Wednesday, 27 February 2013

Mesothelioma UK acknowledges Prof's treatment.

I was pleased to see Prof Vogl's treatment being talked about in the Mesothelioma UK newsletter, Spring 2013 edition.
Dr Jeremy Steele is at Barts and one of the leading Mesothelioma Dr's in the UK. He hasn't said yes or no to supporting the treatment as we all know it needs to be trialled first. 

What I like is that it is being talked about. i hope this gets out in the big wide world and is considered as another option for mesothelioma patients as there are so very few around. Dr Sugarbaker pioneered a treatment for peritoneal mesothelioma which was talked about at the mesothelioma UK confeence last year. Dr Sugarbaker's treatment was given the same consideration years ago but it now being recognised. So, there maybe hope that someone, somewhere will listen and want to trial chemoperfusion with conventional chemo. The article is below.

An article written by Dr Jeremy Steele at Barts, London.
Published in the latest Mesothelioma UK newsletter, Spring 2013.

Nonselective Transarterial Chemoperfusion: A Palliative Treatment for 
Pleural Mesothelioma. By T Vogl, S Lindemayr, N Naguib, J Gurung, N 
Nour-Eldin, S Zangos, E Mbalisike. Goethe University, Frankfurt, Germany 

Over several years Professor Thomas Vogl and his team 
in Frankfurt have been treating patients with pleural mesothelioma with a technique called ‘Nonselective Transarterial Chemoperfusion’. This is a new way of
delivering cytotoxic chemotherapy to patients with pleural mesothelioma. It is an extension of similar techniques used
in the treatment of cancers in other parts of the body, notably the liver.
Techniques similar to that described in this article are in use in the NHS in the UK, but not for patients with
mesothelioma. Professor Vogl’s technique has been the subject of interest in the UK, especially from patients with mesothelioma who, understandably, want to hear about
all possible treatments. Doctors and nurses caring for people with mesothelioma have also been interested to hear more about this treatment. British doctors have had to be cautious about recommending treatment with nonselectivetransarterial chemoperfusion to patients because no full results for patients with mesothelioma have been available until now.
Professor Vogl’s team have now presented results on 39 patients treated with transarterial chemoperfusion.
The median survival time from first
treatment was 17 months, with a mean
progression-free survival time of 2.6
months (i.e. 79 days). Progression-
free survival is a key measure in a trial
of this type as it is sometimes used
to determine the likely benefit of a
treatment.
By comparison, the progression-free survival in the clinical trial of Pemetrexed and Cisplatin for previously untreated
patients (published in the Journal of
Clinical Oncology by Vogelzang, 2003)
was 5.7 months. An even closer comparison is with
patients treated with Pemetrexed and Cisplatin as second-line chemotherapy (as in Vogl’s trial). According to the
results, these patients had a median survival time of 15.3 months (Manegold,
Annals of Oncology, 2005). And in the randomised ‘MARS’ trial conducted in the UK, the median survival for patients not treated with radical surgery (i.e. with intravenous chemotherapy only)
was 19.5 months (Treasure, Lancet Oncology, 2011).
Professor Vogl and team say the following about transarterial chemoperfusion: ‘This procedure could be of benefit in the treatment of this tumour in stages when it is
unresectable’ and, ‘that our study results will open up the horizon for more studies to be performed.’ Professor Vogl concludes that transarterial chemoperfusion may have the potential to yield positive results and response
in the treatment of recurrent and/or unresectable pleural mesothelioma.
What needs to be done is a randomised trial of transarterial chemoperfusion versus intravenous chemotherapy.
Only a randomised trial can show if transarterial chemoperfusion offers any benefits to patients above and beyond what we can already do. The results presented in the recent article cannot confirm or deny such a benefit.

Consultant Medical Oncologist Barts and the London NHS Trust
Nonselective Transarterial Chemoperfusion: A Palliative Treatment for
Pleural Mesothelioma. By T Vogl, S Lindemayr, N Naguib, J Gurung, N 
Nour-Eldin, S Zangos, E Mbalisike. Goethe University, Frankfurt, Germany


ANTI-E card


I received this in the post yesterday. Because i have had blood transfusions i now have an anti body in my system. this was mentioned when I was cross matched a couple of weeks ago when I had my last transfusion. On the second bag of blood i had a reaction, a high temperature and the shakes (rigours).

It is only since then that I have had problems with allergic reactions with the anti-biotics in hospital. I am wondering if the 2 are connected?
i spoke to the consultant today who said the card is only for when I have a transfusion. I am waiting to see an immunologist, I have told the consultant that as my condition is so serious, I can't wait on a waiting list and am happy to go private if it is quicker. I can't do anything else now until I know what is happening as i was planning more chemo. This has been put on hold for the moment.





The British Lung foundation has a survey on it's web page for mesothelioma patients and families. 

http://www.smart-survey.co.uk/v.asp?i=72322wkgrd


Please copy and paste the link and fill in the survey, thanks for your support.

Tuesday, 26 February 2013

Allergy.

I have not had a successful time with anti biotics. I had Augmentin from the Dr which caused me to choke and had difficulty breathing. I had the ambulance out for that reason and was taken to hospital.
I didn't know it was because I was allergic to them. The same thing happened a couple of years ago and I was diagnosed with swine flu and then aspiration pneumonia. It looks like it might have an allergy reaction after all as it only happened with this drug and I thought it was because the tablets were too big, it seems not.
The drugs I had in hospital were AUGMENTIN, I had the liquid form of AUGMENTIN in hospital, not the tablet. After an hour of taking it I felt very light headed and nauseous. This was around 11:30 am.
At 8:45 pm, approximately, I noticed a rash on my arms, legs and chest. This was such a long time since I took the medication. I told the nurse who had a look. She then went to speak to another patient, as she was leaving I told her my tongue was tingling. She left the ward to get a piriton tablet (Anti-histamine). As she left my chest started to tighten, I walked out of the ward after her and told her my chest was tightening. It was all so quick. I sat at the nurses station surrounded by nurses and drs. I took the tablet but it didn't seem to be working quick enough. the Dr decided to give me an adrenaline shot which sorted it out right away. The next one was TAZOCIN, another penicillin drug. It was a tablet. I took it and within minutes the same thing was happening again. It was so very quick. I had an anti-histamine for that one which seemed to work, i don't think I was as far into the allergy reaction as I was the day before.
It was decided that there would be no more penicillin. LEVOFLOXACIN was the next one.
This one was done through the IV, intravenously. I was hoping this one would work as the Dr had said it wasn't related to the penicillin drugs. I can't remember fully but I think I may have taken one successfully. The second one would have caused the problems. Again, same symptoms, tingly tongue, tight chest. Anti-histamine given as it was caught before it started.
Siobhan and I decided we would google the drugs and we found out that anyone allergic to penicillin should be careful taking this drug. the pharmacist mentioned that there was a risk and noted it in my notes but the Dr said it should go ahead.
So that is 3 down, My poor little immune system is so confused.
So, Saturday, it's onto number 4, TIGECYCLIN, A yellow coloured medicine. This was in IV form too. I was so pleased that the first treatment went in successfully, no issues. Hooray, maybe now we can get on top of this chest infection. I am very aware of keeping calm as the Junior Dr had told me that the Drs felt I was having panic attacks about taking the tablets and that was what was causing the reaction. This devistated me as I know how important it is for me to get rid of this chest infection otherwise i can't have chemo to conquer Theo.

