Friday, April 13, 2018

The Importance Of Family

Its now been exactly one week since my last chemo and what a week it was.   It was a reduced chemo dose because of all the terrible side effects I have been having. I was accompanied by sister Jackie and niece Hayley.

The chemo was all done by 15.00 and I felt really good so we decided to head off to Oxford Street as I wanted to buy a jacket from a designer shop, which makes a nice change from the charity shops.

We walked to the tube and I felt really good and only getting slightly out of breath.

It was lovely to go to designer shop and be treated like a king, the service was fantastic.

Rather than catch a tube or bus back to the hospital (where the car was parked)  we jumped in a London cab, it was the cleanest cab I had ever been in, it was white rather than black as he also used it as a wedding car.  The fare back to the hospital was £19.50, I gave him £25.00  but he said that's far too much and gave me a fiver back, I said that's the tip, he said no thanks you keep it !

By now it was getting a bit late and was rush hour time so rather sitting in traffic we decided to eat in London and head home a bit later.

We went for a walk through Hammersmith with moi wearing his new jacket !

I love it.

We spotted a nice little Thai restaurant but it wasn't due to open for another hour so we popped into a pub for a swift half or two.

We nearly stuffed up as by the time we went back to the restaurant there was only one table left, it was rammed.

The waiter/waitress was a full on Thai Lady boy and the food was fantastic.

Because it was a Friday evening the restaurant was full of workers from local businesses and the hospital.

I witnessed an amazing site whilst in the restaurant......not one person was on their bloody phone, they were talking to each other, it was a lovely thing to watch.

It was a really strange surreal day, we had a fantastic day out in London but in the middle of it all I had some chemo.

Saturday morning I went car hunting with brother Russell, I need a car as the others all work so in the daytime I'm home alone. I thought about getting a little Fiat 500 or something to buzz around then thought to myself, Im not going to be around for too much longer so why not treat myself , and treat myself I did, I bought a beautiful Jaguar XF . It is stunning although I am a bit worried about the cream leather interior especially with the dogs and the amount of mud around at the moment...It can be cleaned!

At the moment Im home alone, brother Russ and wife Tracy have taken off on a 3 week holiday to the states and a cruise to Hawaii, Im not quite alone as my niece Kimberley has moved back in to keep an eye on me.

This of course brings me back to the to the title of the blog ...The importance of family.

I was talking to Kimberley , she said to me what would you have done if you didn't move in with us?

It really made me think, what would I have done, Im not to bad now and can cook, and clean etc, but I also know that Im going to get a lot worse and will probably end my lovely life in this house.  Also I have been here since the beginning of November, what would have been the alternative, Spain would have been impossible, the dogs have been looked after, which was always my biggest concern I have been chauffeured around to various hospitals by family.

I am so so lucky and I still cant imagine what I would have done without them, I owe them big time.

I had some more sad news this week, Elaine's dad died in Macclesfield hospital, he was admitted about three weeks ago after collapsing at home but unfortunately never came out again.

Love your family people xx

Thursday, April 5, 2018

What a Difference a Week Makes!

Last Thursday I visited the lung oncologist in London and I felt like death, she gave me some new drugs including the good old steroids, some anti depressants and anti emetics....What can I say....WOW!!

Its been a transformation, my taste buds are back, I have been eating for Africa, having a good drink as well, not excessive but its so nice to taste a nice glass of red wine! 

I know its all down to the drugs, but it feels so good to have a zest for life again.

Unfortunately it all came back to reality yesterday when I received her latest report through the post, when you read it in black and white that you haven't got long to live it is very sobering.

But there is nothing I can do about it, so Im just hoping that the chemo I start tomorrow will hopefully give me a bit more time, I know it cant be cured but a bit more time would be nice.

As I said earlier its been nice to get out and about going to nice restaurants and bars again.

Another high was catching up with my old mate Paul Young who I worked with in the 70s at Vauxhall Motors.

We have always kept in touch since then, moreso lately since his wife succumbed to brain cancer just after Christmas, she was only 52!!

The photo taken below was taken in 1984 when he was touring Australia, I chauffeured him around Sydney in my little Suzuki Sierra as well as attending his sell out shows and going to the after show parties.

He came to the house in Milton Keynes bringing me a mega Lindt Easter egg and flowers for Tracy.

Me, Tracy, Paul and brother Russell

He still looks like a rock star, bastard still has all his hair! 

Tracy was a fan back in the day, and was melting on the floor!!!

Hopefully we will keep in touch and I will be able to go to some of his gigs and see him perform.

