Tuesday, 30 April 2013

The end of an era.

I woke up this morning and got myself ready for my appointment with the Dr at St Lukes to talk about pain management. I saw the nurse, I don't know her name, she was lovley, I burst into tears when she asked me how I was and what would happen with the appointment. Poor girl, She took me into see Dr Mary who is lovely, very caring.
Dr Mary asked me what tablets I was taking, I explained that I hadn't taken the Oxynorm as it was affecting my breathing and I was so frightened. She understood and suggested another pain killer, it would may me drowsy as it got into my system. She upped my Pregabalin in the evenings and prescribed Tampentadol mornings and evening, it is a slow release drug.
She told me to stop taking Nurofen as it damages the kidneys and mine are functioning and filtering but not as much as they should be.

She also asked about the fistula, my TOF. I told her it was clicking and I was sticking on food. I told her I felt I needed a dilatation, She agreed and said the TOF should be done first. She was interested in hearing the click, I told her it was louder if I laid down so I laid on the treatment bed and right on queue, it did it. She said it was the TOF causing a lot of problems. Next thing will be to contact Dr G and get started on that. I will speak to Dr D about this tomorrow.
My bloods have dropped again, Dr Mary thinks I may not need a transfusion yet as they aren't low enough yet but as I am so tired and breathless, 2 symptoms that go with it, she thinks Dr D may suggest it.

Dr Mary told me that I need to rest more, think more about looking after me otherwise I will wear myself out. I will listen, it is difficult as there are things to be done, today being no exception so, as from tomorrow, I will have to relax more. Aunty Mavis and Aunty Rose will be happy to hear this as they have been telling me this for a long time.

Dr Mary faxed the prescription through to my GP in the hope it would be ready today. I was happy with the appointment.
I left there and went to pick up my sick note. 3 months off, I hope I am back to some normality by then as I really want to get back to work, I do miss it. I got home and had a call from the nurse at St Lukes, the prescription was with the surgery and I could pick it up today, wonderful.


END OF AN ERA


I had to say goodbye to a faithful friend today, Halo, my lovely little car. I passed my test in 2004 after 6 tries, 4 in 1992 and 2 in 2004. I was so nervous when I took my test, I didn't think I could do it but it just shows what having a good instructor can do. I took 2 tests from January to August 2004. I was so pleased to pass and David, Kieran's dad, who was my husband at the time, bought me Halo as a birthday gift. It was one of the most wonderful gifts I have ever had, next to having my children that is.

I have had Halo for 8 years, 8 years of being able to get out and about and to build my confidence. I can do anything, she taught me a lot.


Last pictures of my loyal friend.




On her way to the yard where her parts will be recycled for other cars. She will be spreading all the love she gave to me. I had a few tears when she left on the truck.
I am treating this as a new chapter, Halo has helped me achieve so much. Livi will do the same.


With Halo gone and me crying into my hanky, I went in doors and remembered all the good times.
I felt like a drive and had to get my sick note into work so I thought I would put on my music loud in the car and drive to work and hand it in. Billy Idol White wedding was playing. Some words fro the song really meant something to me today "it's a nice day to start again" How true is that.
So Livi and I are starting our new adventure together. We went off to work, took in the sick note, went to the Dr's surgery and picked up the prescription, filled it in, dropped it into the chemist, called my friend Chrissy and asked if she was in so I could pick up my boots she borrowed. She was and said would I like a cuppa. 
I said yes, I could do with one, only problem is that she lives at the top of 3 flights of stairs. No problem she said, I will bring it down. So there we are, sat in Livi, having a cuppa and a chat in the sunshine.

I said goodbye to Chrissy and headed home. Siobhan and her boyfriend were cutting the grass. The weather is lovely, Kieran has finished his GCSE History work, I am so pleased. We will wait and see now just how well he has done. I am so proud of my children every day, they are my inspiration to keep going. Bring on the new chapter, Livi and I are waiting : )

Monday, 29 April 2013

Emotional day

 I got up this morning, I slept well but felt I hadn't slept at all, I was shattered. I got myself ready for my appointment today at St Lukes, all on time, organised school for Kieran to be half day, made a few phone calls I needed to catch up on and was out of the house by 9:20am.
I got to St Lukes and told the receptionist I had an appointment, she looked puzzled, couldn't find my name. I took my letter out of the bag to check, I am a dozey mare, it is tomorrow. I apologised and then went off to take the wheel chair back that I hired. I then went to my friend Mandy's house, had a few tears, poor Mandy. She listened to me drone on, Her husband, Dave, very kindly washed Livvy for me, she looks sparkling clean now, She had seagull poop on her and the seagull must have had one mighty meal for what he had left on my car!!

