Wednesday, 31 March 2010

The wanderer returns!!!

Well I'm back,,,,with a new medical condition.... It had to happen didn't it!!
Rich was born with tracheo-oesophageal fistula at birth. It means that his wind pipe was connected to his food pipe. He had a major op the day after he was born to repair it. The next 7 years were very difficult but Siobhan and I got through it. He would choke on his food or drink and need to sick it out. Little Siobhan was 3 years old and had made herself bin lid removal officer. Every time he looked like he was choking, she would remove the bin lid so I could put my fingers down his throat and make him sick up the offending piece of food or drink.

21 years later..... I have the same condition!!! The Dr's have checked my 2006 CT scan....and its there!!

I was absolutley blown away when I had the barium swallow and the radiographer showed me the images. I shrieked, "thats tracheo oesophageal fistula!!!"
I will be adding a picture as I managed to pursuade the Dr to let me have one.

With every thing else, I have had acute pharyngitis. It is a throat infection. I lost my voice for 6 days, my oncologist didn't know I was in hospital and started me on steroids, which he had already advised me to take if I was coughing too much, the throat is a lot better but the larynx is still swollen which means I am still coughing a lot. I have been told by my friends and daughter to try and slow down on all the work I do for Meso. By the way, my meso is stable.
Just thought I should add that little bit... : )
I have had a good sleep as I got out of hospital at around 6:30pm and have woken up at 11:00pm. I am having a hot drink and then back to bed.

Many thanks for all your good wishes and a very special thank you to Suzi for the card and to Pat for the pink champagne..... People are amazing x x x x

Wednesday, 24 March 2010

Siobhan here.

Hello everyone, this is Siobhan (Debbie's daughter). My mum had to go into hospital late last night, she hasn't been well for the past couple of days and it got particularly bad yesterday so my brother Rich called the ambulance and went in with her while I looked after Kieran. We don't know exactly what is wrong at the moment (could be pneumonia again or maybe some effects from the radiotherapy?) but we went to see her this afternoon and she is okay, still being sick quite a lot and has lost her voice as a result but I'm sure she'll be home fairly soon. As you probably know if you read the blog regularly, my mum keeps getting chest infection after chest infection so I'm hoping that the doctors will be able to get to the bottom of this now so things can get back to normal somewhat.

Thank you to all of our friends who have offered their help, it's appreciated. I'll update with more news when I have it.

Tuesday, 23 March 2010

Thank you Linda and Steve.

I had a lovely cup of tea with one sugar sent to me via email from Linda and Steve. Thank you so was lovely.
I had mentioned it in a previous blog while I lay in bed and didn't want to get out. It was such a lovely thought, maybe, someday we will have one for real.

Congratulations to Pat who has had a 10% reduction after seeing the Prof about her mesothelioma.
She returns to Frankfurt in April and I am hoping it shrinks even more.

I am feeling a little better, I went to my Dr's again this morning and was told the antibiotics, doxycycline I was given yestreday can make some patients sick. The new ones seem to be staying down.

I hate Mesothelioma!!!!

It is 2:30am, I have had a really awful night so far. 2 hours of throwing up which created a sore throat and I couldn't have a drink of water because it would manifest itself in front of me. I have eventually settled and have been lying in bed waiting for some kind soul to bring me a nice cup of tea with one one came : (
I came down stairs and did it myself, I didn't want to wake the children as they are all very worried about me. Kieran isn't going to school tomorrow as he is so worried.
I had a few tears as I thought about what my dad would do now...he would have got me a cup of tea. It brought back wonderful memories of when I lived at home, pre-children and relationships, He would bring me up a cup of tea and some biscuits as an alarm call....wonderful.
I am going to have my cup of tea and try and get some sleep.

Monday, 22 March 2010

Dr's again!!!

I took my antibiotics this evening and within an hour I was bringing them back up. This went on for over an hour. 3 worried children are watching my every move. Rich rang NHS direct while I was in the bathroom. They have determined that it is the antibiotics and that I shouldn't take anymore so it looks like I will be returning to the GP surgery tomorrow. Not sure what they will suggest. When this happened in August last year, I ended up having them intravenously.
I am so fed up with this chest infection now. I left a message for my oncologist but haven't heard back from him yet. I will try again tomorrow.

