I have not posted much in the last few days so I thought it was time I came back to add more.

It is now 12 days or so since I had my first chemo session. To be honest with you I was petrified when I went into the chemo suite at the hospital for that first time. I had heard all sorts of horror stories: how bad it was to take it in the first place, how bad and nasty you felt, how bad the side effects were etc.

I have already mentioned the actual session in a previous blog. No, it was not as bad as I had been lead to believe. Any fear was minimised by the calm and caring staff.

The after effects and side effects have now been with me for the 12 day period. The worst has been the absolute exhaustion and fatigue. I have been so tired that on many occasions I fallen asleep in mid email - yes nodding off while actually writing a message! Can you believe it? As for late nights they are a thing of the past - I cannot keep awake after 8.00pm - it is agood job I can record my favourite TV programs as otherwise I would miss them. I find my self waking up after sleeping for 45 minutes or so - not going to sleep, waking up. I have no recollection of going to sleep just coming to again.

I cannot describe how tired I feel. The exhaustion is with you all the time. I go into a deep deep sleep but my mind is till active all the time. What does that mean? Well I was fast asleep the other night and I was dreaming I was reading the paper - I woke up. I was sitting up in bed, turning the pages of the newspaper which was not there - weird. The same sometimes happens with talking. I am fast asleep in the lounge and I was convinced some one was calling me. This time I replied by saying "I am here" - I woke up and Sarah was laughing her head off. She had never heard me talk so clearly in my sleep before in spite of the practice I had had as a Lawyer.

I am relieved to be able to say that I have not had any nasty side effects or after effects at all. The anti side effects drugs worked as they were supposed to.

I have also felt better - in relative terms perhaps but better. While I can say that I am not looking forward to the next Chemo session my fear of it has virtually gone. This is what is going to get me through this thing. So give me a great big cheer for the next chemo session on the 8 May

I'll be back

I have been amazed at the support and help I have received from friends and family but have so far not mentioned the Doctors and Nurses and Carers who are also part of the journey.

So far I have seen 6 Specialists. There were two Ear Nose & Throat specialists who were in charge of the the thyroplasty operation. There was also the Ward nurses looking after me both before and after the operation. The amount of staff in the operation theatre were too numerous to count. All had a function and all performed that function with what appeared to me quiet professionalism. They all seemed to know precisely what to do and when - after I time I was given an anaesthetic so lost track from there! The anaesthetist had his own assistants as well. The nursing care in the Ward was also of the highest calibre.

I also saw a Heart Consultant (3rd Specialist) at the beginning of the road: he had his team. I have also seen a Voice Therapist to get my voice to as close to what it was before all this started.

The teams dealing directly with the cancer side of the treatment and the cancer diagnosis make up the rest of the medical teams. Three Specialists. Nurses. Carers. Macmillan Nurse. Chemotherapy Nurses and General Support Staff. All have helped me. All have explained things clearly including some things a hundred and one different times: you tend to get so much information that it goes in one ear and out the other. They have shown limitless amounts of patience and compassion. I guess again it reinforces the goodness of human nature.

I am not going to be cynical here and say it is simply their job. It goes further than this. I have been struck by the tangible desire from others to help.

Lance Armstrong's books and the various other books I have read do speculate whether the cancer patients attitude to others is changed by the experience of the illness: from my perspective I will say it does change your perspective: I think a change for the better.

Finally thank you to my GP and the surgery: the GP often gets left out of all this. Sometimes the principal caring is by the hospital and staff but not always. There is also a pharmacist attached to the surgery - I can renew my prescriptions by email. It does feel strange when the pharmacist knows your name. Your Pub Landlord yes - but not your pharmacist

So a BIG THANK YOU from Sarah and I to all the medical people who are involved in all this at the moment and who remain to get involved.

I'll be back

You will have seen at the top of my site some photographs of Sarah's and my parrots. We have three: two African Greys and one Black Headed Caique - he is called Jasper. For want of a better name!! Jasper Carrot?! comedian and he is just that.

Any way this post is not really about Jasper but about the frienship and support that being part of something can bring you.

I have been fascinated by feathered birds all my life and a very close friend of mine breeds them.