 Time for the second dose. All was going well for about 20 minutes when I felt my arm become so very itchy and a horrible bitter taste in my mouth. I had a rash starting on my arm were the cannula was. Oh no, not again. I told the nurse just to get the rash noted but I felt alright. I had my ID band on the same arm as the cannula which covered were it went into the vein. I lifted it as my arm was so itchy, damn..... the cannula had tissued. The medication was going into my tissue and not the vein. There was a blister like formation on my skin. It was yellow, the same colour as the medication. The nurse stopped the drug. there wasn't any other issue that goodness. I did ask about the toxicity of the drug going into the tissue but no one knew anything or seemed to be concerned.
So, what next. The cannula was taken out, I went off to sleep as I had waited a long time for someone to put a new one in. There was a student nurse on the ward who said he was going to do the cannula. I told him I had difficult veins and it wasn't a good idea. Thankfully this was forgotten about and i was told a Dr would do it. I really don't want to be prtacticed on, I know they have to learn but please don't learn on me.
At 1:00am I was woken by a Dr who was going to put in a new cannula, she scared me half to death waking me up as I was in such a deep sleep.
I started the next lot of medication later that day. As the drug was started my arm was itching. the nurse was very busy and asked Siobhan if she would keep an eye on me. Again, they are so stretched, they can't afford to have a nurse or HCA (Health Care Assistant) to sit with me while the drug was administered.
My arm was so itchy, I looked at it and there was a rash starting, I thought it might have been because it had tissued before and it was in my system. Again, I told the nurse. I got the bitter taste in my mouth again. The nurse stopped the drug and went away. I had the rash coming up on my chest as well. It was so itchy, the nurse didn't come back. I said to Siobhan I was going to ask for an anti-histamine tablet to calm this rash and hope it wouldn't go any further. Siobhan was still watching me as the nurse was at the nurses station getting another drug for another patient. she said she would be right with me. I went back to my bed and was hoping that nothing else would happen. Too late, here we go again. My chest was very slowly tightening. I asked Siobhan to tell the nurse. there seemed to be no urgency. I started coughing and getting tighter and tighter. Eventually the nurse came over with the anti-histamine and I took it. As I wasn't fully tightened in the chest, the tablet took affect quite quickly. I had a a nebulisor as well. I was so upset with all this and said to Siobhan that I was worried the Dr's wouldn't believe me. That is why I have documented the evidence. I am not sure how anyone can manifest a rash within minutes, maybe it is possible but I wasn't doing it. Lots to talk about when I see the Dr's on Monday I think as evertything tones down in hospital at the weekends. There are a sleleton crew of Dr's on who don't know all the issues of the patients.


My hand has the rash starting, my arm was so itchy as soon as the drug was started. 


My arm was so itchy, unbearable, I wanted to scratch and scratch.


The rash coming up. This was after having the anti-histamine.


Having a nebulisor to help with my breathing. I wanted a picture of me just incase it is doubted that the picture of the rash was me. how awful to have to do this just to prove that I am not making myself have these attacks.


This is from the day before the reaction. A blister like formation on my skin. The yellow is due to the colour of the medication, TIGECYCLIN, the rash was so itchy.

MONDAY

I was ready to see the Dr's on Monday. My friend Bill, a fellow warrior was kind enough to be with me when I spoke to the consultant. I asked for a private room as I didn't want to talk about my situation behind a flimsy curtain. The consultant found a room and we all entered, all that is but the Dr who told me it was all psychological, anxiety. The consultant started talking, nothing about what had happened over the weekend. I was so focused and angry about being left all weekend to ponder on the fact that I may be seen as someone with Munchausen syndrome, someone who would manifest an illness for attention or to stop myself taking medication.
I brought up the subject eventually and was told that the consultant didn't know that I was told this. I told him how upset I was about it and about the lack of communication. I asked to see my nedical notes, I wanted to know what was written. He took the notes from the other Dr in the room and read out that anxiety had been mentioned. I never got to see them.
I told him the Dr had gone away after telling me this and then come back and apologised as maybe he said it all wrong. I didn't know why he wasn't in the room as well. I did query this but nothing was acted on. As soon as i said I wanted a second opinion, things seem to change, seeing an immunologist was mentioned. I told the Consultant that I have 2 auto-immune diseases, alopecia and underactive thyroid, and my immune system in compromised. Bill backed this up for me and was very good at explaining our condition, not that the Dr should need this. I said I wanted the care plan investigated as well as it wasn't the correct information. If i was a very ill and vulnerable patient who needed to eat, the information about the cottage pie would have been dangerous as the nutritionist, not that I have seen one, would have been under the impression the person was eating well.
So, I am waiting for a phone call from the consultant to explain why I was told it was anxiety causing the reactions. Well, I think that is rant over : ) I am so glad to be home. I was told by the consultant to have 2 weeks break from treatments which is what I was thinking anyway. I am going to rest and relax, Siobhan and my friends are watching so I have to be a good girl : )

Hospital failures.


This is the promise the hospital give. I didn't find that I had clear information, I was left with the words of a junior Dr telling me my allergies were psychological all weekend. I was so upset on the Sunday when, I once again, had an allergy and was in tears thinking I wouldn't be believed. That has to be the worst thing. Dismissing what has happened to someone is cruel. Dr's should be listening to the patient as they know exactly what is happening to themselves.


Again, another failure, this is my care plan, it tells the Drs, nurses and dietician exactly what the patients diet is like. I am medium to high risk due to my illness. I was horrified to see that I had eaten 3/4 of cottage pie. This was not a veggie version either and I wouldn't have eaten that. This was meat. I didn't have cornflakes either. I think it was filled in after I had left the hospital as, I believe, there is a lot of paper work if someone discharges themselves so all the i's need to be dotted and the t's crossed. I also had someone else's name above my bed saying soft diet which was there all day, right up until I said I was going. I don't blame the staff on the ward at all. This is a respiratory ward and the staff are dealing with far more than those issues. They have many dementia patients as well who are climbers and escapers. They also have some very ill patients who need round the clock care. There are not enough staff to cope.


