Sunday, 30 May 2010

A lovely weekend with Anne and Jack.

This had me feeling so tearful, it is beautiful.
Kieran and I on Challaborough beach.

Kieran and I have returned home after our weekend away. I got a little lost going to Challaborough, Devon, I am a terrible navigator, but we made it. We went to Anne and Jack's local club in the evening where Kieran played his first game of bingo. He didn't win anything but came very close to it. He laughed so much when Jack broke the handle off a ladies carrier bag and she beat him for it, it was all very friendly I promise you! Kieran couldn't stop chuckling about it.
This morning we went to the beach, it was beautiful. We played a quiz game in the sand which Jack won as he drew things the best, Kieran would tell us what to draw and he would choose the best. He also put on his teacher head and we had sums to do.
We have had a lovely time and will go back and see them again.

It has also been 2 years since I started my treatment with Professor Vogl. I ventured into the unknown and am pleased to say I made the right decision as my meso is still stable. I cannot believe it was 2 years ago.
I didn't have any pain last night which was good. I hope that I am on the mend now, I am eating and drinking much better than before and need to get some weight back on. I also need to sort out my mistletoe as I have let it slip. I have missed a lot of injection as I have been in hospital and been too poorly to even try to do it. I will speak to Park Attwood and see what I can do. I know I need to have an infusion, it is the cost and the journet I need to sort out.

Saturday, 29 May 2010

Off for the weekend!!

Kieran and I are off to see friends for the weekend, we will be by the beach and as Kieran has never been in a caravan before, he is looking forward to it. It is so typical of English weather when something is planned, it's raining!! I don't think it will spoil anything. i hope Kieran will cope with no video games!

Last night I had some pain where the stent was. It was in my back and probably at the site of the fistula, it felt like I had 2 hot pokers in my back and 1 in the oesophagus. It has also left me with terrible indigestion, something I never had before.I hope it goes soon, it maybe that the stent has done some damage, I wish now I hadn't had it done.

I have a Dr's appointment next week and will mention it, I am hoping the pain would have gone by then.

Cookie still hasn't returned home, we all miss her so much, she is a beautiful little cat but I think we have definitely lost her now. We have put up a reward of £200 and hoped this would help to find her. Stork is a little lost without her, he is very clingy and wants cuddles constantly which I don't mind at all. I am hoping we can all get back to our normal family life and I can get back to work.

Friday, 28 May 2010

Kieran is back!!

I was so pleased to see Kieran today, he has been stying with his dad and I have missed him so much.
I haven't done much today, I am aching probably due to doing some of the grass cutting yesterday. I haven't done much for a few weeks as I have been in and out of hospital but I hope all that is behind me now.
I have a sore throat and back pain, I think it is to do with removing the stent as it is done via an endoscopy.
Tomorrow Kieran and I are off to see Anne and Jack. Anne lost her sister to mesothelioma in 2006 and fights hard to get justice and awareness about the disease and what causes it. We have become good friends, I knew the family anyway as I went to school with another of her sisters. Anne and Jack live in a caravan by the beach. I am hoping it will be idilic. I am sure Kieran will enjoy it.
I am meeting a warrior on Wednesday. Cliff was in the navy and is interested in the Profs treatment as he has meso.
I had an email from Dr John Edwards as I sent him an email from a Dr in the UK who is interested in the Profs work. Dr Edwards has said this looks promising and I am hoping it will be a reality soon. I am very excited about this.

Aching today

I am aching today, I did cut some grass yesterday after I asked Richard to do it. He had started it and when I got back from hospital, just asked if he was going to finish it.
He got angry with me and told me to do it myself. I told him in no uncertain terms not to speak to me the way he did and that I had just come out of hospital.
It really upset me how he responded to me. He is still out of work, he has no get up and go to get a job. I told him that he should shift his butt and get a job and then he could find somewhere else to live and do what ever he wanted to. I did start to cut the grass as sometimes I am my own worst enemy..... too stubborn!!! My friend Tina came over and helped me do it.

Siobhan came in from college and was very upset that her work had not been displayed like others had. She takes every thing to heart and is doubting herself. She is a wonderful artist and needs to know just how could she is. It has been tough for her, she has taken on my role, looking after the house, taking care of Kieran, trying to get on top of her college work and worrying about me. It is no wonder she is in a state.

Kieran seems to be ok, he has been with his dad all week and has loved it.