Dr's again!!!

I have had the rigours again at the weekend. I have a sore throat and cough with a lovely sprinkling of muck.....yukky yuk!
I am not sure if I am right but I think that since I have had the radio therapy, my lungs are weaker than normal.
I am hoping I can get this all sorted out as now I am really cheesed off with it.
I am off work for another week. I am also off to Park Attwood next week to have an intravenous treatment of mistletoe.
Kieran is off on a school break next week. He has parents evening this week and I am sure he is doing well at school. All his issues seemed to be resolved now, he had a chat with someone from Jeremiah's journey this morning which he seemed to get through very well.
He will be seeing them again in April.

Sunday, 21 March 2010

Mr Rigours returns!!!

Well, I was happily going to sleep this morning. I have had a bit of a cough all day which is a little mucky and a small amount of pain in the right side again. I know now it isn't Theo playing up. Mr Rigours has decided to play up instead!!!
I have been so cold, shivering and shaking, feeling sick, tired, I needed to go to the toilet and am prompting myself to get out of bed and get it over with.
By the time I got back to bed, I was full on shivering. I pinched Kieran's duvet, he isn't here by the way, he is with his dad, put on my heated blanket and my dressing gown...what a site!!

I have had a lovely day with my friend, Tina. We went to Torquay to trade in her old car and get a new one.... Mr Rigours decides to spoil it.
Looks like another trip to the GP, I just want to get rid of this damn chest infection!

Friday, 19 March 2010

catching up with friends.

Jeanette and I had lunch at the Brook in Plympton.

Jacqui, Lyn, Myself and Wendy had a lovely meal at the fishermans arms.

I went out last night and met up with some friends for a meal. I have known Wendy, Lyn and Jacqui for over 23 years and it was good to catch up on what we had all been doing. Lyn is getting over shingles, She looked really well. I hope she cotinues to get better.

I went in town with my friend, Carolyn this morning, we had a coffee and a chat, then it was off to lunch with Jeanette, my Frankfurt buddy. She is looking a lot better. Thankfully she didn't have cancer. she just has to find out why she is losing so much weight.

I am still tired but a lot better than I was a few days ago.

Kieran will be seeing someone fro Jeremiah's journey on Monday and Siobhna and Rich will be speaking to St Lukes.
I hope it helps them as they haven't spoken to anyone about how they feel about all that has gone on.

Thursday, 18 March 2010

Much better today.

I had my first meal last night, first since last Saturday, Omelette and chips and it was delicious.
I have upped my mistletoe, 30mg one day and 20mg on another.
I am going to Park Attwood to have an intravenous treatment as it has stopped reacting with my immune system.
I am going out this evening with some friends which I am looking forward to.
I will be getting ready to return to work soon as well. this is something I have been looking forward to but also quivering about as I hope i haven't forgetten what to do!!

Wednesday, 17 March 2010

All is fine!

I called my GP surgery today. I don't have an iron deficiency which is good. I do have some problem with electrolyte. I have had a look on the internet and would gather it is because I was not keeping my meals down. I do feel slightly better today and hope tomorrow it picks up a bit more.
I am relieved to know all is ok. If I can conquer this tiredness, all will be well.
Thank you to all of you wonderful people who took the time to email me. I really do appreciate the support.

Tuesday, 16 March 2010

Absolutely exhausted.!!

I had a visit from the local hospice today. My representative thinks I maybe physically exhausted and is going to try and get me a couple of days rest at the hospice. I am still feeling very tired. It doesn't seem to have shifted at all. I am managing cuppa soup now but am taking things easy as I know I need to eat but not get to over zealous about it.
Kieran is a lot happier at school. He will be having a chat with a lady from a childrens cancer charity next Monday. He is enjoying school so much that he told me he wished school was open at weekends too as he liked it so much.
Siobhan has finished her dissertation for her college work which I hope has took some pressure off her. Rich, well....he is Rich....always fun and keeps us all smiling. He still needs a job though!!

Report from Dr D.


CT scan thorax and upper addomen.
Comparison is made with the CT of January 2010.