This was in my notes the day I discharged myself. I was not upset about the reaction to meds and didn't feel that I wasn't getting better. The reason I left was because there was no communication. I waited all day for pharmacy to say if the had the Tigecyclin in as this was the next treatment. At 6:30pm i decided I had waited long enough. I found out all I needed to know in 1 1/2 hours which I had been trying to get all day. The Dr wanted to start to treatment that evening. i said no, I will be back 8:00am sharp on Saturday morning. As it happened, I was allergic to the Tigecyclin too.

Hospital food.

I was so pleased to see that James Martin was doing another program about hospital food. After over a weeks stay in hospital I found the food was very much under standard. When people are in hospital and getting over serious illnesses and operations, nutrition is a big part of recovery. The food in Derriford hospital comes from Wales, it is all pre-cooked and frozen. It is put in an oven and cooked before coming out to the patients. Having a special dietary requirement seems to be a real problem, the kitchen staff order what the patient needs and it doesn't arrive. A lot of the time people are having their families come in with food for them.

My experience has been the usual one. I am a vegetarian and a fussy one at that, I don't like peppers or mushrooms which is why I don't say I am a vegan. I am not a vegan but have tried before and the vegan meals before and it is always mushrooms or peppers. I don't like the texture of meat so veggie cottage pie is a no no. I don't like the taste or smell of it either. I tell the staff I am vegetarian, there is usually a vegetarian option which is vegetable crumble, vegetable bake, pasta dishes. I don't like pasta and sauce dishes. I like plain simple food that I can see what I am eating, I don't want things hidden in my food. I ordered cauliflower cheese, twice, and each time macaroni cheese came up. All those tubes going on, yuk. I am a fuss pot but I know what I like. Thank goodness for Siobhan and my friends bringing in food and being mobile enough to get off the ward to go to the hospital restaurant to buy something for my meals.

Breakfast NHS style, cracked cup with the tea and toast.


This was supposed to be cauliflower cheese, it is actually macaroni cheese. Not very appetising.
The kitchen staff were wonderful and changed it to roast potatoes, swede and cabbage. Not difficult to do. Thank goodness for the wonderful people who dish out the meals and understand how important it is to have a hot meal each day.


Hot cross bun for breakfast and a cup of tea for breakfast courtesy of my friends Chrissy and Avis, thank you girls x x

My lovely girl, Siobhan, brought me in a little picnic which I had for my tea as i was dished up macaroni cheese again. Cheese sandwich, a lovely cup cake she had made and some other treats. Thank you baby, this was so sweet x x

So that is my rant, good luck James Martin, I hope you manage to change things for patients. It is one of the most important rules of recovery and is included in care plans.


Monday, 25 February 2013

Home!!!!!

I was ready for the consultant this morning. I was not happy that I had been left all weekend with no communication and with the thought that I was lying about the allergies I was getting.
Bill, my lovely warrior friend, came in to support me when I spoke to the dr. Him and his wife, Ann, have done so much for me over the last few weeks.
We waited to see the dr, he arrived at my bed side at the ward, I told him I didn't want to talk on the ward and could we got to a private room.
That was agreed and he went off to find a room. He didn't mention anything about the weekend and all that had gone on and what his junior colleague had told me.
I told him that the dr I saw on Friday had said that they had come to the conclusion that my allergy attack was anxiety, I was having a panic attack about taking a tablet and having a reaction. The consultant said he knew nothing about this. I asked to se my hospital notes, he asked for them to be passed to him. I wanted to know what was written in them for Friday. It did mention anxiety. I asked why this was stated to me on Friday? He couldn't tell me as he insisted he didn't know. I did say I thought they all communicated and surely they all agree about what will be said.
I find it highly unlikely that a junior Dr would repeat anything if a consultant hadn't discussed it first as the consultant is his boss.
I also mentioned that I had discharged myself. I told him I could have had the weekend at home and come back on the Monday, he said this was a sensible thing to do but I reminded him that the dr on duty said it wasn't a good idea. The consultant didn't even know I had medication yesterday and had a reaction. Why are they not communicating?
I also ,entitled someone filling in the gaps, saying I have had a meal when I clearly have not had what is written on the sheet. It says I ate 3/4 of cottage pie, I wouldn't eat that as I am a vegetarian and there was no veggie cottage pie, even if there was, I wouldn't eat it as I don't like the texture of it. I think because I had gone home on Friday and knowing that my notes would be checked, it was done very quickly to cover up. Not the fault of the staff on the ward, they have been amazing. They are so busy, so many very I'll patients on the ward that need a lot more care than these nurses can give them.
So many failings, I feel sorry for people who don't have a voice, they could have gone through the day and ate nothing but the sheet would tell the nutritionist that they had eaten, so very dangerous.
I am at home now, I feel so relaxed, happy to be home again with my children and my cats.
I am going to rest, I have promised Siobhan and my friends I will.
I have a reiki session on Friday which has come just at the right time. I am going to see my friend Many's new cats and that it is, that is on Thursday. Also my lovely new car, I need to get out and about in her. But the most important thing is to rest. The consultant is going to get in touch with an immunologist which was what I have been thinking for days. I need to get my chest infection sorted out so I can have the next lot of chemo, so it's 2 weeks break before battle commences again. What we all need is some sunshine and fresh air.

More fun at the hospital!!!!