My throat is sore this morning and my back and neck are aching. I am sure it is due to the operation on Wednesday. I am going to try and rest today, Kieran and I will hopefully be going off for the weekend with friends. They live by the beach, it should be lovely and hope the sun keeps shining.

Thursday, 27 May 2010

Back home again.

This was the first stent I had inserted into my oesophagus.
This was the second stent which was removed yesterday, I am now pain free.

I went into hospital agian on Friday as the stent was giving me so much pain. I was certain it had moved and I was right. My oncologist's radiographer called him to tell him the stent had moved and was not covering the hole. He came and told me yesterday morning. I was booked in for another endoscopy yesterday to remove it.
Before I went down to theatre, the surgeons right hand man, Dr BD came to see me to get the consent from signed. He asked me about the stent, I said I had been told by Dr D the stent had moved, Dr BD told me in had not. I said I still wanted it removed as the pain was too much. He then informed me that if it was removed the fistula would cause me problems. I would have continuos bouts of pneumonia and all anti biotics would stop working and I would be in a fatal condition. He was acting like a bully, 4 times I told him I wanted it taken out. It didn't end there, I rang my oncologist who rang them and put them straight, telling them it had moved. As they didn't have the CT results, they couldn't see it.
I went down to theatre and just before going in the surgeon advised me it had shifted about a quarter of an inch. He said he could pull it up or take it out.... once again I said take it out.
I was so upset at them for trying to make me keep it. My oncologist said they don't like failure. I don't see it as failure though, I see it as learning. If anyone else has to go through this, the surgeon now knows that it maybe painful for them.

On another note, the CT scan revealed that the meso had not changed. Theo has been great. I hope he continues to stay where he is.

Saturday, 22 May 2010

Sure Samson has moved.

I woke up again in a lot of pain and urging, this is very similar to what happened with the last stent I had. I have decided I don't want another one put in. I can't take this pain anymore and don't want to have to go into hospital constantly to have it put back in place. If this continues over the weekend, I will get my self to A & E as I cannot eat properly as the swallowing mechanism causes the pain.
I hope this is all sorted out very soon.

Has Samson moved?

I am in pain yet again with Samson the stent. I am not 100% sure but have this terrible feeling that once again, he has moved.
I have just urged and tasted bile which is what happened the last time with the other stent I had.
I will be booking myself into hotel NHS if that is the case. I cannot take any pain killers yet as it is too soon after the last lot. I have took 2 x 12 hour morphine capsules and 1 pain killer which is supposed to carry me through 8 hours. Neither is working apart from helping me sleep. It is 3:26am now and I can't take the pain killer until 5:00am. I feel I have had enough now and if Samson has moved, I am not having another stent put in, I want it taken out. The pain is making me miserable and very short tempered with the children which is not what I want to do. It is also stopping me from getting on with my life. As I said before, I feel for anyone in constant pain who doesn't get any relief from it, it is awful. I am going to try and get some sleep now and if I am still awake at 5am, will try to take the painkiller, maybe it will help me sleep again if nothing else.

On a lighter note, I am loving the GOOGLE logo for today, PAC MAN!!! , it's the 30th anniversary of the invention of pac man. Not only is it a good logo, it is also the game which can be played.... excellent!!!! I am looking forward to my favourite being shown, space invaders!!

Friday, 21 May 2010

More pain killers.

I was contacted today by the palliative care team to ask how the capsules were working. I told the carer they weren't. She contacted my GP and I have got some different ones. Nothing seems to be holding it at bay. The pain is in my chest and stretches across my chest and back like a band of pain. It also radiates up to the throat. I have looked on the internet to see how the pain with a stent should be dealt with, it seems the pain should have settled after 72 hours, I had the op on 5th May 2010. Obviously, for me, it isn't working. I was upset this morning as Kieran had his assembly and I missed it due to the pain this morning. I hope this pain settles soon as it is getting in the way of all the things I need to do. I sympathise with anyone subjected to pain, it is awful.
Kieran will be home tomorrow. I hope I am not woken up again by the pain, I haven't had a good nights sleep right through for weeks. The morphine I am taking makes me sleep but doesn't stop the pain. I don't take any during the day as I drive and need to get to Kieran's school for appointments or need to sort out general chores. I am so lucky having good friends as I can call on them if I really can't do it. The grass still needs cutting, Rich was going to do it but is now away for the weekend and has told me to leave it and he will do it on Monday. I will see how I feel tomorrow as Siobhan and I might manage it between us.
I took Siobhan and Rich out to eat tonight, we haven't done that for a while and it was lovely, it would have been so much better without the pain!!!