Tomorrow its off to Charing Cross to start chemo....

Wish me well XX

Friday, March 30, 2018

Thursdays Visit To The Oncologist

Last Thursday I caught the train to London to see the oncologist, Kimberley came with me for moral support and hang on to me if I went wobbly.

I must have been looking crap as nice young people gave me seats on the train and the tube.

I was ok walking but the stairs on the tube absolutely  knackered me .

It was a different hospital this time, St Marys in Paddington, it was nice to pass the narrow boats in Paddington basin, it bought back fond memories of the long hot summer of 2013 when we spent a month moored up in Paddington basin. We couldn't hang around though as it was pouring down with rain so we headed to the hospital.

The oncologist was actually based in the private Lindo wing , this is where all the royal babies are born , in actual fact Prince George  William and Kate's first was born whilst we were there back in 2013.

This is the entrance to the Lindo Wing , I took this photo when Elaine's sister, her nieces and great nieces paid us a visit back in July 2013.

Inside actually isn't too flash, but being private the service is great, no hanging around waiting etc.

We spent about an hour and half having a chat plus being examined and having blood tests, plus looking at all the previous scans.

My Cancer is Metastatic non small cell lung cancer T4N1M1c ( bone, brain, liver and adrenal  metastases)

Basically this translates to Im Fcked !

I have always asked her to tell me the truth and that I wanted quality over quantity of life and originally thought that 2 to three years would be doable....... wrong!!!

Originally she had thought that radiation therapy was going to be an option plus maybe immunotherapy  if that didn't work,  but and its a big but due to the type of cancer I have, and it gets a lot more complicated re markers etc that neither option will work and im at the end of the line!

I did agree to start a low dose chemo which will start next Friday,  it wont cure the cancer but might make the next few weeks, months a bit more tolerable,  the big problem is that its inside the liver. 

I wasn't expecting such bad news , so I have gone from thinking of trips in the UK and maybe to Spain to planning end of life care etc!

Im having a visit from the local hospice next Thursday so that will be good, Im also on a limited time now to sort out my stuff in Oz and Spain, the flat still hasn't sold in Australia yet but it is now getting nibbles as the price has been dropped, this should attract the bottom feeders looking for a bargain.

Spain is pretty easy as I rent the villa and have a lease until December, so the  family can go down in the summer  and sort it for me, there is some nice stuff down there but nothing of great value.  I have got the Jag for sale but once again will have to drop the price to attract the bargain hunters.

All in all a bit  of a shit but am very happy that I retired at 55 and had probably more adventures than some people that carry on to a ripe old age and of course was accompanied by the gorgeous Elaine  until August 2016.

I must not forget the brilliant time we had in Oz from being working holiday back packers in 1980 right up until we left in March 2012, it was a great place to live and was indeed the lucky country.

Nothing else to add really, she loaded me up with lots of new drugs that should hopefully give me a bit of spark over the next few months, she also added go and drink some Guinness to get some iron in you!

The trip back to Milton Keynes was pretty horrible as it was pissing down with rain, but once again the old boy got offered seats on the tube and train.

Happy Easter Guys XXXX

Tuesday, March 27, 2018

Bailing from Mojacar !

The Mojacar adventure didn't go quite as well as I planned,  I do tend to jump into things rather than procrastinate, but on this occasion I wished I  would have procrastinated.

I did get to see the boaters who are wintering in Mojacar but didn't join them for lunch or dinner as I felt constantly nauseous and on a couple of occasions was sick.

I also envisaged walking along the prom stopping at bars for a coffee or beer, the reality was I was too tired to walk more than a couple of hundred of metres so that plan was scrapped also.

I have spent a few winters in Mojacar and had forgot how cold it gets at night, the villa was like an ice box,  I had the heaters running for 24 hours a day in the upstairs room and my bedroom, it was a joy to go to bed with the electric blanket on!  The boaters bought me food packages at night because I was too weak to cook anything other than a basic spag.

I did manage to sort out the insurance on the Jag and did an advert to sell it on the local forums.  I would love to keep it but I just dont know when or if I will be back so it will just sit in the garage at the villa, its OK at the moment as the boaters are using it which is what I want , but they are all heading back to the UK now so it would just sit and gather dust which is no good to it at all. plus I still have the little Citroen C3 if I do manage to go back.

I started to feel worse and was starting to get worried about getting ill whilst down there and not being able to return to the UK, it was my biggest fear.