Back home and I had a bite of lunch and then off to bed, I was so tired. I slept for a couple of hours and still woke up feeling I hadn't slept. One of the phone calls this morning was about Halo, my old car. She is still in the garage. I decided to call a scrap merchant after all, I can't get her sorted out, what with being in hospital and not being on top form, she has been neglected. David, Siobhan's boyfriend offered to help me change her number plate and get the rest of the things out of the car. I opened the garage and that was it, I felt a pang of sadness, so guilty that this little car that had given me so much freedom and motivation is going to be scrapped. We got the number plate sorted, I bought one with a dragonfly on that Siobhan had designed and was changing her back to her original one. Why do I feel like a traitor, It is a car, I keep telling myself that but I can't accept it.
I know I will be upset tomorrow when she goes.
I also realised that it is the CT scan results on Wednesday so it is probably the CT blues or Scanxiety rearing it's ugly head.
My TOF (Tracheo Oesoplageal Fistula) is playing up so I will need a soft diet until I have a dilatation which is a procedure to widen the oesphagus.

                                                                   Nearly got it.......


                                                                 ..... Just missed it........

                                                                   
                                                                           ...... Got it!!!

So all in all, a feel sorry for meself day, thank goodness for my lovely friends and family and my kitties who make me smile. Amber did that today. She was playing with my dragonfly decoration in the garden. What a joy she is : )

Sunday, 28 April 2013

My weekend in pictures.

What a weekend, it was wonderful. My two lovely warrior sisters traveled from Barrow-in-Furness on Friday to spend time with me and meet my friends.
They arrived around 6 pm on Friday evening.
We went to an Indian curry Restaurant where we met my friend Chrissy. All of us were tired, Chrissy and I because we have not been well and Tracey and Angela because of their very long drive so it was an early night for all of us.


Curry at the Nimbana, Crownhill.

SATURDAY


We went to Plymouth's Barbican where we had lunch and then made our way to the house that Jack built which has a very small Gnome world. Angela loves her Gnomes so it made her feel at home.



Tracey found a tree to hide in : )


We took the girls for a Devon Cream tea in the 1940's tea shop. Such a quaint little place.


Angela enjoying her scone: )


A hug from my warrior sister Tracey.


After the Barbican, I took them to see the little meso tree, it was planted in memory of those lost to Mesothelioma and asbestos related diseases and to those still fighting and their families. It was very emotional for the girls as they lost their dad to Mesothelioma.


Tracey added flowers for their dad and other warriors. We looked for Ronny's rainbow, wedidn't see one but were sure she and others were around us.





Sitting on the bench by our special tree.


The girls go home tomorrow, I will miss them so much.

A quick visit to see Sharon who I met on facebook but not in the phtsical. It was her birthday and she decided to have a birthday with a cause. She didn't want presents, she wanted donations for the oncology unit in Derriford. Sharon is a breast cancer survivor. It was so lovely to meet her and be able to contribute to her worth while fun.

SUNDAY

 

A last hug for Cher Bear. My lovely Bear who is dedicated to Cher, our beautiful warrior angel from Australia.

Sharing the ADAO award. these girls helped make it possible.


Thank you girls for a wonderful weekend. I really enjoyed it. I got a wheel chair but ended up I didn't need it. I pushed it around and used it more for support. I stopped taking Oxynorm yesterday as the pain in my shoulder has gone, I think that due to the chest infection clearing up, it has eased the pain. The Oxynorm was affecting my breathing so I am pleased to say I haven't taken it for over 24 hours now and am feeling so much better. Still a long way to go but I am doing more. 

Wednesday I will get my CT results and a plan of action. I think the TOF will be sorted out first, an endoscopy and a barium swallow. Maybe radio theray, I will see what my oncologist says.


We did go to the shop on the way home on Saturday night and couldn't resist having our picture taken by a police car that was parked in the garage. The policeman/woman was in the shop so I think we got away with it : )

Friday, 26 April 2013

Booking holidays?