Thursday, 20 May 2010

out with friends.

Tina and I
2 stunning ladies, Carolyn and Tina.

I went to Kieran's school today for his medical review. I am not putting too much on here due to people relaying information back to others but all went well.
I had lunch with a friend, came home and fell asleep. I was all refreshed to go out this evening for a meal with my lovely friends, Carolyn and Tina. We had a good meal, Tina had been to the dentists and had to have soft food as well as me. We were great company for each other : ) I had an asparagus and pea quiche which was lovely and Tina had mash and chicken.
Kieran is with his dad until Saturday, he has a school assembly tomorrow which will be wonderful because he is in it.
I am hoping Rich will cut the grass tomorrow. He has gone out and may not be home till the morning, I shall wait and see.
I only woke up once in the night, at 3am and took some nurofen then managed to sleep till 8am. I am hoping that soon I will be able to have an undisturbed nights sleep.

School Dr today

I have an appointment at Kieran's school this morning, it is his annual medical review. I am meeting my friend for a coffee afterwards and maybe some lunch.
I had a CT scan yesterday, I am sure that Theo has been good to me again. I will get the results next week. I am now taking morphine at night, it is a 12 hour slow release capsule. I had to take nurofen this morning as I was in so much pain with the swallow. I really want to sort out the pain as my fuse is very short due to the pain. Kieran is staying with his dad which will give us both a break. He said he has arm ache which then was corrected by him when he said it was his back again. He went to school fine this morning from his dad's no quibbles about going. I am thinking now that because I am in pain, he is, I am hoping that speaking to Jeremiah's Journey, a charity for children going through bereavement and the issues of living with a parent with a terminal illness, can help Kieran cope with what is happening in the family.
I am meeting some friends for a meal this evening which I am looking forward to.

Wednesday, 19 May 2010

David Phillips Parachute Jump


David now has his fund raising page up and running on just giving UK.
Please support this meso warrior as he leaps out of a parachute to raise money for mesothelioma UK.

http://www.justgiving.com/firrips

David has mesothelioma and it hasn't stopped him from doing this jump, he is a lovely man, he came to my 50th birthday party with his wife and ended up on stage playing a tune on a plastic guitar, he was a blues brother with my son Richard.
Good luck David, I would love to do what you are doing, you never know, maybe I will.

Tuesday, 18 May 2010

Back to normal...???

Kieran is off to school today, he is desperately coughing to stay home from school, all I can say is it won't get him an Oscar!!!
I am tired and going to have a nap when he gets on his bus. I know he wants to stay home from school, there is no need for him too but that doesn't stop him trying. He is doing well with his councillor and will see her again next week.
I am seeing the palliative care team today, at my house, I am hoping I can sort out the pain I am having as I am so snappy and tired and that is not good for the family.


The pain

I have been woken up again by the pain of the swallowing saliva when I sleep. It is excruciating. I can feel where the stent is and when I swallow, I feel the wave of pain slowly rise and then fall. I have taken co-codomal at around 11_30pm with oramorph, a liquid morpnine medicine. The co-codamal is taken every 6 hours, by 1 and a half hours, it has done all it is going to do. The oramorph lasts for around 2-3 hours and I can take it every 2 if I need it. Night times is worse, I take medication to bed with me and have it there ready for when I wake up. It is 2:59am and too early for co-codamal so I take a dose of oramorph and 2 nurofen which will hopefully take me across to 5:30am when I can take co-codamol again. I am reluctant to take oramorph during the day as it makes me so sleepy. I can't afford to sleep all day, the children are brilliant but I still have things to do as there isn't anyone, partnerwise, to hand bills and things too. I must admit I have some brilliant friends who I know if I asked, would help me out, thank goodness for them.
I am seeing the palliative care team tomorrow and hoping they can help me get past this hurdle. I saw the St Lukes carers and was told pain patches were good as they were slow release, the palliative care team disagreed and didn't recommend them. I was so zonked out in hospital, I forgot the reason why, I think that it is because it makes me sleepy. I can't afford to be sleepy during the day as I drive and still want to get out and have a bit of a social life. I am trying so hard not to let this get in my way.
I thought I had an appointment with my oncologist tomorrow but I haven't. I was certain he said 19th May and I would have CT scan AM and consultation PM, it seems i was wrong. I now have a CT scan PM and see him next week. I don't feel like arguing and suppose I am glad that I haven't got to get up early to get ready for hospital tomorrow morning.