I am pleased to say that the bronchi-centric nodules that are present predominately in the right upper lobe show some signs of improvement compared to January. This would be much more in keeping with slow to resolve infection more that lymphangitis. Remainder of the lungs are unchanged.
The internal mammary nodes seen high on the left has increased in size. (location- 395.1)
The remainder of the mediastinal and disease is stable or slightly smaller. The changes at the left base is stable. The borderline nodes seen and coeliac axis and porta hepatitis are also stable.

Improvement in the appearances of the nodules are seen predominately in the right upper libe in keeping with slow to resolve infection. The mediastinal disease and changes at the base are stable.

Monday, 15 March 2010

Blood test again.

My gorgeous friend, Tina took me to the Gp's this morning. It looks like I have a very low iron count. I had a blood test and will get the results very soon I hope.
I am sat in the garden with my Mac writing my blog. It is a gorgeous day. I am going to rest today and hopefully start some treatment and then....look out world.!!

Tina as been discussing going to New York for a weekend, I think we are going to do it.
Watch this space!!

Soooo tired!!

I woke up to get Kieran ready for school this morning, the sun is shining, its a beautiful day and I feel like I haven't slept at all. I am not keeping anything down so have had a couple of crackers and my essential tablets for breakfast. I am so tired that I don't think I can drive my car.
My good friend, Tina, is coming to pick me up as I have a Dr's appointment at 11:30am this morning.
I don't honestly know what is wrong with me. I felt wiped out and sicky with the pneumonia I had in August last year and I still have a chest infection. I am a little more breathless, but not much more than usual.
I have had a shower and feel like I have done the ten tors!! (anyone who doesn't know what the ten tors is, its an event that is done across Dartmoor, a tor is a rocky hill.)
I am hoping it is easily remedied.
I will add a blog when I get back.... thank goodness for great friends x x x

Sunday, 14 March 2010

I hate mesothelioma!!!!

I have just had a chat with my beautiful daughter, she is having a bad time at the moment, so down hearted.
I hugged her tightly and told her how much I hated Mesothelioma and what it is doing to our family. She burst into tears, this part of the journey is the hardest.
She said she thought it was unfair that I had this disease and that I shouldn't have to go through all this. I told her there were negatives but try looking at the positives, look how many people are being helped by the Prof. I think she understood but it doesn't make it any easier.
My lovely dad always told me that life was mapped out in front of us and what we would do was already planned. I believe he was right.

I do think we are all relaxing from the good news of the cancer not being in the right lung and we have sat back and then BAM!!!! here comes the aftermath...... Stress....!
We all are in need of some counseling which I am trying to arrange.

Theo, stop messing with my head and get back to Frankfurt!!!

Happy Mothers day.

Happy mothers day to all my mummy friends. Special happy mothers day to all meso mums and to my friend, Gina, who is like a mum to every one.
I went out to lunch with Tina, one of my very best friends, and our children today.
It was wonderful, very hectic!!
I came home and have felt absolutely wiped out. I can't keep anything down and am so tired that I feel I could fall in a heap.
I can't remember ever feeling this tired. I am sure it is to do with the chest infection and I know I need to try and slow down but being a busy mum, I have no choice. Mum things still have to be done. Kieran's dad is very good, although we are divorced, he is always there for Kieran and loves him to pieces.
I am going back to the GP tomorrow as I can't keep the anti biotics down, whether it is that that has done this, I have no idea. My memory at the moment is terrible.
It may all be connected to stress. Hopefully I will find out more tomorrow.

Saturday, 13 March 2010

Chest infection starting again.

The last 2 days I have felt absolutely wiped out. Last night I had the riggers again. I was so cold, I had 2 duvets, dressing gown, pyjamas and a heated blanket on and I was still cold.
I am feeling so tired. I was going to go out with my friends tonight to celebrate my good news but have decided not to go as it will be cold out and I don't want to add to this infection I have.
I want to get myself back up as I am taking the children out to eat for lunch on Sunday with my friend, Tina and her family. I feel like I want to get away to the sun, a couple days away from everything. Family commitments make it difficult. I am going to try and do something though.