After nine days, I thought bugger it and booked an escape flight for last Thursday with Ryanair, I chose Ryanair as they fly from Murcia to Luton, so a little bit further to drive at the airport at the Spanish end but so much closer at the Luton end.  I didnt want a repeat of my nightmare journey on the outbound leg going through Gatwick!

24hours before I was due to leave I received an email from Ryanair ....your flight is cancelled, would you like a refund or book another flight?  I quickly checked the Ryanair website there were no other flights, I was physically sick, my fears had come true, I was feeling like I wanted to die and couldn't escape the country,  I rang up brother Russell to see if anyone could pick me up from Gatwick as I couldn't face the thought of getting from Gatwick to Luton on the slowest train in the world again, He couldn't but Tracy could, five minutes later I got one of the last three seats on the Easyjet flight from Almeria to Gatwick.  Roly was going to give me a lift to Almeria airport with Andy riding shotgun, they were picking me up at 09.00 the next morning, the boaters to the rescue again.

They arrived at 08.50 and let themselves into the villa, I was stuck halfway up a flight of stairs trying to get my suitcase to the front door, I just couldn't make it so Andy came down and took it off me and put it into Roly's car..... how pathetic had I become!

We drove away from the villa, 200 metres later I asked Roly to pull over so I could be sick. what a joy this trip was going to be!  Without going into too much details about my puke, it was different, it wasn't food it was crap in my lungs like phlegm, but loads of it and very white.  It was usually proceeded by coughing, once it was gone I would feel better until the next cough came along. Im guessing it has something to do with the tumours on my lungs and hopefully will find out soon.

Andy came with me to the check in and I asked for help to to the plane,  wow what a difference to Gatwick, I was wheeled past security and passport control albeit a basic check, they then took me out to the tarmac where I sat in the wheelchair for a while before being loaded onto the scissor lift lorry and loaded straight into the plane.

The flight was perfect and smooth and I even ate some noodles and had an orange juice with no side effects.

When we landed at Gatwick those of us who needed assistance where asked to stay on board.

I was the youngest of the mostly elderly people on crutches etc and Im sure they thought I was faking it!

Once again it was straight off the plane into the scissor lift truck, once on the ground it was into a minibus who took us to the terminal,  once inside the terminal buggies were waiting to take us the rest of the way outside the airport,  again it was a very quick trip through passport control.  My driver took me all the way to the luggage carousel and even grabbed my bag.  Tracy was waiting for me it was then a short walk to the car , hit the road and head home.....Thanks Tracy you are a life saver x    This is what should have happened on the outbound flight but obviously the chap I asked for assistance  took one look at me  and probably thought I was faking it.  

So was the trip to Mojacar worth it ???? Probably not but then again I would have been thinking I should have gone.  From now on there will be no more trips outside the UK until im feeling like a normal person again and be able to do normal things, which may or may not ever happen again. Hopefully I will be able to do some trips in the UK and see how we go, but Im not jumping into anything.

Its nice o be home, the house is warm and snug and I'm back in my safety zone.

Since being back I have helped Russell fix the fence to make make it doggie escape proof, it blew down a couple of months ago and is the neighbours responsibility but he doesn't seem t be in any hurry to fix it. 

I managed about five minutes before I had to retire exhausted.

I also went up the stables with Kimberley and Russell as the horse float had a puncture, for this one I sat in the car and watched, it was too cold to get involved.

This Thursday Im  off to London to see the lung oncologist, Kimberley is coming with me and we are going by train rather than driving. 

I have quite a few questions for her as in...

What is the white gunk that I'm puking up?

Why am I so weary and still cant walk far, do I need another blood transfusion?  

How do I get my appetite back?

Am I ever going to lead any sort of normal life again or is this it?

Do I need to go on anti- depressants to give me a bit of help, she did suggest it once before but I said no, I'm not depressed!!  I dont feel anyway suicidal but would be quite happy to go to bed at night and not wake up in the morning.  What I struggle with is trying to see a way ahead, I cant imagine going to a nice restaurant again or enjoying a pint of Doombar, I have lost enthusiasm for everything pertaining  to a normal life.   One good thing to come out of the Mojacar trip was talking to someone who had cancer a a few years ago and like me reacted badly to the chemo. 
They told me that they went through a year of hell before recovering and now leading a very good life albeit some setbacks every now and again.

Perhaps I need to eat a concrete sandwich and harden up!

Once again thank you to the winter narrow boaters in Mojacar  who helped me immensely whilst I was there XX.

Wednesday, March 14, 2018

Back In Mojacar !!

  Well I made it back to Mojacar, when I left last year I thought that was it, I would never set foot in this little bit of Paradise again...