Have you thought about booking a holiday and helping a mesothelioma charity at the same time?
My lovely friend, Andrea, who's dad has mesothelioma is giving a percentage of any sales to a mesothelioma charity. I have met Andrea many times and know how much she wants to help these charities. I have booked hotel rooms through Andrea before and to be honest, it takes a lot of the stresses away from me if someone else is looking for the best deal.


Exciting new times ahead , Travel Link are now part of the innovative and dynamic Travel-pa, part of the esteemed and well respected Independent Tour Operator Sunset Faraway Holidays!
Not only is this great news for us it is excellent news for our clients as this means that we now have access to very competitive price from the widest range of tour operators in the UK aswell as our own in-house, Sunset Faraway Holidays, so if you are looking for anything from a short UK break to a round -the -world multi-centre trip/cruise or anything in-between, please give us the opportunity to quote before you book elsewhere. 
You will benefit from expert advice, fantastic deals, and also help us in our personal goal to raise funds and awareness for Mesothelioma and Lung Cancer Charities. 
Every booking we make we aim to make a donation to a nominated Charity of the month. 

Contact Details : www.travel-pa.com/travellink 
Andreab@travel-pa.com
Doriss@travel-pa.com 
or tel 0191 2735004



Ambassador for MKMRF

I had a call this morning from the one and only Chris Knighton MBE. She founded MKMRF (Mick Knighton Mesothelioma Research Fund).
Chris's husband, Mick, had mesothelioma, she has worked very hard to get her charity noticed. She has raised over £1,0000 for the charity and picked up an MBE last year for the work she has done in the mesothelioma community. It is so well deserved.

http://www.blf.org.uk/News/Detail/Chris-Knighton-receives-MBE

                                                Chris picking up her MBE from the palace.


So it was a great surprise this morning when a cheery voice on my phone asked me if I would become an ambassador for MKMRF. Of course I said yes. We are, after all, rowing the same way, towards the same island and coming together is important.
I am so proud to be asked and hope I can do it justice.

The Mick Knighton website is below, Chris has snowdrop funds on her page were families can raise funds in memory of their loved one, this makes it a little more personal.
.
http://www.mkmrf.org/about-us/snowdrop-funds/

Thank you so much Chris and i hope I can fulfill my obligations.

Out and about

I went to my friend and fellow warriors, Ann and Bill's house for a coffee today, I picked up warrior Sandra and met another warrior, Ann, the colonels wife and Helen, also warriors diane and mike too. We chatted about how the support group could move forward in between sandwiches and a good cuppa. Ann layer on a lovely morning, it was s good to see everyone.
I got home and went straight to bed, I was shattered.
I must have slept for a coupe of hours, I woke up when Kieran got in from school. He had another good day which was lovely to hear.
I rang motobility which is a shop in the city centre that hires out wheel chairs and scooters. I am hiring one for the weekend as my warrior sisters are arriving from Barrow. I am so looking forward to seeing them. Angela and Tracey make me smile with their antics. We kidnapped one of Angela's mgnomes and sent him around the UK, pictures were taken and an event was created. I made a video which I must out on here at some point. I have never seen Angela so quiet.
I don't want anyone panicking about the wheel chair, I am fine in myself, my lungs are letting me down at the moment although they are getting better. I know I won't be able to walk very far so getting a wheel chair was the sensible option. Angela is known as Banjo in our community so I think I will be well and truly Banjo'd over the weekend.
Tracey and Angela will be returning on Sunday so I want to make the most of them being here.
Kieran is looking forward t a water fight, not sure how that's going to work but he will have fun.

I am looking around at sewing machines at he moment, I have asked advise from warrior Faye who is a fabulous seamstress. It will be a brother, just have to find the one I am looking for.
Right, I am signing out now. I took 5 ml of oxynorm for my shoulder pain and theain broke through it so I have topped up with another 2 1/2 , supported by St Luke's, I will see them next week, they have been brilliant. I am going to have a lot of procedures going on over the next few weeks, another sick note for work. Soon it will all be behind me and I can get back to work, hurry up, I can't wait!!

Thursday, 25 April 2013

Update.

I went to see Dr D this afternoon. I didn't do the stairs to his office, that is my Everest at the moment and I have put the challenge on hold.
Siobhan and I went into his office, as usual he greeted us with a smile and knew I had been in hospital. I explained that I had a very bad chest infection which he knew had been festering for months. It got to the point where it had to be seen too and with me having aspirating as well, it was even more important to get it sorted out.
When I aspirate, the fluid goes on my lung and not down my gullet as it should. this is a lot to do with the TOF, Tracheo-oesophageal fistula. I have a tube connecting my wind pipe and foodpipe.