Many thanks to my friend Tina's boyfriend, My cooker hood decided it was time to leave the fan on completely and the only way to stop it was to switch it off at the main fuse box. This meant we couldn't use the washing machine without the cooker fan being used. Tina's boyfriend came in and sorted it out.....thanks Lee, your a star, I need a Lee!!!
Time to give the lovely James a call, me thinks, as I want a bath put in as well!!!
I am going back to bed and hopefully won't be disturbed by Samson the stent again.......good night all x

Monday, 17 May 2010

We are home!!!


More pictures from the Charity event, Elvis is alive and well and living in Newcastle : )


Rich and I got the flight back home today. It has been a good weekend, I think he was getting a bit stressed come the end of it and having to have an extra night in the hotel. I didn't stress at all, what is the point. The alternative was getting a train back, 8 hours and paying around £400 for the 2 of us for the privilege...I think not!!
I am glad I suggested we stay another night.
I am waiting for chris to tell me how much she raised, as soon as i know I will post it.

The pains I am getting with the stent don't seem to be easing off. I am speaking to the palliative care team tomorrow about it as I am so tired and have the pains that I need to sort something out. I thought I had an appointment with my oncologist on Wednesday but it seems I haven't. I am having a scan in the afternoon and will se him the week after. i am sure all is ok with Theo, it is the pain I want to conquer.

Sunday, 16 May 2010

Flight cancelled.


Rich and I have been stranded in Newcastle as the Icelandic Volcano has erupted again and caused a dust cloud which has affected our flight back to Plymouth. I must admit I would rather be safe and stranded in this hotel than travelling and become a statistic in an air crash. Rich wasn't too happy about it but there isn't a lot I can do to change it. At least we didn't get to the airport and find out and I was able to book an extra night in the hotel for us.
I will call the airport in the morning to see if there are any flights, if not we will get a train back to Plymouth. At least our trip will be a memorable one!

MKMRF fund raiser last night.Kni

Chris Knighton and I at the Las Vegas event.
Rich and I in costume.

Rich and I had a good night last night. The fact that us and 2 other people were the only ones who dressed up didn't spoil anything. I dressed as Lady Luck and Rich was a blues brother. It was a very busy night and I think Chris Knighton did well. She has yet to finalise the total but it will be added on here when she knows. Last year she did just over £17,000. I am hoping she gets more than that.

Friday, 14 May 2010

Jon Matthews.















I am including Jon Matthews on the blog as I have been following his story for 2 years now.

Jon put a bet on that he would still be alive on 1st June 2008 and won £5,000. He did the same the following year when he won another £5,000. He was going for £10,000 this year but unfortunately didn't make it. Jon passed away earlier this month.
Jon's spirit and love of life was part of why he outlived his diagnosis.
I wanted to add him on here in admiration for what he has done to show that sometimes Dr's aren't right when they say there are only months left to live and mesothelioma doesn't have to rule your life.
Condolences to his family who have lost a wonderful warrior.

We have arrived!

Rich and I are eating a sandwich and chilling out in the hotel room in Newcastle. We are going out tomorrow for a couple of bits before we sort ourselves out for the evenings events. I am looking forward to seeing some warriors and meeting up with Chris again. We have our outfits and are expecting lots of people to be dressed for the event. I will add some pictures tomorrow.

Thursday, 13 May 2010

Hair done today.

I had a nurse from the hospital visit me today, the swallow lady, she went through all the pro's and con's of eating with the stent in place.
I have been told no crisps, crackers, sweetcorn, peas, baked beans, toast.....the list goes on but I can have custard and gravy to make meals softer.....YUK!!!!
I have devised my own diet as she saw I could manage sandwiches, bread and butter and water.
I managed toast yesterday morning, I cut the crusts off which makes it easier and plaster it in margarine.
After she had gone I popped in town to get a few bits for tomorrow as Rich and I are off to Newcastle, not sure if I have told you ....... ; )
After that I went to the hair dressers for an indian head massage by the lovely Callum and had my hair done, 3 hours I was there but what a treat.
I then picked Siobhan and her boyfriend, David up and we went out to eat. I didn't do too bad, garlic bread, jacket potato and apple with custard..... I feel stuffed now.
The pain is kicking in now so time for some pain killers, I am taking oramorph at night which is a morphine medicine as this helps me sleep and co-codomal soluble to boost it.
I takle nurofen if the pain is too bad and it is too early for a second dose of medicine. I am hoping I have a better night and am waiting for the time I sleep right through with no issues.