Last week I started to feel just a little bit better, I was off all the drugs and I was finally getting my taste buds back, not completely but just enough for food to start to taste of something rather than soggy cardboard.

My next appointment with the oncologist wasn't until the 29th of March so I rang here and asked what she thought of the idea of me going to Spain for a few days, I was concerned with two things...the first was would the plate pop out the side of my head, when they pressurize and de-pressurize the plane causing brain matter to explode all over the poor bugger sitting next to me!  My other concern was that would my blood stay good as I didn't want to get trapped in Spain needing a blood transfusion! She said as long as I felt well, go for it but dont stay away too long as they wanted  to get moving on the next stage of my treatment whatever that may be!

The next day I booked a one way flight on Easy Jet  to Almeria, I didn't want a return as I didn't know how I was going to feel and how long I would stay for. As soon as I booked I started to panic, thinking am I doing the right thing here, I was actually sweating booking the flight!  I was due to fly out on Monday the 12th of March, so I thought if I felt rough over the weekend I would just cancel it and lose the money.  My main problem was still nausea and general tiredness, but not enough to cancel the flight.  I had booked a train from Milton Keynes to Gatwick via Clapham Junction as I didn't want to go on the underground dragging a suitcase and feeling weak.  Sunday I got a message saying the train had been cancelled due to strike action.

Plan B... Get a train from Bedford which goes direct to Gatwick !!

Monday morning, plan B swung into action, I was up at 9.00am and felt bloody awful, a Taxi was picking me up at 11.00 to take me to Bedford t catch the 11. 55am train to Gatwick, the taxi part went fine but when I got to the station the train had been cancelled!!  Plan B was looking a bit shaky!

There was another train a few minutes later so after buying some nibbles and a very healthy mango, apple and banana I jumped on the train.  I was still feeling nauseous so thought I would have a swig of my healthy drink...fck me it was rank, it was so off it absolutely  stunk,  thankfully I only took one swig, it was foul! Luckily there were no other passengers in the carriage as I was sure I was going to puke. I managed to nibble on my biscuits which made me feel slightly better. 

I soon realised that I was on the slowest train in the UK and it was going to take over two hours to do a journey that was about 45 mins by car. I sat back and thought bugger it there is nothing I could do about it, it must have stopped at 20 stations before finally arriving at Gatwick. It also stopped at the South terminal but Easyjet fly out of the North terminal. I was knackered by the time I arrived at the check in and was also very late for the flight.  When I booked the flight I had asked for assistance because I cant walk far...the chap did lift the case on the conveyor as at 18 kilos I couldn't lift it. After he gave me the luggage tag I asked about the assistance to get to the gate he said just go up the escalators!! Basically piss off and walk you lazy git. 

The gate was 104 and was the furthest possible gate from check in, I still dont know how I made it, zig zagging through the bloody duty free , the stench of perfume was making me worse, I was going to puke at any moment! I made it to the gate with 5 mins to spare, I was desperate, I spotted a couple of boater friends who were on the same  flight, they were my saviours Linda went to get help and Richard gave me a bottle of water, Linda  also emptied out her plastic shopping bag so I could puke in it !!  Luckily the water made me feel better which was good as the bag was full of holes!

A Easyjet hostess arrived and took us straight to the plane which was wonderful and also apologised that I didn't get any assistance earlier.  The actual flight was good and we arrived at Almeria 25 mins ahead of schedule.

A couple of boater friends Andy and Roly met me at the airport which was fantastic, 45 minutes later we arrived at my villa, Sue and Bev (Andy and Rolys other halves) were in the villa, they had tea and biscuits on the go and had cleaned up the place a treat , the heating was on the bed sheets lovely  clean and crisp, They had also stocked  up the fridge and kitchen with food and beer!!  They are the most wonderful of friends.  The boating community is just fantastic!

I went to bed quite early absolutely shattered!

In the morning I awoke to this..... Everything from the day before was worth it! 
Its great to be back here and so much better than any drug I have had over the last few months.

I have caught up with all the boaters that are here at the moment which has been fantastic and I have only been back for two days, I am still not drinking but am starting t taste food again which is fantastic, its still not brilliant but is so  much better than a few weeks ago. 

The Mojacar canal cruising club .. MCCC

 I also caught up with my best friend in Mojacar, Eva, it was so lovely to see her smiling face again.

At the bar chatting to Eva drinking my favourite tipple.... A cup of tea !!

I also picked up the Jag, its been in the garage for the last couple of weeks having a brake problem sorted out plus having a service and getting a new ITV which is the equivalent to the English MOT.