Air bubbles at the site of the hole cause fluid to spill over into my windpipe, as it is all so close together, it is difficult to breathe when this happens. It has to be the most frightening thing ever, not breathing, I hate it. I fight it as I take deep breaths to keep some oxygen going in and to keep my SATs up as I know this is important. That is foremost in my mind when I have an attack.

This happened last week and I was admitted to hospital. I am sure I need a dilatation, this means I need my oesophagus widened as it has narrowed due to the TOF. I get a lot of reflux with it as well. It is all so complicated.
I told Dr D I had been in touch with Dr TOF who recommended a barium swallow and an endoscopy, to which he replied I should get a CT scan done first so we can get more of an idea what is going on. The clips Dr TOF put on have gone, fallen off. The TOF hole looks smaller, I do have something happening inside as I click when I breathe, this is clearer at night when I lay down, It is so loud that I can record it to play it back. I think it is a blockage or could be something overlapping the hole that is being sucked towards it when I breathe in and away when I breathe out.
Why oh why does it all have to be so difficult, why can't anything be straight forward?
So, I will wait now until next week when I have another appointment with Dr D to discuss our plan of action.
We have Dr Dp, Dr TOF and Dr D all ready to liaise with each other which is great. I want my lungs working properly again, this has been the closest I have got to feeling like this is the end.

apologies, I am going to rant.......

I have felt so upset about it, especially losing my chemo buddy and watching as her dear children try and make some sense of losing their mum while they carry out all the arrangements, It has hit home a lot. I miss my friend so much, I would have chatted to her about how I felt and I know I would have got some good feed back from her. How selfish am I to want her here for me, I want her here for her children, they are heart broken, left to pick up where she left off. They are strong like her, I know they will get through it, I wish I could do more but I am such a helpless case at the moment, I have to rely so much on my baby girl, she doesn't complain, she gives me the odd telling off if she thinks I am not thinking straight. I am so glad to have her but it should be me taking care of her. She made soup today and my evening meal.
Is it not enough that we have all this to deal with and then a bit more thrown into the pot for good measure?

Why is it always the same people who get life's problems. Not just cancer but dear Mavis and Ray dealing with his heart attack, Tess, like me, finds something to go wrong with most of her treatments. Isn't it enough just having mesothelioma, an incurable cancer, a pain in the ass, a bastard of an illness. I don't get it. I am not saying I want someone else to have something, I am saying leave us the F*@k alone. Let us live what we have of our lives and let us be happy. All i can say is that cancer makes you a stronger person, it brings out the fighter, the warrior, the hero. Samantha left a comment about Kathy, my wonderful friend, describing her dressed as Bodicea, Yes, I can see it too, a lady who held her head high until the very end, who cancer never did take, her spirit was too strong for it. I hope I can be half as brave as Kathy when the time comes, I am hoping it isn't now, I am not ready. I don't think I will ever be ready.

Rant over...... Back to the fight. I have decided to mark my 7th anniversary of meeting Theo with a tattoo, I want a dragonfly and to have it even more special, I want Siobhan to design it. I asked her how she felt about me getting a tattoo and she was alright with it. I will be very proud to wear it and to make it even more special, my lovely friend, Denise who passed away a few months ago, has 2 daughter's, Lou and Kelly. Lou has a tattoo parlour in Weymouth, What better way to get it done but the warrior way. I will be so proud to get it done by a warrior and to have it created by one. Perfect, this will be happening in October, another Milestone, a long way off yet but I hope I get there.

My breathing is not too bad at the moment, I can't walk very far, I find sitting forward much easier on the lungs than laying on my back. Lying back seems to create a lot more weight, I struggle more. I had to sit up while all the scan stuff was being done. It is mainly like it if i have been exerting myself, a short walk will do it.
So I wait, again, to find out the next step.

Congratulations to Tess who had a great result with her scan. 25% shrinkage with her tumour, such wonderful news after such a heart breaking few days, I am so pleased for Tess as she has had a tough time of it recently, well done girl, I am so proud of you.
Well done also to Steve W who seems to be doing well. All the CT scans will be starting again soon and I really hope they are all good ones, also ian who is seeing his dr today, i hope its good news, come on Mesothelioma, do the right thing and give us good news.