We decided to see if we could hand rear a bird from the egg. My friend had just had a clutch of Caique eggs laid and only one survived. I said I would take him on when he was old enough and my friend would do the hard part the hand rearing.

At the same time Sarah joined us to a Caique website. This site is a forum for sharing info and giving assistance to Caique and other parrot owners. We got to know a lot of people on the site and eventually we wrote a story about Jasper growing up from hatching onwards and posted regularly on the site. We attached photographs and made a light hearted thing to entertain as well as, we hoped, show that it could be done. It was quite succesful and I am told provided much entertainment. Nearly as much as the little dude gives us!

Sarah and I became firm friends with all on the Caique site. When I developed cancer I found it difficult to spare the time to go onto the site. When I wasn't having tests I was sleeping!! - or thats what it seemed. I was told I was missed. The Caique site members wanted to know where we were what we doing and how we were. When I told them, they were shocked. I then started to get supportive messages and culminating in receiving a message of support, encouragement and friendship from the site members.

See the link for some of these messages of support  

http://www.baywood-pets.co.uk/guestbook/get-well-david/index.php

It was clear that, apart from the direct support I have received from family and friends I have met, there are friends (who I have never met face to face) who are supporting me and helping me. This is a joy to me and fills me with emotion whenever I think of it. The fact that people will go the extra mile to help someone they have not met is wonderful - it restores your faith in human nature. The help from friends and family you see on a regular or irregular basis is no less touching but is easier to explain. From those you have not met is awesome. So thank you guys for your help support and strength - it will make me fight harder to lick this thing.

To everyone else out there think of this - the power of your support to help others is without limit. Practice it as many times as you can and never let it go.

The link to the Caique site if you want to look is

http://www.caique-crazy-capers.co.uk/

I'll be back!

I had my first Chemo session yesterday. I have to study the correct spelling of chemotherapy - I thought it was spelt like that, but I think I may be wrong and it is spelt chaemotherapy.

We arrived at the hospital at the appointment time of 9.30am to see the Specialist who briefed me on what to expect. I was introduced to the support nurses and the staff generally - all very friendly.

I was told that I would be having a broad spectrum treatment because so far the medics have been unable to determine the primary source of my cancer. I was sent off for blood tests - all came back clear - and was then told to come back at about 11.30am to have the chemo session. I had a very helpful discussion with the a nurse.

We went off for a coffee and arrived back in the department in time for the appointment. We had to wait our turn and went through at about 12.15pm. We went through into the department and found a chair which looked like a giant electronic recliner. After going through all the identification checks I was given a saline drip and drugs for anti-sickness and one to stop/reduce any allergic reactions to the drugs. They told me about 2 hours in total.

We started and a volunteer arrived seeing whether I wanted any sandwiches for lunch so I chose cheese sandwiches an orange drink and a pot of chocolate mousse! Sarah and I shared this. The nurses were satisfied that everything was going correctly and apart from checking up from time to time I was not pestered at all. I was reassured that the nurses were there and visible if you needed any help. Indeed before being given the chemo drugs, the drugs had been checked by a total of 8 people! This was to make sure that I was getting the correct ones. The identification checks and controls are very rigid. There is no chance of the wrong medication being dispensed.

When it came to starting on the second chemical all the identification checks etc were repeated and we started on the second. The rate of flow of the second chemical was considerably quicker than the first one. I felt a cold sensation around the needle in my hand and a bit dizzy, so the nurses reduced the rate of flow down quite considerably. What should have taken half an hour took just over an hour and a half. This was finished, I was given more anti-sickness drugs and immune system boosting drugs and allowed to go home.

We got home about 5pm - a long day. Side effects today are mainly tiredness, a bit of forgetfulness and a sicky feeling, otherwise not too bad. Certainly not as bad as I had been anticipating! I was very apprehensive before hand. I'm hoping that this is the worst it gets!

I am back to the hospital today for an injection and also to have my staples removed from my neck - see the blog about my operation.

The next chemo session is around about 8th May.

I'll be back!