Wednesday, 12 May 2010

A message from Dave Phillips, mesothelioma warrior extraordinaire!

Many of you may not be aware that back in 2007, I was diagnosed with Mesothelioma, a Cancer caused by the inhalation of Asbestos Fibres, a condition which affects approximately 1 in 30,000 people, for which there is no known cure, and the life expectancy of someone diagnosed with this condition is generally between 6-12 months.

Those of us that have been diagnosed with this illness are pretty strong minded and fight the condition with whatever means are available to us. This cancer condition is not very well know to people, and subsequently very poorly funded due to its end result.

We are supported by the hospitals where we undergo treatment and periodic check ups, in my casePapworth Hospital in Cambridgeshire and also Mesothelioma U.K., which used to be funded by MacMillan, but since earlier this year has become a self funding charity in its own right.

I have fought my condition for almost three years since first being diagnosed and very much want to try and give something back, so that research can continue into fighting this disease, giving each of us and our families the opportunity to enjoy life to the best of our ability.

More and more people are being diagnosed not only by working in industries, where they can come into contact with Asbestos, but also family members who may have inhaled fibres from the clothes of a relative or friend, who may not necessarily had any knowledge of the repercussions’ that it may cause in later life, as it takes between 20 and 50 years to manifest itself.

It mainly affects the lungs as the fibres can also move to other parts of the body and I strongly urge you to log on to the www.mesothelioma.uk.com website, where more can be learnt.

I have therefore decided that my best option to raise funds and awareness to this disease is by doing a Tandem Parachute Jump with the Army's "Red Devils" Parachute Team and have booked a place for Tuesday 6th. July at Langer Airfield near Nottingham, and would appreciate as many of you as possible coming along to give me support.

Ideally I would like to raise in excess of £5,000 which is a pretty tall order, but whatever is raised will be divided equally between Mesothelioma UK and Papworth Hospital and with your help, I hope this figure can be achieved.

So please pass on this sponsorship form or contribute via the Bmycharity website (Permission to use this website has still to be formalised with Mesothelioma UK) to family, friends and business colleagues.

Thanks for reading this and I hope that I can come back to you all and give a report on the jump and let you know the total raised.

Kindest regards

Dave Phillips (firrips@btinternet.com)

Great day today


I saw my friend, Gina yesterday and had my first coffee without coughing too much. It was my first venture out of the house for 2 maybe 3 weeks and was good to see her. Today I met my other lovely friend, Carolyn, for lunch. I managed nearly a whole pasty! I got the car MOT'd and met up with Carolyn later for a meal at the china house in Plymouth. It has been a great day.
We took advantage of not having our sons around and had a wonderful evening of chilling and chatting.

Cookie the cat is still missing, we have a reward of £200 for anyone who finds her. We are all very sad that she has decided to leave us. It was going to happen as she is such an outdoor cat. We shall wait and see what happens.

Tomorrow I am seeing a nurse from the hospital about swallowing.... yes... I know.... I have had all the jokes!!! : ) She is checking that nothing is getting block so i will probably have a buffet style nibble banquet going on.... all are welcome : )

Later in the afternoon I am having an indian head massage by a lovely lad called Callum and getting my hair done.

Then Friday.... Newcastle!!! Chris Knighton has organised a May ball in aid of her charity, the Mick Knighton Mesothelioma research fund. I am sure it will be as exciting as last year.

The Stent.



The pictures are of the stent. I had this one removed to put in a bigger one as this one slipped or migrated from its position.
The stent is usually used for people with oesophageal cancer and/or cannot swallow properly. as I don't have a tumour, mine has nothing to latch onto. Mine is to cover a hole in the oesophagus or food pipe that is allowing fluid onto the lung. the newer one was put in and then a balloon was blown up to make it fit where is needs to as the bigger one was still a little small. so far so good, apart from the pain, all seems to be well. I am still not eating like I used to and have lost a fair bit of weight. Dr D will mention it next week I am sure. I am going to get some build up drinks to boost my weight as I feel unwell with it. I need to sort out the mistletoe as I am in need of a boost. not sure when that will be, I have to juggle everything around. Park attwood is not doing outpatient treatment, it has moved to Kent.