                            Dedicated to all those fighting cancer and those who have heart ache.



Wednesday, 24 April 2013

What a morning.

I am back!!!! no choice this morning, busy little bee. Kieran went off to school, he was off to his college today for the taster day. I got myself dressed, sorted out the kitties, had a lovely coffee from my coffee Fairy, Jan C.... thanks Jan.





Kieran called me, he had missed his connecting bus, He had to be at school for 9:05am, it was now 8:30 am. He had a think about what to do and decided that me picking him up and taking him to school would be the answer.
I got in my car, got so far and then the traffic kicked in, it was solid right through from Mannamead to Mutley. The school run, people going to work, very busy time of day. I told Kieran to meet me at the car park in town. I eventually got there about 9:10 am. Kieran got in the car and off we went to school. 
We got held up again by traffic so a sneaky through some little roads quickened the journey up. By the time we got to school it was 9:32 am. The taxi had gone, typical, it was late yesterday.
So it was off again to take Kieran to the college. We got there alright and he saw his teacher outside. ..... phew.... sorted. Now to get home, Me being a bright spark, thought I would get some petrol on the way home. I went to the garage, filled the car and went into pay, I got to the cash desk and thats when it hit me, Siobhan borrowed my bank card and I forgot to get it back. what am I going to do..... I spoke to the cashier and explained my problem, thank goodness they trust me, I go to that garage a lot. She said i could go back home and get my card, so there is me, off home with stolen petrol in my car. If I don't return I will end up on crime watch.
I got home, got my card and off again. Up to the shop and paid for my goods, right, home and a well earned cup of coffee.


Tuesday, 23 April 2013

Mixed emotions.

It's a week of mixed emotions this week, Dear Mavis, my lovely friend and warrior sister had some not so good news about her mesothelioma. She has the same as me, meso in the right fissure, this is what is causing the pain inmy shoulder. Hers has slightly advanced. Mavis being Mavis will dust off her feathers, like we all do and fight again but the next few days she will go quiet and contemplate the next battle steps. We are all behind her as always. Love you Mavis, I will help you up when your ready me friend and walk beside you x
The other side is our warriors sister, Heather, who has great news, no cancer seen!!! this is wonderful and gives us all a boost. Well done Heather VSJ so proud of you young lady. We are both survivors from 2006 so I hope we can continue this journey together, building up our years behind us.

Me, I am doing much better than I was, my breathing is getting better. the pain kicked in last night, in my shoulder, well 2 am this morning actually. Dear Siobhan must have seen the blue air coming from my bedroom, yes, I was in top form, f'ing and blinding at the pain. It eventually went after I sat up and waited for it to pass. I told her to go back to bed, I was fine. I am complaining so know I am doing well. I didn't take anymore Oxynorm as I had taken 5 ml 2 hours before.
Sharon from the St Lukes Team rang to see how things were and said I could have taken another 2 ml if I was in pain. I am seeing the team on Monday which is good. Because my breathing is getting better, the pain seems to break through so all positive. I saw mt Dr yesterday as well, I have a course of steroids to continue with which I am pleased with as this has helped a lot. I have been coughing up a load of ectoplasm which, thankfully, hasn't any signs of green in it.

The weekend is going to be fun, My Warrior sisters, Angela and Tracey, from Barrow are arriving in Plymouth on Friday, it will be wonderful to see them. I am looking forward to some hugs and fun and them meeting Siobhan. Kieran wants a water pistol fight with Angela, He has been waiting for this moment for a long time.

I have been watching the great sewing bee and getting the bug again. It has insprired me to get my sewing machine out and make something. I have decided my first thing will be a jacket for Siobhan, she will design her material, so exciting.
I can't wait to get started.

I have an appointment with Dr D tomorrow afternoon.  I had a call from Dr TOF last evening, it was so ggod to hear from him, he is such a great Dr. He looked at my scan pics and said that my meso patch in the top right fissure is the same height as my TOF so it could be causing problems with me eating. I am now clicking when I breath, I can only like it to a pipe with air going in and out, it has a tarpaulin beside it and the tarpaulin is being sucked in when the air goes in. the hole (TOF) seems smaller although still open. He has suggested a barium swallow and an endoscopy. He has said he will liaise with Dr D and Dr Dp who is the gatsro Dr in Derriford. What a team I have behind me : )


This might explain my TOF a bit more. I am figure 4 the 4% of 100 babies born with TOF have this. Richard, my son was born with figure 2 84%, this is the most common form of TOF. Without the operation to correct this the day after he was born, Richard would have died of starvation, Malnutrition so thank goodness for Dr's like Dr TOF who are so very dedicated to changing this. TOF has moved on a lot since even Rich was born, Dr's are learning new techniques all the time and I was happy to put myself forward to try the clips. They didn't work, they seem to have fallen off. Trial and error. How else will they learn about this. the problem with my TOF is that it can't be seen by looking down the gullet, it is around a corner. A difficult one but one that may be accomplishable. I'm not giving up and I know Dr TOF won't. Onwards and upwards.