Having checked in to the hospital, there was only a short wait before doctors and nurses a plenty were buzzing round David's bed. They asked lots of questions, prodded and poked before it was time for me to leave.

After a grim wait, I finally got to the ward at a little before 2pm so that I could find out how David was. Those final minutes before 2pm seemed to tick away so slowly! As it happened when 2pm finally rolled around, David still wasn't back from theatre. It wasn't long however before he was wheeled back in, a little bleary eyed but smiling and waving. I wanted to ask 1001 questions, worse still, David wanted to answer them - he forgot himself a couple of times and actually did utter odd things. I had thought about this already though and although I did ask plenty of questions, I had taken a pencil and pad so he could converse.

The operation was successful, although they had to do a general anaesthetic at the last moment. There's 2 long days ahead or David. He is not supposed to speak and he has a long, long list of after care instructions including special food, steam treatments for his voice and other things. If I get my way, I'll spoil him rotten with all his favourites! It seems only right to do this after he's had such a terrible couple of weeks - a small thing in the grand scheme of things.

What David did say, or rather scribble down was that he was feeling better than he had done for weeks. His voice was considerably stronger - he'd been asked to say a couple of things back in recovery! His hearing was also better, having had recent difficulties. The pain had subsided, this though I think, is a result of the increased morphine dose.

Visiting time quickly came to an end, so I dashed off for a spot of dinner and a spot of calling people/texting others with updates. The 2 hour window went by quickly and I was able to dash back to see him. I got there to see a different man from that which I'd left at 10am in the morning. David was very bright, had a brighter complexion and generally looked well. He'd eaten plenty and devoured the creme caramel that I'd brought along for him as a little treat. He was very envious when the gentleman in the neighbouring bed had a second dinner so I managed to get something extra from the nurses for David too. This was polished off in no time. He was sat on the side of his bed happily "chatting" away with his pad and giving instructions on things for me to do for him. His dressing came loose through the evening revealing a wound of approximately 2 inches. It was neat but I joked he looked a little like Frankenstein! I got a playful swipe around the head for that

This morning I got a text from David to say that his sleep was deep but a little disturbed. The pain wasn't too bad - finally I think the Morphine does is correct - his wound had been draining okay and hopefully he would be discharged around lunchtime.

I'm counting down the minutes.............

I have seen my specialist again and, apparently, there is some difficulty in the results of the tests in determining where the primary cancer is. This is not particularly good news as, I am told, it means the Doctors cannot be too specific in the chemotherapy treatment chemicals. I will be prescribed broad spectrum chemicals. My chemotherapy starts next week - Friday 18 April. I will be glad when it starts because we need now to be bashing the living daylights out of the cancer. The chemicals being used are Docetaxel and Carboplatin.

I am anxious to get it started now as it does seem a long time since the original diagnosis was dropped on me. Bring it on and lets attack the cancer!!

Tomorrow 11 April I go into the hospital to have the voice box operation to improve my voice. I have mentioned to you that whatever is in the lung has trapped one of the nerves to my voice box causing my voice to go very quiet, breathy and at times uncomfortable. The operation - thyroplasty I believe - will hopefully make it easier to talk. The working side of the voice box is working too hard at the moment so packing is put in the voice box to allow the good side to work less hard. It therefore improves the voice as a consequence. I am no Doctor and this explanation may be far too simplistic to satisfy the Doctors reading this - if there are any reading it!

I come home on Saturday and I hope my voice will be a lot better. I am not allowed to talk for 2 days so will not find out immediately. Silenced for 2 days - some might say that is good!!

It has been a hectic week as always. Spent much of the week trying to get the level and strength of my medication correct. The Macmillan nurse has been tremendous help here - liaising with GPs and sorting out dosage. They are wonderful.

I need to say thank you to Frances Songhurst. She is a therapist. She has helped me in the past and has and is helping me now. The power of the mind needs exploring to be believed. She pulls out the postive thoughts and strengths to attack the cancer.

See you next week.

I'll be back

Not many people have asked how I feel mentally now that I know I have cancer. One or two have but not many. I think my reaction now after a bit of reflection is that I have to accept that I have it. If I don't accept that I have it, I can't fight that which I don't have.