It needed a new servo which had to be a Jaguar genuine part and cost 800 euros but the total  bill was 1245 euros which included the service and ITV so I thought that was pretty good, the servo alone in the UK was over a £1000 !

She drives like new again so Im happy.

I have felt really good today so Im hoping that it will continue that way, Im still not sure how long I will stay here, hopefully a couple of weeks all going well. As I mentioned earlier my next appointment with the oncologist is the 29th March so I have to be back before then.

I never thought I would say it but life is good again !!

Tuesday, February 27, 2018

Staying Alive Part 2

I had to go to Charing Cross Hospital last Thursday for a scan, I felt like death, and was not looking forward to the drive especially as we had to leave early to get there for 10.00.

My sister Lynne  drove and it was horrendous with crashes and breakdowns on the M25 and M4, We finally made it to the hospital at 11.00. We took the wheel chair as I couldn't walk at all, poor sis was buggered pushing me from the car park to the hospital.

In the lift I met the main oncology nurse who has been seeing me, she said as soon as you have had your scan, pop in and see me.

Because we were so late and they had some emergencies I had to wait for a couple of hours before I had the scan.

We popped into the oncology ward to see the nurse, she said right into bed, lets get you checked over, apparently I looked like death, I certainly felt it. They took my bloods etc and straight away they told me you are being admitted and going nowhere.

By mid afternoon I was back in a room on the 15th floor.

Apparently the chemo had shot my blood readings to crap and I was pretty damn ill. They gave me blood and all sorts of other drugs that I cant remember as I was so out of it.

All I remember next was waking Thursday night screaming the whole hospital down in the most excruciating pain I have ever felt in my life! The pain was in my lower back and pain relief wasn't working, morphine didn't put a dent in it, I couldn't stop screaming and swearing. Three doctors checked me out but couldn't find anything wrong and kept thinking thing that I had fallen and hurt my back or it was a previous back injury.

All of a sudden it was about 11.00am Friday morning and I awoke pain free. They had sedated me during the night, probably so the rest of the hospital could sleep!

Apparently I had a bad reaction to a GCSF injection which is supposed to stimulate bone marrow, once again most people dont have a problem with it. 

Long story very short, I stayed in hospital for five days, had 6 pints of lovely new blood plus lots of calcium by drip and as always other drugs that I just cant remember , I just have to trust them.

What a difference having the blood made, I was no longer breathless and could now stand and walk again.

I had another two scans whilst there, and there was some good news, even thought I have only had two doses of chemo the tumours had all shrunk. Plus the brain is looking good and recovering very well after having the tumour removed.

But because the chemo had made me so ill and nearly bloody killed me all treatment is going to stop for a while.

Im now back in Milton Keynes and  looking forward to hopefully trying to live a life again. I'm under no illusion I'm still very weak and its not going to be easy.

Other news.....

There has been absolutely no interest in my flat in Australia, I thought it would sell very quickly, but nope, Im not in a hurry so will wait and see, I can drop the price, but the last time we did that was when we sold our Oz house, 2 months later the prices shot up!  I pulled out of buying the flat in the Blisworth Mill a couple of weeks ago, it was a fantastic place but feeling so ill I just couldn't handle the stress of buying a place let alone moving in on my own, it just wasn't going to work.

Saturday, February 17, 2018

Im Still Alive!

But as the Aussies would say I have been as crook as Rookwood ( Which is a famous Sydney Cemetery)

The chemo session absolutely smashed me, I have never felt so ill in my life and that includes life threatening man flu!! 

I was bed ridden for over a week and basically would have been so happy to not wake in the morning.

My blood pressure dropped so low that I couldn't stand for longer than a few seconds and did collapse one night whist going to the bathroom.

They have altered all my drugs again, and I have stopped taking my blood pressure tablets.

I have felt better the last couple of days which is good, my biggest problem at the moment is that I literally cannot walk at all !!  I am getting a wheelchair today so I can at least get out of the house.

Im off to London on Thursday for a full scan which will hopefully show what is going on.

I know that this cancer will kill me but i was thinking it would be more like Elaines where we had some good breaks between chemo where we lived a normal life. At the moment normal life to me is a long gone memory, Im hoping it will come back but hey ho if it doesn't so be it.

I will try and update the blog more often, but as you can imagine when you feel like absolute death it isn't a priority .  I haven't replied to loads of emails. private messages, im really sorry and it probably sounds quite pathetic to say it was just too hard!! 

Paul XX