Friday, 12 March 2010

Mr Collins.

Condolences to the Collins family who have lost their loved one to Mesothelioma.
As always, Mr Collins will be in the hearts of all meso warriors who are fighting to change the way mesothelioma is perceived.
This should not be happening to any family, why is it still being allowed to continue.

Thoughts and strength are sent to the Collins family at this very difficult time.

Wednesday, 10 March 2010

Good news!!!

Well done to Barbara who has had her second treatment with the Prof, He said her Meso was drying up and not spreading.

Also to me, my right lung does not have disease in it. The abnormalities are due to my chest infection. I will post the report later.
My oncologist told me that it was my determination and fight which has meant I am still here today. I have a Cd to send to the Prof with the report.
I am putting in for PCT funding anyway for any future treatment I may need with the Prof.

Tuesday, 9 March 2010

Reg Vaux

It is with sadness again that another mesothelioma warrior has passed away.
I have been in touch with Dorothy, Reg's wife for a while now. She has contacted me and said Reg passed away last week.

This is such a cruel disease. It rips families apart and leaves a wake of devastation.

I would like to send my condolences to Dorothy and her family at this very difficult time.

Another star will be shining bright and Reg's memory will live on in the hearts of all mesothelioma warriors as we march forward to find a cure for this terrible disease.

Monday, 8 March 2010

Mark's Granda

I have been in contact with Mark from Belfast for a couple of months now. He is a young lad who's Granda, as he calls him, has mesothelioma.
Sadly his Granda passed away last night.
It is so sad to hear more of this news. Why does it have to happen. This young lad was trying to find something to help his Granda but never got the opportunity to see if anything would work.
Mark's Granda is up there with all Meso warriors who have passed. He will be on the shoulders of those who are still fighting for a cure.

I am sure I can say to Mark that all at mesothelioma and me and all the readers send their condolences to him and his family at this very difficult time.
Another star will be shining bright watching over Mark and his family.

More antibiotics.

I saw my GP this morning and have got more antibiotics for the chest infection I have. It is taking an age to get rid of this one.
Tomorrow morning I am going to Kieran's school. He seemed much happier today, he was impressed to be chosen to go swimming with the school. Only a selected few have been chosen.
I hope this is the turn around for him and he starts to enjoy school again. Swimming will definately be good for his back.

I am going mad...I am sure!!!!

Kieran has gone off to school this morning. He has a heat patch on his back. He was very concerned that everyone could see it and they would laugh at him. I have told him it can't be seen. Also told him take the pain or wear the patch. He decided to wear it.
I got him on his bus, started to write all the diary dates and looked at the Tuesday diary and saw 9:00am school....... FREAK OUT!!!! I grabbed my coat and bag, headed for the car and then realised, it's Monday today!!! What a numpty I am. My head is spinning with everything, school, children, me, Theo! I have an appointment with my GP this morning which will sort out the antibiotics and tomorrow a blood test to see if the reason I am so tired is the menopause or thyroid. Isn't life grand??

I have ANOTHER chest infection. I am going to contact Park Attwood as the mistletoe is giving me very little reaction. That is probably why I have had infection after infection.

The weekend was great. Kieran and I went to the station at the weekend, we then went to see my friend, Carolyn. After that we went to see "Alice in wonderland" with the gorgeous Johnny Depp, and then something to eat. Kieran was most perturbed to be eating pizza for tea as well as lunch. I told him if he didn't eat it that would be fine but I wouldn't be doing anything else.
He ate one piece!
I got a call part way through our eventful day from my friend, Tina, to tell me what time she was picking me up. We were booked to see a band called Idlewild that evening. It was one mad rush to get back to my house, drop Kieran off and jump in Tina's car.
I managed it though and the band was great.
Phew...... It had been a good day, very busy but good.

Saturday, 6 March 2010

Dr's and lunch yesterday

I went to a Dr with my friend yesterday morning. She needed a little support, all went well.
Afterwards we went in to the city centre for a coffee before I was off to see my GP. I have been feeeling very tired in the afternoons. I think it is the menopause, thyroid or probably just being 50.
I am going to have a blood test done to check my thyroid and menopause.
I also asked him to refer us to a councillor at the locat St Lukes cancer hospital. I feel we all, as a family need it.
After that I met Ali for lunch. It was a beautiful day, sun shining and I think it makes every one feel better.
Kieran came back home yesterday. He is still saying his back is sore. I got him some heat patches, he said it worked, hooray, we have found something that stops the pain!!!
He will be going back to school on Monday.