My initial reaction was somewhere between absolutely total surprise and anger. Surprise that it is happening to me and anger that I could not stop it invading me. As I do this note I do not know what caused the cancer in the first place; whether I ever will find out remains to be seen.

I have periods of blank despair. I don't know what to do, I don't know what to think, I don't know how to react, I don't know how to move. It is as though the despair shuts you down. I guess that it is that despair which I have to get rid of to keep the positive thoughts, actions and drives in the forefront of my conscious and sub-conscious mind.

I do not know whether I am particularly religious. There have been times in my life when I have felt more faith and there have been times when I have had no faith. At the moment, I don't know where I am on this but I have to make a conscious thought and belief as I am going to be beat this thing and get better. Whether this is any different than being religious I do not know; if you have faith in getting better this might be the same thing as a belief in whatever religion you follow. I will no doubt have further thoughts and possibly discussions on this aspect.

I have recently read a book written by Lance Armstrong who is a professional cyclist who had cancer in the 1990s. The book is about his fight to beat the disease. He did beat it. What emerged from the book was his tremendous focus and determination on beating it and getting back on his bike. The highlight of the book was when he describes winning the Tour de France after he'd beaten the cancer. Whether I have the same single minded focus of a professional athlete, I do not know, but I do need to develop the singleness of purpose to overcome the cancer. Sarah thinks I have because I'm a lawyer! I can see many arguments but I won't go into that!

I am also trying to keep my sense of humour. One thing that I find very difficult to deal with is the expression on people's faces when they find out I have cancer. I invariably try and lighten the mood with the sense of humour. That works for me and it works for most other people, although it does seem to me sometimes that I am comforting them, not the other way around!

I am strengthened by the incredible expressions of support I am receiving, both on this site and in other ways. People I haven't seen for years are getting in touch with me. My family and friends are supportive. My wife Sarah is an absolute rock, she is always there for me and is total strength.

The Macmillan Nurse also came to see me for the first time yesterday. I had been referred to them by my friend's wife herself a Cancer Counsellor. Her and her husband have been very supportive. The Macmillan nurse was very helpful. I now have a contact within the Health Service that I can get in touch with for help and advice at any time. Her greatest contribution so far has been to put my medication in order as I was getting a bit confused with dosage.

My family and my many other friends have also been supportive in different ways. Some have offered to cook on a regular basis for us, others have offered to look after our parrots and others have just offered their unconditional help.

I'm off to kick this cancer into touch. I'll be back!

It seems ironic (and not in a good way) that the date we first saw the Cardiologist was Valentines Day.  Personally, I think that he (the cardiologist) had a pretty good idea of what he thought might be wrong after he had examined David.  He immediately ruled out heart problems, which at the time felt like a relief.  Quite what I thought the pain might be caused by, I haven’t a clue.  It certainly hadn’t crossed my mind that it could be cancer.  The pain had been that bad that David had barely had 2 hours sleep per night.  He ordered David to take a number of tests and it was these that lead to the diagnosis. 

We visited the hospital on 18^th February for David to give blood to carry out testing – whilst I can’t recall now all the tests, what I can tell you is that it was practically a full blood MOT.  I remember going in with David whilst he had the blood taken, his voice was still not particularly strong.  They seemed to just keep lining up the little blood sample bottles until David asked whether they were going to leave him with any blood to take home.

Next on 22^nd February David had an x-ray on his shoulder then we wrangled a bit with BUPA as they were being a bit awkward about his bone scan.  They wouldn’t cover it if it was just a routine bone density test.  This made me quite frustrated.  After numerous telephone calls I managed to find out that it was a Nuclear Medicine Bone Scan, so BUPA would cough up – phew!  So on 28^th February we went back to the Hospital for this scan.  Like many other scans, David had to be injected with some form of radioactive matter, which needed to circulate round his body for a while before the proper scan could begin.  After the injection they took some initial pictures to see how well the fluid was circulating through David’s body.  We were then sent down to the x-ray department for David to have an x-ray on his chest.  It was all very efficient and quick.  After this we had to sit and wait for about an hour before the scan would take place.  The scan itself took about 45 minutes then we could leave, there was no special after care advice, we could simply carry on as before.