What an eventful time I am having, I checked myself out of the hospital on Friday evening and went back in at 8 am sharp Saturday morning. Rotten cannula put in, thr Dr found a big vein and did it in one shot. i was worried at first that I was goingto be practicedon by a student nurse but that was not even thought about, the job went straight to the Dr.I started the new drug, Tigecycline, later that day, it is bright yellow in colour and matched the disposable aprons perfectly.
All went Well with the dose.
12 hours later and it was time for the 2 nd dose. All was going well until my arm started to get very itchy. I looked down to see a rash. I told the nurse as I wanted it noted, I could not manifest a rash surely just by thinking about it. I was not in a panic and was very calm, I wanted this one to be the one that would work.
I lifted my ID band and underneath ear was a yellow blister like mark. I had tissues which means the cannula is not in the vein, it is going into the tissue. The drug was stopped right away and the cannula removed.
I waited all day for another cannula. No one around to do one as I am so difficult with my little veins.
I went off to sleep, wonderful, it was quiet so a good night sleep was needed. It was never going to happen.....1 am I was woken by a Dr to out the cannula in, I was in such a deep sleep that she scared me half to death when she woke me.
She got the cannula in first time, thank goodness, I was so tired that now I cannot remember if I had a treatment or not, will update when I remember. I had a treatment later in the day, about 3 pm. The drug was put up and started. I got a real strange taste in my mouth, I thought this was down to it tissueing the night before. My arm was itching like crazy again. I kept an eye on it, sure enough, here comes the rash.
I told the nurse who, again, stopped it right away.
She asked Siobhan if she would watch me as she was very busy, they are fully stretched on this ward. The rash was still building up. I told siobhan I was going to ask for an ant- histamine tablet, which I did. The nurse was dealing with someone else and I would have to wait.
I got back to my bed and I could feel my chest tightening. I was getting upset this time as I have been left all weekend with the Drs telling me that I am manifesting this myself. I to,d siobhan to go and get someone as I had pressed the bell and the nurse can take an age to come. She went straight up to the nurses station and told the Dr there. The dr came down and then the nurse with the pill. I had a nebuliser put on and sat in the chair, trying to stay as calm as possible.
I could feel it all easing of, thank goodness.
Why would anyone really want to create this feeling, I hate not being able to breath, it scares me to hell.
So, no more drugs until I see this Dr who will be getting both barrels today and I will be firing him. I want a second opinion, I know it is my immune system attacking anything coming into my body as it can't determine what is friend and what is foe. I have emailed Dr Orange, my mistletoe man who knows a lot more about the immune system and may help me get some answers.
Only time will tell.

Saturday, 23 February 2013

What a stressful day.

The day couldn't have started in a worse way. A junior dr came to see me and explained that I wasn't getting full blown anaphylaxis , I told him I knew that and it was more of an allergy reaction. He then said the drs had discussed it and they felt that I was having a panic attack about taking the tablet. I was confused as I had a rash, tightened chest and tongue tingling. I asked him what he meant and did he think I was suffering from M√ľnchausen syndrome? I was not happy. I also asked him how I would feign a rash coming up on my arms and legs. He couldn't answer me. He went away and a few minutes later came back and apologised and said maybe he had worded it wrong. I explained to him that I have 2 illnesses that would kill me if I didn't have anti biotics and why would I put a barrier between me and that? I thought the drs would come back as we had to sort out about another drug and I was waiting to see if it was in stock. No one came.

Siobhan came in at 2:30 pm to see me. We waited all afternoon, still no communication from the pharmacy who only had to say that they had it in stock. By 6:30pm I have had enough, I got changed and walked to the door with Siobhan, we were only going to sit outside.
We were called back by a health care assistant who I told I was going home. I asked for the cannula to be removed as I wanted to go home, I felt there was no point in staying at the hospital with no drug as I cold do the same thing I am doing here, at home.
The cannula was removed and I signed the discharge note and was asked to wait as a dr was coming to speak to me. Siobhan and I waited for the dr, he arrived quite quickly. He was about to pull the curtains around the bed when I said I wanted to speaking private. When your behind a curtain it means everyone can hear your business and I didn't want to let everyone know what I am dong or not doing.
We went to another room and sat down and the dr explained that he didn't want me to go home as I wasn't well. He said someone was on the case to pharmacy and he would find out what was happening. I told him I needed a night at home as I was tired and I wasn't getting much sleep with the detention patients acting up all day and all night. I told him I knew it wasn't their fault, they can't help it but I have to think of me and I had already been in a week. He told me that pharmacy had the drug and they could start it this evening, i said no, i will start fresh tomorrow. He agreed to me discharging today and coming back in on Saturday morning at 8: 00 am. So, siobhan and I went home , got there about 8:30. It was so lovely to see my cats and sleep in my bed.

I woke up at 6:30 am and got ready for the hospital. At 7:40 the taxi arrived, Everything sorted, I was off to the hospital. I hugged Siobhan and said goodbye. I got in and satin my designated area. I was told I would have a cannula, a student would do it. I think not, my veins are so bad, in the end it was done by a dr who found a good vein and put the cannula in first time. I have had the first drug, all sorted, no problems. So it looks like all might go well. I will update when I can.

A very BIG THANK YOU to the meso warriors for thinking of Siobhan. They sent her a lovely bunch of flowers as she has been looking after me. Thank you wonderful people. You have made her day x x x x x

Friday, 22 February 2013

Very large catchup

What an eventful week I have had. Start off trying to clear up a chest infection. On Monday I saw my GP and had the anti biotics changed to a lesser dose as the ones the hospital gave me were too strong and big, very hard to get down. Had one at lunch time, another at tea time and had a choking fit on the smaller ones. As I managed to get rid of it, my airway started closing up. I told Kieran to get siobhan, she was on the ball and grabbed the phone right away.
An ambulance was with me in minutes. My sats had gone down to 85% I think it was and I was having difficulty breathing. They took me to A and E where I stayed until 5 am Monday morning. I think I got into hospital about 8:30pm the night before. The ambulance driver had come back twice and checked how I was, he was so kind.

I went onto the investigation unit. Later on Monday after seeing my oncologist. He spoke to the chest dr who I also saw and went on his team. Dr D is wonderful, he really looks after me.

I then went on the respiratory ward. I had IV anti biotics which were fine. I had a syrup version of the tablet I had at home. With in an hour of taking it I got very lightheaded and nauseous, I told e nurse who gave me an anti sickness drug.
I thought no more of it, It wasn't until the evening that I started to get a red rash on my skin. It was coming up quite quickly. I was surprised as I had taken the talent at 11:30 am and it was now 8:45 pm. I told the nurse who went off to get a piriton tablet for allergies. As she went, my tongue started to tingle and my chest tightened. I pressed my bell but no one came so I made my way to the nurses station. By now I am getting really tight. I shouted to her I was having an anaphylactic attack. She sat me on a chair and quickly gave me the anti histamine tablet. The dr arrived and gave me an adrenaline shot. What a drama!

Things settled down. I had a good nights sleep although my legs were twitching and my heart was so loud, it didn't stop me falling asleep though. I woke up in the night with a mild tightness which seemed to drift off.
So I am allergic to this tablet now and is looking likely it could be a penicillin allergy.

Yesterday it was decided we would try a different drug, no joy with that either, right away I had an attack. I had a third try with another one, this time IV and done slowly by the nurse. She said she was going to stay with me while it was ingested. It didn't take long, she got 4 mls in and I was off again. So the plan is to try again today.