Car MOT today

My little car has been stuck in her garage for 2 weeks. She has her MOT today, I hope that it all goes through for her. Kieran is staying with his dad for a few days so I can get a little rest, Kieran said he had chest pains. His dad took him to the Dr's to check him for asthma, he doesn't have it, it is all stress again.
He has gone off to school ok today and seems a lot happier now he has spoken to the Dr.
I am hoping to be well enough to go to the Mick Knighton Mesothelioma Research fund May ball this year. Rich and I are all booked to go. It will be great seeing Chris again, she does such a lot of hard work for the charity. Last year I went with Tina, she won a bottle of houses of parliment whisky for her dad. This year the theme is viva las vegas. I have my outfit, I am going as lady luck. Rich has decided to go as a blues brother from one of the vegas shows. I am sure we will have a great time.
I have had a lot of pain since I came out of hospital. The stent is settling in, I will explain all in another post as I have a picture of the stent taken out. I am hoping everything settles very soon.

Tuesday, 11 May 2010

Frank McGroarty

Another condolence is going out to Jaqueline and family who lost her dad, Frank on 10th April 2010.
It is always so painful when someone passes and leaves behind a family who adore them. It is doubly worse when that pain could have been averted.
Like Richard and Barry, Frank has a loving family who will miss him very much. He will march along in the hearts of other warriors who have passed as we strive to find a cure for this awful, senseless disease.


Condolences are also sent to Wendy Anne Fairclough who lost her wonderful husband, Barry to Mesothelioma on 2nd May. Wendy writes

"God Bless him he never complained, he had such a strong Faith he was an inspiration to everyone who knew him I LOVED HIM SO MUCH he was my sole mate and I will miss him so much I cannot imagine life without him I feel so lost and empty xxxxx"

All at mesothelioma and me send our heart felt sympathies to the family. Like Richard's family, Barry's have the facebook support if Wendy should need it.


Richard Connors


Condolences to Karen Elliot and family as they struggle through the loss of her dad on 7th May 2010, Richard Connors, Richard is pictured looking very proud, with his wife and Grandchildren.
Mesothelioma has ripped into another family and torn it apart.
Heart felt sympathies are sent to Karen and family from all at Meso and me. Richard will march with us as we strive to find a cure for this awful disease.

Karen and family have support on the mesothelioma warriors facebook page which is a great community. It is there for her and the family whenever they need it.


Back home.

I arrived home from hospital yesterday evening. I have a mountain of pills to take for the pain I get while the stent settles in.
I will catch up on the blog as I cannot get on the page from hospital.
Kieran is going t the Dr's again today, he has had chest pains which I want checked out. I am thinking it could be asthma as he does get hayfever and excema. Hopefully we will get a resolution today.

Wednesday, 5 May 2010

Can't sleep.

The pain in my throat is so bad it has woke me up again just as it did last night. That and the heart burn, what a great combination. I hope the bigger stent sorts out this problem. If it doesn't, it will have to be removal of the fistula and that is the very last resort.
I am going to try and get some sleep before I get ready to go back into hospital tomorrow morning.

Tuesday, 4 May 2010

Chemoembolisation survey.

If anyone has had chemoembolisation from the Prof, could you please take part in a survey for my friend, Ali.
It doesn't have to be for mesothelioma, any cancer he has treated will be accepted.
Copy and paste the link into the search bar, it will take seconds.
Thanks for your help.


http://www.surveymonkey.com/s/BDXY8KF







In and out of hospital.

I went in hospital last Wednesday for the wireless camera endoscopy. I was told when I got there I would be having a stent put in immediately. This was done around lunch time on Wednesday with the hope of going home on Thursday... It wasn't to be. I have one of the worst chest infections I have ever had and ended up staying in till today.
The latest news is the stent that was put in last Wednesday has moved and is giving me terrible heartburn. I cannot get rid of the indigestion. It has been decided that I will have a bigger stent put in tomorrow and the smaller one removed at the same time. I hope this works. The problem is that people of my age are rarely diagnosed as a TOF and the stent is used for patients with oesophageal cancer who cannot swallow. The stent latches onto the tumour, which I don't have and keeps the oesophagus or food pipe open so the patient can eat. As I have a normal oesophagus, mine has slipped as it has nothing to latch onto.
I will update as soon as I know any more. Once again, Theo is a real trooper and behaving like the gentleman he is.