It seems so long ago, yet it is only just over 3 weeks ago since we learned of David’s diagnosis on 4^th March.  Since then we’ve kind of been in limbo – we know that there’s this nasty presence, just lurking in David’s body and making him feel lethargic and lifeless and making our hearts break.  We’re told how well we’re coping.  The reality is we can’t go around crying all the time.  That’s not to say that I haven’t done this.  I feel like I’ve cried more in this last 3 weeks that I’ve cried in my whole life.  It’s good to cry, the release makes you feel better, but it’s draining as it sucks the energy from your body, makes your eyes heavy and your heart heavier.  There does come a time though, when the tears begin to dry up.  It’s not because you feel any better, it’s just that you learn to deal with what you’ve learnt. 

“there’s no condition that man cannot learn to deal with”

I like quotes, and that was a quote on my calendar from a week or two ago – it seemed almost to have been written for me. 

5^th March we went for a CT Scan, 6^th March back to the same hospital for a biopsy and yet more blood tests.  The doctor was very helpful and explained to us that it would be easier for him but less good for David if he could take a biopsy from David’s neck.  He quickly palpated the area and then used his ultrasound machine to check around David’s neck.  He found a small node of no consequence on David’s thyroid.  Strike one for the good guys – it was better news for us, as if the cancer had spread to David’s neck it was not going to be good news.  At this stage, the doctor placed films of David’s CT scan onto his light box and we saw for the first time the clear evidence of the tumour on David’s lung, as well as seeing the tumours on the his ribs.  Whilst it was horrifying to see this, it was also interesting in a gruesome kind of way.  David’s many years of hard work in the gym were clear as the specialist pointed out the impressive bulk of muscle mass around the shoulders and back. 

The specialist to cleanse the area had to paint David’s back with an iodine like solution – to lighten the mood we joked that perhaps he shouldn’t give up his day job to work as a tan artist!  I think this helped as little as it took David’s mind away a little bit from the enormous needle that was to take the biopsy.  Due to where the cancer was, the specialist had to try and reach under the scapula to do the biopsy, to do this, David had to hold his arm across his chest to open up the area.  The area had been numbed a little before this, so although David could feel the needle poking around inside, it wasn’t actually as painful as he thought it might have been.  Two samples were taken ready to be tested.  We got to see the samples before we left, as they came direct from the bone, they were like very small white worms.  Normally, it would be very difficult and indeed painful to take a biopsy from the bone, but due to the damage from the tumour on the ribs, the bone tissue was very soft and weakened.

We expected having done what seemed like every test possible that we would get a full prognosis at our next meeting with the specialist on 11^th March – unfortunately it was still too early and more tests needed to be done.  We were bitterly disappointed and also upset.  All we were told was that some radiotherapy could be done to help alleviate the pain and that would probably been about another week away.  Our shock and horror must have been evident.

Just a week since the diagnosis, many things had happened.  David has started taking morphine for pain relief.  It was good and bad all at the same time.  The morphine took the pain away and enabled David to get sleep – GOOD, but gave you constipation and sickness at the same time – BAD.

We mentioned previously that David had lost his voice whilst we were on holiday; initially there was just nothing there.  He could hardly whisper, it was super quiet.  We initially dismissed this as nothing serious, but after it didn’t come back we organised to see an ENT specialist.  We saw him on 12^th March.  The specialist was really nice, someone who made you feel like you really liked him before he said anything.  He looked very cheerful, smiled a lot and just had a nice manner.  This all helped as this made our consultation go all the more smooth, even though what he had to say wasn’t what he had hoped to hear.  The tumour was pressing on the nerves to the vocal cords. 

He got David to do a couple of exercises making “eeee” noises then used a mini camera to look at David’s vocal cords.  From this examination he could see that David’s left vocal cord wasn’t moving and although David’s voice was now considerably stronger than it had been when he first lost it, the lack of movement in the vocal cord was a problem.  The right vocal cord had now compensated for the left hence the improvement in voice. A procedure was outlined which might possibly improve the quality of David’s voice but he felt the voice wouldn’t ever go back to what it was.  I asked if the tumour shrank, would the voice return.  He said that he couldn’t rule it out, but that he was doubtful.  Although this all sounded quite depressing, he was very upbeat and said he’d do all he could to help.  He then also went on to explain more about the medications David was using and was in general a kind ear to listen to our woes.