I am so thankful that it isn't Theo playing up or Frederick, my TOF. They get a lot of the blame.
It is a matter now of getting the right drug to tackle this chest infection and then I can go home.
In the meantime I will be in hospital until it is sorted. The staff are wonderful, they have such a tough job to do. Not only are they looking after respitory patients but Alzheimer's as well and a lot of them are wanderers and can be very abusive. It is so sad to see a life destroyed by Alzheimer's.

My daughter, Siobhan, has been the most amazing help, taking on the role of a carer as well as trying to lkeep her business running. Kieran has been the messenger to all the warriors. There have been so many wonderful comments from a lot of people, I am overwhelmed by the love and kindness I get, especially from those I have never met. Thank you so much all of you x x x x x

Thursday, 21 February 2013

Hi! Siobhan here. Just to let you guys know, mum is in hospital at the moment and she needs to rest so she's not been around on blogger and facebook very much. She wanted me to let you all know she's OK and will update when she gets home. :)

Saturday, 16 February 2013

Chemo canceled.

Thursday evening was eventful. I went shopping to get some bits and pieces so Siobhan wouldn't have to worry and carry heavy things home. I am loving the new car, she was so much easier to drive today and it will get better.
When we got back home, I felt very cold, chilled to the bone. A few hours later I started the shakes. I get these when I have an infection, the body temperature goes up and the body shakes to bring it back down. It is called the Rigours, I think that is how it should be spelt.
From 7 pm until 8:30 pm I had four.  I took paracetamol that calmed it down. I called the hospital, Dr D advised calling the Dr's and he wanted them to come out and do an examination. Siobhan called at 7:15 pm , they eventually arrived at 8:45 pm. The Dr checked the kidneys and my lungs. All was fine apart from the shivers. My temperature went up to 39.5.
The Dr called out an ambulance to take me into hospital. I got to the ward and sat in a corridor for an hour before a bed was ready. They were so busy. I eventually got a bed around 10:45 pm. Lovely..... an air bed, these aren't very comfortable. They are for patients who can't get out of bed, they help with circulation. They are ridged and not the most comfortable but, I had a bed.
I tried to get off to sleep, 5 ladies who were in the ward with me were all moved to different wards during the night and more ladies came in. The ward is as busy as it is during the day.
I didn't get much sleep, around 5 am I had another shake, more paracetamol. I eventually got of to sleep only to we woken to ask what I wanted for breakfast, it's 7:30 am I would rather had been left asleep.
I got myself washed and dressed after breakfast. Then it happened, I had to have a cannula in....oh no. I did say that I have small veins and could I have a small cannula, No my veins are fine, we will find one. Here we go, first attempt which really hurt. The HCA tried to get it in, it was having none of it.
She then said the Dr would try. Again I said that i can't have the large ones. But no, we are going to try.
Attempt 2, no joy, so what did he do??? ...........  Down size!! yes, that was what I was saying. This is why I hate going into hospital. I wish that the Dr's would listen.
Eventually attempt 3 was successful. I was in tears by this time. The Dr apologised, I have to say that the staff on the ward were lovely. Very helpful. I had the anti biotic put through the cannula. I was told that I could go home today. I really want to, although they were lovely, I don't like being in hospital.
I was in all day when eventually I was told I could go. the Dr's seem to think that I may have had pneumonia or on the tail end of it. I have different anti biotics to take. Hopefully this will sort out the infection. Bill, my lovely warrior friend from our support group, picked me up and took me home.
I was so pleased to be home. Siobhan made cheese and potato pie which was lovely and I took myself off to bed after I had eaten. I was so tired. I had a good nights sleep, woke up to a strain on my leg, I think I did it while I was shaking. My temperature seems stable today. It was fluctuating last night.
I hope I am on the up now, I want to get out in my new car : )
Chemo has been canceled so I will find out next week if I start it on Friday, it may all depend on how I am feeling.


Home at last and Tess's lovely card (below)

Tess will be going through treatment again. I hope all goes well for her, thank you Tess, we will get through this together x x



Thursday, 14 February 2013

More gifts today.

I went to the Dr's this morning to have a thyroid test and took my urine sample in as well to check my kidneys are doing alright. First things first, I put Polly's charm in the car. She sent over a dragonfly from America as a Christmas gift. It looks lovely in the car, Thank you my twin x x x

 I drove Olivia, or Livvy as I am going to call her now, to the Dr's, Still a little nervous, but I did it.
I got home, picked up some little bits for my lovely friend Tina, it was her birthday on 31st January, she was in Japan visiting her son. I went round to her house only for her to come out and say "I was going to pick you up?" She has misread her own message and thought I had wrote it. Join my memory club Tina..... lol x x
Tina got in my car, She is the second person to have a trip out in the new car, Siobhan being the first.
We went to the Beefeater at Marsh mills, we had soup and garlic bread. My TOF didn't like the garlic bread so that was left. We made sure we had room for dessert of course : )
I had profiteroles and Tina had a Sundae..... Delicious.

 I dropped Tina home, she asked me to wait, she popped in her house, out she comes with a gift. I feel so spoilt this week. I got home and opened it up, it was from Tina, her son Adam, Kumi his wife and their little girl Ellie. Such thoughtful gifts. A cat purse, cat notepaper, envelopes and printing pads in a lovely little Japanese bag.

Thank you Tina, Adam, Kumi and Ellie x x x


There was another package on the sofa when I got home, It was from Richard (NAH). It was a lovely card with a cat on, if you haven't guessed it, I love cats as much as dragonflies.
There was also a notelet pack with envelopes, dragonflies on them. Thank you so much Richard. Thank you also for your lovely message in the card, I need a Richard fix, it has been a long time.

I think I will be writing a lot of very special letters : )


I went out to get some shopping as I may not be able too over the weekend. Siobhan and her BF came with me, his first time in the car. We went to Asda, we didn't need much.
The cashier, I think she was trying to be helpful, said "give me the bag, there is a knack of putting eggs in the bag" I thought she meant the real eggs we had bought, I was confused, as was Siobhan, I am 53 years old for christ sake, No, she meant the Easter eggs. How have I managed all these years without her doing it for me????

Mmmmmmm, suppose I shouldn't moan, at least she wasn't chatting to her mates about break times and when she finishes her shift while she is serving me, that is what usually happens.

Any way, back home we go, I feel so cold tonight, I can't get warmed up at all. My shoulder, the right one, was aching a lot last night. I am not sure if there is a little fluid. It is shoulder tip pain. Nothing in the back though. I will take some pain killers tonight and see if that helps.