Love and strength is sent to all fighting this rotten disease and love to those in pain from losing their hero's.

Sunday, 21 April 2013

Kathy

Another wonderful warrior fell asleep last night.
she gained her angel wings and so many times was near to wearing them but not Kathy, she picked up and fought back. Kathy had breast cancer, 10 years of a battle that cancer never did win. A valiant and courageous battle that she was in control of until the very end.
She loved her children, Hanna and Dan so much,  She often talked about her pride in them. Often going through her illness with them as her first thought and how they were coping. A true warrior, fighter, survivor, a spirit unmatched. Sorry cancer, you will have to wait for a victim, Kathy isn't one.

I am so very proud of her and hope, when the time comes, I can have half the braveness this lady showed. Today is a strange day as although I am upset, I am proud to be fighting. Kathy showed me that the battle would finish when I am ready, she showed me how it should be done and how cancer was the furthermost thing from her mind. Secretly her heart was breaking, I can imagine that she wouldn't have wanted to leave but if she had to she would go her way, which she did.

 Kathy, my beautiful cyber warrior. We shared many special moments chatting on the phone, talking about our children who are of similar age and what the future held for them. This picture was us celebrating the end of Kathy's chemo, we couldn't be together so we did the next best thing. She was a absolute joy to know, always positive even when her own life was in turmoil, she got through her issues with the pride and dignity she always showed.

 What more can I say, I love you Kathy, I admire you and I know when my tears fell on my cheeks for you last night, you would be in front of me telling me "chin up, fight back, don't cry for me, put all that energy into fighting back or your backside will be black and blue from the swift, hefty kicks I will give you if you don't"

I fight on in your memory beautiful lady, For you and every other warrior who gains their wings. We had a conversation a few weeks ago about dear Kathy going to hell, I said I would meet her there. she said we would clear the place as they wouldn't be able to cope with us : )

This is one lady destined for heaven. She has touched the hearts and souls of so many people and will live within them for a very long time.

My thought are with Hanna, Dan and their families right now. A new journey with their beautiful rose waiting in an invisible garden, she will be watching. Go fourth and make her proud.

Hanna and Dan, you are a credit to your mum, stay the way you are, you are both so brave and she would not have left if she didn't think you could cope with out her. I am always here for you if you need a shoulder or an ear, as she was for me, it's the least I can do. Sending you both love and also love to Lainey, Kathy's friend who she adored,  who, I hope will be a new friend to me.  x x x x x
Love and strength to all of you x x x x


I felt I should share the message below, this is Kathy, this is her strength.... such a wonderful lady.

"Hi cancer buddy! 
How are you doing? I actually think we kind of live parallel lives you and I. My cancer is back, yours is back but we're both strong birds so we will deal with it. I'm not giving up...not for a long time so I am pretty sure you feel the same way. You're an amazing woman Debbie and I truly feel that we have an understanding about this life that we've been given. We are fighters, survivors and united in our belief that positive thinking can overcome the hardest of trials. I love you to bits. Lets do this together...we'll give cancer a right good arse kicking! xxx"


Goodnight my beautiful friend, I will miss you so much. I know you are here and watching every move I make. I won't let you down, cancer will get a double kicking for me now. We are still in it together.
Love you always and forever x x x x

Phil

It was with great sadness that I heard that Phil had gained his angel wings.
Phil and his lovely wife, Marilyn have been coming to the Mesothelioma South West Support Group since it began back in 2010. They are a great support to the group so it was awful to hear the news.
We have all become such a close family, losing warriors really hits home.
Marilyn, his wife, had been a tower of strength to Phil.

It was a pleasure to have met Phil, I wish it could have been under different circumstances, saying that Mesothelioma has allowed me to find and friend some of the most amazing a brave people in the world, Phil and Marilyn being 2 of them.