On our way to the ENT session that morning we had received a telephone call asking us to go for Radiotherapy planning that afternoon.  At that session David was tattooed and marked with indelible ink so that each subsequent radiotherapy session the rays were aimed at exactly the same spot.  The radiotherapy would begin the following day.  The radiotherapy was palliative only, which meant that it was only to give pain relief rather than to “cure” the cancer. 

We went on the 13^th, 14^th, 17^th, 18^th and 19^th for radiotherapy sessions.  They didn’t last long.  A minute and a half on the front and then the same on the back – over and done very quickly.  All the nurses were very friendly and we met some lovely people who also had cancer or were supporting someone with cancer.  As a result of the radiotherapy, David’s pain decreased and he was able to reduce his morphine does.  However, the radiotherapy made David overwhelmingly tired and I began to feel like I was living on my own, or with a ghost.  When David was awake, he wasn’t saying anything and sitting in silence.  This was extremely difficult.  I was still grieving for David’s lost health and the future that was now uncertain.  I still am grieving for those things.  I probably always will, but I’ll have to come to terms with that. 

Finally on 14^th March we met a new specialist who appeared to have a more positive outlook and whilst he still couldn’t pin down the primary cancer his thoughts gave us more peace of mind than we had previously.  He requested more tests, a Renogram – that would give us an indication of how well David’s kidneys were performing and whether he would be able to go through chemotherapy.  He also wanted a PET Scan – which could show a little clearer if the cancer had spread to any where else and I’m also guessing that it might give an indication of a primary.

15^th March we went out to a friends for dinner, it hadn’t been a good day, the effects of radiotherapy were showing on David and he was experiencing nausea.  Unfortunately the meal made David quite ill and rather down hearted.  We didn’t realise initially but David’s taste buds would change dramatically.  That night taught us three things – one, was that garlic, whilst being a friend to our heart and circulatory system, was no long a friend to David as it caused waves of sickness.  Second was that oily dressings were also a no go area. The final thing we learnt was perhaps one of the worst for David.  Wine was no longer a pleasure for him, it was now tasting very acidic and unpleasant to drink.  One of life’s pleasures had been taken away with that 6 letter word and the catalogue of medicines which he now had to take.  It seemed hard to think that just 6 months previously, he took no medicines at all and now he was popping pills just to try and live a comfortable pain free life.

The Renogram was scheduled for 19^th March and the attendants told us that it would probably take around an hour to complete as most people needed to have a couple of injections.  We got there in good time expecting to be there for the duration.  Thankfully the renogram only took about 25 minutes, David’s kidneys were draining properly and as such the test was cut short – some better news at last!

This brings us up to 31^st March, the PET scan.  We had to go to a different hospital for this test and parking was something of a joke.  I had to drop David off and then park in the furthest, darkest area of the hospital campus possible then do a mad dash to get back to see David before his scan started.  I only just made it as he had just been called through as I raced in through the door.  We’d both been worrying about the PET scan as David had to lie very still on his back whilst the scan was done – this would normally be very difficult due to the pain he was experiencing.  Thankfully a friend of ours who works in Oncology had been able to organise a sedative to help David relax whilst the scan was done.  When he went for his scan another radioactive dose was given to David and he then had to wait for approximately 45 minutes on his own whilst the substance took effect.  Apparently this substance was at it’s most radioactive during this timescale so even the nurses vacated the room and left him sitting there on his own.  He says that he made some crack about being green and glowing – of course the nurse said that she wished she had a pound for every time someone had said that.  I guess she could have began her own retirement fund.  Then after that the scan took about an hour.  I’ve given a link below with further information on the PET scan.

The results of the PET scan should be available to the Specialist after 48 hours, so I organised the next appointment with the specialist for Friday 4^th April around lunchtime.

That’s all folks!