Chemo tomorrow, I am not looking forward to that, Tess, another blogger has chemo next week. Steve has just finished his.........  TIME FOR A GROUP HUG I THINK X X


Wednesday, 13 February 2013

New car today.

I was so nervous this morning. I was being trusted to drive a brand new car out of the sales room carpark and back home. Siobhan came with me as I felt so nervous. My friend, Mandy, and her husband, Dave, Picked us up at home and drove us to the show room. We looked around outside but couldn't see the new car. We went in to meet the saleman, he was busy doing a handover with someone else.
My appointment was 11 am, we eventually saw him around 11:15 am. This was making me even more nervous, prolonging the agony!!!
We had a wander around when Mandy and Dave spotted the car in the rear car park, there she was, bright red and waiting to go home.
Mandy left about 11:35 am as her son had an appointment. Siobhan and I filled in all the paper work, then it was time.....oooeerrr..... I was going to get in and drive off.
The saleman asked if I would like him to drive her out of the carpark, I said yes. It has been tipping with rain all day, not the most perfect weather to try out a car.
I swapped places with the salesman, this was it, my turn. I had precious cargo, Siobhan, so I needed to be careful. I carefully drove out onto the main road. The brake was a little sensitive, to be expected as Halo is an old bird and maybe I am inclined to be heavier on the breaks because of her age.
I got us home, Went in to get my glasses as I was off to the support group meeting, I forgot I needed them.... D'oh!!
Got in the car, where are the glasses, I know I picked them up. I had also forgotten the paper work for the meeting. So it was back into the house again to pick this up. I still couldn't see my glasses so I picked up another pair. I got in and drove to Derriford Hospital, Guess what I found in my coat pocket??? Yes, My glasses..... !!!
I was a little late for the meeting, what a greeting, so many people worried about me and where I was. Those reading my blog had said I was picking up my new car. It was sad as we had lost a warrior. Condoleneces to his family, such a very sad loss.
We also missed Marilyn and Phil who live in Cornwall, Phil has had chemo and wasn't feeling well. I hope we can make up for it at the next meeting.


Sandra, my lovely warrior friend, gave me a bunch of Daffs and 2 bunches of Tulips at the meeting, how lovely was that, thank you so much Sandra x x



 When I got home I had another surprise, Karryann and Stacey, 2 warrior sisters who lost their dad to mesothelioma sent a sweet little card. People are so very thoughtful. The girls also lost their mum, not to meso, they miss their parents every day. I am so very lucky to have these wonderful people around me, thank you so much girls, it's beautiful x x

I spoke to Kate, our specialist nurse about the Vinoralbine today, oh whoopee, I am in for a treat, it is the worst chemo for constipation so I have been advised to take some Movicol beofre the treatment. I hope that is a good tip. Tomorrow I have Dr's, thyroid test and urine test for the kidneys. The Dr I saw said doing it while having the chemo can give a false reading so I will do it tomorrow.

I will be bumbling around in my new car, I have to get used to her. My darling Halo will be going soon : ( I will miss her so much. We all have to move on, I hope the new car makes me as happy as Halo has.

It's that day!!!

It's arrived, the day I get my new car. I am still very nervous about driving the car but I am sure I will be fine.
I woke up this mornng feeling achy, I know what that means. The mistletoe has kicked in. It gives a flu like symptom, it is a good sign, it means my immune system is tackling it. I felt a little warm as well. I can't take any paracetomal as that brings the temp down and the immune system should do it itself.
I am so pleased it is giving these affects.
I heard some sad news yesterday, one of our group has passed away, a lovely man and his wife who traveled up from Exeter to our group, 55 years old, how is that right?
His poor wife and family, 55 is far too young to leave this earth. Condolences are sent to the family and blessings to our lovely spport group member who should still be here.
I will be going to the meeting this morning.

Tuesday, 12 February 2013

One more sleep !!!

QUICK REMINDER :

SOUTH WEST MESOTHELIOMA SUPPORT GROUP MEETING,
THE MUSTARD TREE,
DERRIFORD HOSPITAL,
PLYMOUTH,

11:30 AM.

WEDNESDAY 13TH FEBRUARY.


I am excited as tomorrow i pick up my new car. I am also very nervous, which i have said before, about driving her out of the showroom car park.... ON MY OWN.... oooeerrr!!!


I had to share this beautiful photograph. Angela lost her lovely dad to mesothelioma last year. She is a keen photographer and also was a big part of the support group calendar. She took this lovely picture of a dragonfly, it is stunning. Well done Angela, I had to share it on my blog as I love them so much.

I sorted out a couple of things today, took Siobhan for her appointment this morning, came back home and then out again to see Kerry. Kerry is collecting ink cartridges for cystic fibrosis, if anyone has any, please let me know and i will pass them onto her or give her details, she may even collect.
Kerry's little niece has cystic fibrosis so it is all going to a good cause.



After I left Kerry,  I went to get Halo washed. We went to a car wash at Derriford, they were very good, cleaned her inside and out. Not sure when she is going but at least she will be clean. Halo and i have been through so much, she has given me so much confidence. I think that is why i am so attached to her...... so it's one more sleep to the new one. My friend Mandy and her husband are taking me to the show room and then they are off to meet their newest family members, 2 cats. They lost their cat last week, she was very old and has just disappeared, We think she went off to die, animals have a wonderful insticnt for what will happen. RIP little Toby, we all miss you. 17 wonderful years with Mandy and her family. You couldn't have wished for a better family.

I took my mistletoe last night and today the injection site is really itchy. this is a good sign, it means my immune system is fighting back. I don't have the redness like I did when I first started it back in 2008. I have faith in it so i do like to keep taking it. i have just ordered my next lot of mistletoe. I am so lucky to be in touch with lots of people who support me with this medication. Onwards and upwards, Friday it's more chemo and I am hoping the mistletoe supports this chemo like it has the others.

Monday, 11 February 2013

Dr's today.

It has been a lovely sunny day today. I am feeling much better, still a little breathless but I think that could be asthma, pick and mix it is at times!!!
I met my friend, Carolyn, for coffee and a cake, I had a chocolate eclair....yummy.....  and it was a Thorntons one.
I got a bit overzealous yesterday, had my breakfast, a bowl of cornflakes and my glass of water with my tablets then thought....Mmmmm.... a nice cup of coffee and maybe a Tunnocks bar and Cadbury's shortcake biscuits. Just a tad too much as I haven't been eating that well but as I am taking steroids my appetite has sky rocketed and little miss Piggy me troughed the biscuits a little too quick. I felt like I was going to hurl and yes, it didn't disappoint. My own fault, silly me.