Today we are off to see Kieran's friend. We are staying at his house for a hour or 2 and then off to the cinema to see Alice in wonderland, 3D, with the lovely Johnny Depp.
We are going to have something to eat afterwards.
The sun is shining again. This can only make everyone feel much better after the miserable snow, rain and ice.

Thursday, 4 March 2010

Carolyn, Tina and I went out on Friday. We went to eat at a Chinese restaurant, courtesy of Tina. We had a great night.

helping hands.

Yesterday was a busy day. Kieran still says his back is very bad, he didn't want to go to school. He had a bit of a flip and eventually calmed donw and went off to school. I told him I would pickhim up if school call me.
I went out to see Ali and met Gina there where we helped Ali sort out some things. We had some fun with Gina nearly having an accident on a ladder. Thankfully she was rescusedby Ali, We were in the loft just incase it sounded a bit strange!!
I got a call from school to ask me to pick Kieran up. Ali has rang St Lukes for me as they have a very good councilling service for cancer families. I think this will be good for Kieran, he will have some one else to talk to, not just me or school. I am hoping we can get to the bottom of what is happening with him. I am sure he has a bad back but maybe stress is making the pain worse.

I picked Kieran up and brought him home.
Kieran stayed with his dad last night as yesterday I could feel myself getting very stressed with it all. It is so hard when trying to sort out his back pain, he says nothing works.
Rich is with his dad for a few days, Siobhan is at home, she is still struggling through her course work and I am sure she feels depressed with what is happening with Kieran and myself.
I hope that next week proves to be radio therapy and not disease in the right lung.

Wednesday, 3 March 2010

Bob Wallbank

I have been in contact with Bob since January 2009. He had been doing really well. His wife, Bridget, contacted me say he had passed away on 1st March 2010.
Condolences to Bob's family, I am sure I can say that all at meso and me are sending love and thoughts to Bridget and family.
All meso warriors will continue the fight to find a cure. I and many others will carry Bob in our hearts always.

Every time someone is lost to mesothelioma, it makes it more real for all still here, it makes us all realise just how fragile life is.
Bob will be on our shoulders as we continue our journey.
Like Ricky Hill and many others, He is very much a part of finding a cure.

Tuesday, 2 March 2010

Kieran back to school today.

Kieran has gone back to school today, I took him to the Dr's yesterday and she confirmed he had strained a muscle in his back. The stress he is suffering at the moment makes the pain worse and has frightened him because it hurts to breathe.
I was sure something was wrong and wasn't prepared to use "tough love" on him.
As a parent, I think I know my child better than anyone. He is still very cautious about the noise at school and I have explained that things cannot be changed just for him, his teacher has to consider all pupils. I am really hoping he starts to enjoy school. He was upset about a phone call I had last week which he knew upset me very much.
Some people do not understand the extra pressures my children and I are under with my illness. Like anyone who has a terminal illness, it doesn't just affect the patient, it affects the whole family. My daughter is feeling very low at the moment and I am not surprised Kieran is feeling the same.
I just wish I felt I had the support where it should be.
Stork is off to the vets today as he is unwell, Kieran is worried about him too as he is his cat. I am hoping we can get on track with everything today. It has been a very difficult weekend.

Monday, 1 March 2010

Such a busy day

I haven't had a day like today for a while. It has been one thing after another today. I will fill in the details tomorrow.
Stork, Kieran's cat, isn't well. I think he is allergic to the antibiotics he was given for his bad paw.
I will see how he is tomorrow, if he is still poorly, we will be going back to the vets.
I can feel the CT blues rearing its ugly head. I am hoping upon hope that the meso isn't in my right lung now. I will find out next week but up until then it is depression time. Trying to juggle everything at the moment is difficult when my head is else where. I feel I need to get away for a bit but that is not an option.