I added the meso tree with the roses as I can't get to it because of my problems at the moment.
It is added in memory of a wonderful warrior and friend who showed courage and dignity all through his illness.
You will be missed and we will all do our very best to look after Marilyn.


For Phil x x

Thinking of Phil today with love.


I am sure I can say, on behalf of our support group, we send our condolences to Marilyn and her family and hope she can use the groups love and strength to get through the next step of the journey. We will be with you, holding your hand in spirit as well as the physical. x x x x

Saturday, 20 April 2013

So much pain.

it was such a lovely day yesterday, the sun is shining, a gorgeous day. I pulled up one little weed in the garden and got caught by Siobhan. she was cross with me, told me that if I want to go back in hospital them to carry on pulling up weeds. I think I got the message : )
I decided to take some pictures with my phone. I am quite liking photography, I had an arty moment at William and Ann's place.

I went to bed last night and all was fine, I took my usual tablets, Pregbalin pain killer and paracetamol.
All was going well until my shoulder started to become painful again. I took 2 1/2 ml of Oxynorm.
The oxynorm did nothing so an hour half later, about 2:30am I took another 2 1/2 ml. Again, nothing happened. The pain was much worse that it was before. It got so bad that I came down stairs and called the 101 line, it was the NHS helpline previously. The lady on the phone was lovelt and passed me through to a nurse. The nurse was wonderful too and advised me to call St Lukes which I duly did.
I was in tears with the pain, Elsie, the nurse at St Lukes advised me to wake Siobhan up and let her get me a cup of tea and sit with me. I don't like waking her but Elsie said to do it and what would Siobhan say if I didn't. I knew she would be cross. Elsie told me to up the oxynorm to 5 ml as the 2 x 2 1/2 was not working and not even showing any side affects.
At about 4:30am I took 5 ml of oxynorm, had a cuppa and a chat with Siobhan and waited until the side affects started. Elsie advised me to take nurofen with it, it all worked, thank goodness.
Siobhan and I got to bed about 5:30am I think, I went straight to sleep, I was woken up with a hug and kiss from my Prince charmings, Kieran and Stork, Stork is more of a paw in the eye, a "where is my breakfast" paw in the eye!!!
Kieran fed him and I went back to sleep. I must have woke up about 11:00am. I am shattered now and will rest all day. Kieran has gone to his dad's and Siobhan out with friends, it is a beautiful day so I will be hoining my cats and having a good snooze : )







Sad news



One of our support group gained his angel wings yesterday evening.
Love and strength to his family.
Such a sad loss to all who knew and loved him x x x


Friday, 19 April 2013

Back home and rested.

I came out of hospital on Monday and went back home briefly to repack my case. It was lovely seeing Siobhan again, she has done great at looking after things while I have been away.
She has done well, the cats were looked after, they are confused with everything. I repacked and went back to William and Ann's house. They have been wonderful, I stayed with them for a couple of days, their house and spare room was very welcoming. I have been very relaxed there, they have looked after me so well, Ann and William give so much support to our group. William has Mesothelioma himself and I think it helps both of us spending time together. Love is sent to Phil, Bernard and John who have been having issues at the moment. We are thinking of you all. Love to their other halves too, Marilyn who is a little trojan, such wonderful carers.

I have a blip at Ann and William's as my TOF is playing up at the moment. I aspirated which has set me back a bit. I called my GP and arranged a phone consultation. I asked for some steroids, he was happy to oblige.
When William dropped me home, I drove Siobhan to the Dr's and picked up my script.
I took my steroids yesterday, I can feel the difference today. My appetite, which has been non existent for a few days, has started to creep back. I have the nibbles.....YAY!!!!

It was so good to be back home. Storkie Boy didn't leave my side, Kieran and Siobhan are so very helpful and Siobhan's BF has been a great help too.
I am going to take it real easy. I can feel the difference since I started the steroids. The TOF is being looked into as I am having problems. I will contact Dr TOF and see what he says as well.


Storkie Boy, all comfy on his mummy's bed.


Bench and stool at the mesothelioma tree, Saltram Park, Plymouth.



Great Benches, Thank you National Trust. An Oak leaf and an Acorn, so lovely.


        

Thank you  to everyone who supported my family and I, there are some wonderful people out there. Lovely to see so many lovely faces while I was in hospital. It helped so much, Special thanks to William and Ann who have been fabulous. x x x x