I had a nice long chat and another coffee with my friend. We went our separate ways and I went off to the Dr's for a check up. i saw a new GP in the practice, she was lovely. She did all the checks, blood pressure, oxygen levels, temp, ears, throat and all the other checks. She listened to my lungs, all sounded clear apart from the asthma wheeze.
I have some more anti biotics as I will be taking the last one tomorrow. I have another course to make sure the chest infection goes and have steroids and anti B's to keep in the cupboard for any other infections that may start. I have to have a thyroid test, this will be after the chemo as it can affect the results and need to do a urine test. Kidneys seem to be holding up which I am pleased with as I thought they were knocked back by the chemo.

So it was back home and then out to do the shopping. I am so pleased to be back on track. I can't help being active, I think it is good for the mind and the soul. I am not a sit around person and love being out and about, especially when it means meeting lovely friends like Carolyn.
Wednesday is not only the first Support group meeting of 2013 but it's the day I get my new car.... whoopeee!!! .......... I am so nervous about driving her out of the show room car park but I feel we are going to have a great time. The only downside is seeing my lovely Halo car and knowing she has to go : (   ........   If I could have both, I would, but I can't, I have to let go.







Saturday, 9 February 2013

South West Mesothelioma Support Group Meeting.


Our first meeting of 2013.

Wednesday 13th February 2013
At the Mustard tree, Derriford Hospital, Plymouth, Devon
At 11:30 am.

Dates for the diary :


Mesothelioma Support Group Dates for 2013

Jan  - winter break

Wed Feb 13th 

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

Friday, 8 February 2013

My journey


I am putting this video back up again. Theo, this is what you have tried your best to take away from me, so far you haven't succeeded. I am ready to make another video of the next 6 years you won't have either.....BRING IT ON !!!!!

Another big THANK YOU.

What a lovely surprise I had today, well 2 surprises.
First was a little box and when opened, it had a beautiful dragonfly necklace in it. This was from my lovely friend Caitlin's mum, June. It is so pretty and how very thoughtful.




The second was a little parcel that said URGENT- FLOWERS on the front. When I opened it it was a lovely flower card from the meso warriors.
I have been a bit tearful the past couple of days, the stresses and strains of family life and juggling that with all the treatment to boot Theo out of the universe gets to me sometimes and today was the perfect day for this. So wonderful, thank you so much all of you. I feel very blessed to have you in my life x x x

Thank you Linda T.

Yesterday I felt a lot better, My stairs aren't the Everest challenge that they were, it just showed what a blood transfusion can do. I still have a rotten, irritating cough. It has been very productive over the last few days, probably because I am moving around more and encouraging the lungs to kick the muck out which is a good thing. Keeping active is important with a chest infection, sitting around makes it sit on the lungs and cause other complications. Breathing exercises are also very good, both creating circulation.
I went shopping with Siobhan yesterday, we took our time as we walked around the shop, I paced myself as I am still a little breathless. When we got back, I had a lovely surprise, the florist had been and my neighbour passed me a lovely bouquet of flowers.
They were from Linda T, my lovely meso sister. Such a lovely thought. I put them in a vase next to Rose's flower's and Judith's beautiful dragonfly card.
Thank you so much girls, Linda you made a good day even better : )

I would like to say a big thank you to all those lovely people who have been keeping me company on FB as I have traveled through this week. It has been a hard week and I appreciate all your support and good wishes.
I am so lucky to have so many wonderful people around me. Many of those have lost their loved ones, like Rose, Judith and Linda, but still find the time to support those who are fighting, I have so much admiration for you as it must be so difficult to live through it again.

Kieran has been with his dad since Wednesday, I felt we all needed a break from each other as living with Theo and his mood swings with the growth can put a strain on us all. It has been very quiet at home, just siobhan and I. We have all needed it. He is back on Sunday which will be lovely.
Next week is chemo week, Friday I start a new chemo, it's also the week I let my lovely Halo go, she has been such a loyal friend to me. I hate to lose her but I can't keep 2 cars, I will be getting my new one on Wednesday, Olivia, I am excited about that. Halo is overheating, I am hoping that she can be fixed and used as she still runs well, problem being that when she gets hot in the engine, I put the heater on in the car, it's on full blast. It is like a heat wave, when it is cold and wet outside, I must be the only person in Plymouth with my windows rolled down.
I will have the luxury of electric windows and central locking, at the moment i do it the old fashioned way, roll down the windows manually and have to lean over to unlock my passenger door to let in my passengers. I have done this for 8 years, I can see me doing that in Olivia for a little while.
Oh well, onwards and upwards, Theo is due another bashing, I need to pursuade him to go on another holiday, take as long as you like Theo have a 10 year GAP year.....please!!!!
I am in no rush to have you back home again : )






Wednesday, 6 February 2013

CT results

I woke up this morning feeling awful. I was feeling hot, although my temperature was normal. I have a productive cough which the remnants of are green so that means infection. I had some anti biotics in the cupboard so I have started them today.
I slowly got myself together and got ready for my appointment with Dr D.

Siobhan and I met Jeanette for lunch and then we all went off to the hospital to see Dr D.
I knew that Theo had progressed, we discussed this last time. Dr D was reluctant to give me radio therapy as it can damage the lungs and as mine are already challenged it didn't seem wise.
He talked about me changing to another Dr at Derriford, she is NHS only. I said I would rather stay with him, he was fine with that.
He had talked to the Dr about treatment, I will be having chemo again. This time it will be Vinoralbine, a 10 minute infusion every week with blood tests at certain intervals.
I have agreed to this, Dr D also suggested a Hickman line, I wasn't too keen on that and said I was happy with the way things were done at the moment.
I am all booked in for chemo next Friday 15th February. All in all it was what I expected. Dr D explained that some cells were stronger than others and different chemos will affect them. I will be losing my hair again but I am not bothered about that, it is the least of my worries and I love my wigs.

I have added the imaging report below.

Imaging Report

History - Mesothelioma on chemotherapy: follow-up.
Comparison is made with the CT scan of November 2012

The left apical mass has increased from 31 to 38 mm.
Left internal mammary disease is stable. The aortopulmonary and left hilar nodal disease is stable. Disease at the left base is unaltered in appearance.

Disease in the right hemithorax has increased in size. Particularly the soft tissue disease seen in the oblique fissure and posteriorly to the thoracic portion of the inferior vena cava.

There is no evidence of disease below the diaphragm.

The tracheo oesophageal fistula is unchanged.

The pulmonary nodularity remains stable.

Conclusion : Progressive disease, particularly in the right hemithorax.




