe. This was done by the previous owners, it looks like we have had a tiny leak for the 3 years we have been here so, not only do they try and kill us with a faulty boiler giving out carbon monoxide, we now have a screw in a pipe. The gas man was brilliant, he got it all sorted out, boiler on, warm house.... Fabulous. What a wonderful guy, my upper hero of the day. There are some really lovely people out there. So, all is sorted for now, I will deal with the ceiling later, isn't a lot of damage but it can wait.

Will there be snow tomorrow? In my little street we haven't had any so if there is, it will be the first, guess who will be told ff for paying : )

Whoopee doo, the pain is back in my shoulder and arm. I don't want to play anymore. Please go away pain, leave me alone. I think I need to get my pipes sorted out as quickly as Mr Gas did the houses!!


Saturday, 9 March 2013

Bad night last night.

Well... what a night, I had a sicky episode earlier in the day, I brought up the anti biotics I was taking. They had only just started dissolving as the casing were seen clearly.
I had a relaxing day, Siobhan has been looking after me. I went to Halfords to buy myself a battery charger, I need one as Halo has a battery that is as fat as a pancake now as she hasn't bee used for so long. Saying that, I have hardly used Livvy either.
I did pop in to see my nephew as well, i haven't seen him for a long time.

I am amazed by how people are so territorial about disabled spaces. I have a blue badge and thank goodness I have because I really need it.
I parked in the disabled bay outside where my nephew lives. An woman came out from the building and looked like she was admiring my car. she was asking about the colour and how lovely it looked. Then she asked if I lived her and I said no but my nephew does.
She said "well, you will have to move soon, my husband will be back in a minute".... what a cheek. I told her I had a blue badge. If there is a disabled parking space, anyone who owns a blue badge can park in it. It isn't a designated space for any individual. My Nephew and I were so shocked. How dare she. I asked my nephew if he wanted to go for a quick spin in the car. He said yes and we got in. I took him for a short ride around the block and when we got back, the space was still free. Oh what a shame, I might just come in for that cup of tea!!
I went in and had a chat with my nephew and his girlfriend, they have two lovely children.






































I stayed for about an hour and said  I had better go. I went out to find a blue car parked in the ambulance space beside my car, no one around. I got in my car half expecting to see a couple irate old codgers after me but no one came out. I hope they learned a lesson today, you have no right to commandeer a disabled parking space.

I got home, made myself a cheese pie for tea which was lovely.
I went up to bed, I have been relaxing in bed, watching TV and chilling out. It is becoming a habit. All has been well all day. I went off to sleep alright, no issues. At 3:30am , I woke up to a cough. M chest was feeling tight. I was sure it was the same thing again. It started to get tighter and tighter so I took a Piriton, I had some beside the bed just incase.
Siobhan came in as she was worried. The Piriton started to work fairly quickly. I did my inhaler too as I still had a tight cough and it would help to open up the airway.
Siobhan stayed with me till it took affect, panic over, all is fine. She decided to stay in my bed with me as she was so worried. It must be so frightening for her. Such a to cope with and she is so young. I am so glad I have her, she has became like my other half.
We all settled down when Stork came in for a cuddle. He looked horrified as he stopped and stared and realised there was someone else in my bed. We had a giggle about that, he eventually settled down too and we got of to sleep only to be woken again at 5:30 am by cat cries, there was a black cat in our house and Stork was not happy. So that episode was dealt with and we all went back to bed. Siobhan seemed happy to leave me now and went back to her room.

She has given me orders, no going out over the weekend, I won't be taking the anti biotics and she is worried that I will pick up a another cough or cold. This latest chest infection is due to a throal infection that seems to be air bourne. I am hoping that my immune system will kick in and do something to help. Until then, it will be GP's on Monday and admittance to hospital.... Yuk, I really don't want to go in but I know i have to get this sorted out before I can move on with any treatments. The saga continues.

Friday, 8 March 2013

No luck with the anti biotics

My lung nurse rang back yesterday, she had been in touch with the chest Dr. He has sent a letter and copied me into it. It is to get an appointment with the immunologist. I was surprised that he hadn't called him considering the urgency of me needing anti biotics before I can have any more chemo. I did remind him that I am a terminally ill patient and can't afford to be on a waiting list, so, I wait for the letter that didn't arrive yesterday so maybe today or tomorrow.
I have decided that I am going to see a different Dr, this one doesn't seem to understand my situation, although he should, as he was the Dr who gave me my mesothelioma diagnosis in 2006 and my TOF diagnosis in 2009.

I took the anti biotics yesterday and within 30 minutes I was feeling sicky, sure enough, I was. I wasn't sure if was the anti biotics or not.
I took them this morning and the same thing happened. I saw the capsule casing so they were starting to be ingested, my immune system has kicked it out. Thankfully I haven't had the anaphylaxis symptoms.

I don't want to be admitted to hospital today, no point, the Dr's aren't around just a skeleton staff, so I will wait the weekend and start the ball rolling on Monday. I really don't want to go in, I will try and get on the private ward if I can. I am so lucky to have private health care with Orange or EE as they are known now. Why can't life be simple?

So, it's back to square one, my lung nurse has been fabulous, she found out a lot of information yesterday and is going to help me to change Dr's.


So for now, I am not going to take anymore anti biotics.

Thursday, 7 March 2013

Live stream of the symposium.


This is the live link for the MARF symposium. There is a lot of very good inforamtion here.


http://www.curemeso.org/site/c.kkLUJ7MPKtH/b.8195849/k.17BD/2013_Symposium_Live_Stream__Watch_and_Interact.htm

Remembering Tony.

My wonderful friend Pat and her family are remembering their courageous warrior, Tony today. It is 5 years since he died. Such a sad loss to them and to many people.
Pat and Tony were very instrumental in finding Professor Vogl in Germany. Tony was going to go but never got the chance. This is were I followed the path he had created. I had to do it for Tony, Pat and their family.
Thankfully, they were right, The treatment in Germany has given me so much time considering I was very limited when I went to see Prof for the first time.
The strangest thing was that I never doubted it would work. My instinct was very strong.
I am sure Tony was beside me the whole time. He has a special place in my heart.




Dr's this morning

I went to see my GP this morning, I was feeling unwell when I woke up, tired and lethargic.
My GP told me to take the anti biotics I have in the cupboard and also prescribed steroids.
I bought some piriton in the chemists just for back up.
If nothing helps, I will have to be admitted to hospital again. I don't want this turning to pneumonia.
I took the steroids and anti biotics when I got home. Hence they didn't stay down. I am hoping this isn't going to be another allergic reaction. Will find out when I have more tomorrow.

My lung nurse, Kate, rang up. She apologised for not getting back to me yesterday as she was'n't in.
She is going to ring around and ask some questions. She said she will call back this afternoon.
Siobhan has been so helpful to me, such a lot to cope with for very young shoulders. She is being very honest and telling me to slow down or rest if she thinks I am doing too much.