I forgot to mention, Dr D suggested a Hickman line instead of all the cannula. Me, I am not to keen after all the trouble I had trying to get a PICC line in
I am going to think about it, I think it is because they have to get someone out of theatre to do it. If it comes to choosing, I will stick to the cannula for as long as I can and will have to let the drs do it, hoping they get it right first time.

Tuesday, 5 February 2013

2 pints of blood and a packet of trouble please!!!!

Well what a day yesterday, It all started off very well, Bill, the lovely warrior, picked me up at 11am. We went to the hospital and booked in. I asked to use the lift to get to the wards rather than the stairs as I know I wouldn't make it without stopping 3-4 times.
We got to my room and settled in. I forgot, I was asked to do a blood test before so it was back down to pathology for that. Up to the room again, I was told that antibodies had shown up and Dr D wasn't sure what it was so that was the reason for this blood test. It had to go off to Exeter, which is about an hour away, so we would had to wait till it was analysed. I then had to wait to have my cannular put in by an anesthetist, a ward Dr came in to do it. I told her I usually have an anesthetist, she went away to speak to the nurse. In the mean time I had been warming my hands up with a mini heated pad and had been drinking lots of water as this helps the veins to relax and widen. The anesthetist arrived around 2:45pm,  he did a local anesthetic first, I don't always get that. The reason for this he said was if he had to do more than 2 attempts as he knows how it can make someone very upset. One attempt and it was all done, a piece of cake, I didn't feel a thing!!!

He was pleased I had warmed up my veins and said that he wish all patients would do that, I told him that the nurses are the ones who suggested it, it does work.
3:20pm and the first bag was up. Bill and I chatted while all this was going on, talking about having meso and swapping stories and how it affects us. We also said that everything was looking good and going well, no hiccups, famous last words. Bill stayed for quite a while, he went off home as he had an appointment at home with someone as bag 2 was being sorted out. All is going well, no problems, even Dr D called to see how things were going and was told there were no issues. It looks like I will be home around 7:30pm........ WRONG!!!.............. Bag 2 was started, I had a strange cold feeling as soon as it had started, I felt cold float down from head to toe, I didn't take any notice of it. As it is going in, I am feeling so cold, I thought I should buzz Trish, my lovely chemo nurse. She came in and I told her I was feeling so cold, she took my temperature, it was going up, the blood was stopped.
She went out to call Dr D to tell him what was happening. By this time I am shivering with the cold, it's my old friend "Riggers" making an appearance. When the bodies temperature goes up, the body starts shaking and shivering to regulate it and bring it back down. I have had them before.
Trish came back and said that Dr D said to try it slowly, by the time she had come back, the riggers had calmed down. As soon as she started it again, the riggers started again. I told her to flick the lights off and on and I would shiver and could pretend I was in a disco competition : )

Blood was switched off again and it was looking like one pint would be it. The blood life is 4 hours out of the fridge so our time was limited. Trish went out and called Dr D again, He suggested piriton, an anti histamine, and see if that worked. Trish said it was up to me if we try again. I told her I was here already, the blood would be wasted and if there were any problems, we could stop it.
Attempt number 3...... Here we go, Trish started the drip and all was fine, looks like the pirton had worked. We managed to get the whole bag in. Ann and bill returned at around 7:45pm. They had missed all the drama but I had kept them informed.
Phew..... all done, I was now so hot but my temperature is coming down. The reaction to the blood was explained to me, there would have been something in that bag of blood that my body didn't like. I had a bit of a panic when I looked up at bag 2, it said "negative" on it, I am positive. I asked Bill to check and he said yes it says negative. I buzzed Trish and queried it with her, panic over, I can have negative, it is universal, anyone with a negative groups can't have positive. Both bags were negative, you learn something every day.
So, it was off home at 9:20pm, I was shattered. I went straight to bed, I was so tired.
This morning I am feeling much better, I went up my stairs and it didn't feel like I was climbing Everest.

 Cannular in at last.

Bag 1, no issues with this one.


Relaxing in hospital and waiting for it all to be finished.


Sunday, 3 February 2013

Thank you Rose.

I had a very restful day yesterday. I managed to get some washing on and did the dish washer but it was done one thing at a time, that means dishwasher and a sit down, washing machine and a sit down. I didn't push myself at all. Siobhan made a lovely roast the night before. She used Jamie Oliver's recipe for toad in the hole. She used Linda McCartney's veggie sausages rather than real ones as we are veggies. I was delicious, much better than the one I make.
I sat down and had a day of Judge Judy, I love that lady. I fell asleep, the kitties joined me, all 3 of us were pushing out the zeds in the living room.
The was a know at the door in the morning, I opened it to find a lovely little bunch of spring flowers, they were from Rose, my lovely warrior sister and one of my Aunties who watches over me. Thank you so much Rose, they are beautiful.



Thank you so much Rose, there was a little box of chocolates as well. What a lovely thought x x

I have got myself washed and dressed and feel like I have done a triathlon. First, conquering the stairs, coughing and breathless at the top, a feeling of light headiness and wanting to throw up.
Next, getting my clothes and walking to the bathroom, same thing..... and next getting down stairs to make lunch.  Kitties excited as it's their lunch time so feeding them as well. How can doing such simple tasks make me feel so exhausted. I hope that detailing this helps anyone else who is experiences symptoms like mine. Tomorrow I have the blood transfusion, I am so cross that I will have to ask to use the lift and not the stairs when I get to the hospital. I think we all know the frustration of not being able to do simple tasks.

Saturday, 2 February 2013

Prof's paper.

I was so pleased to hear that Prof had published his paper on chemoperfusion. He has worked so hard on this and given a lot of people hope and extra time.
I have a copy of it, it anyone would like it, please email me at Phu_phita@hotmail.com, I will be happy to send it on.
I was even more thrilled to see when the final paper was published.

I am figure 1 in the paper, the 49 year old woman. Evn looking at it now, I am amazes at how much difference there is in the 2 picutres.

Received August 31, 2011; revision requested November 10; final revision received April 7, 2012; accepted May 1; final version accepted July 24.

Final version, 24th July, my birthday, I am hoping that is a good omen.

After having the systemic chemo in the UK and the chemoembolisation/chemoperfusion in Germany, I have to say that the Greamn one was much kinder to me.
I tolerated the chemo so much better. I had nausea and tiredness and that was about it.
With the UK one, it hit me so hard, my poor immune system was stripped to the core.

I am hoping so much that someone, somewhere will se the potential of this treatment, it will give meso patients another option. It is a start, a platform to begin a new trial.
There is still a lot of work to do but I will always back this treatment, it saved my life.