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 

Tuesday, January 23, 2018

Escape Imminent

 Its now Tuesday 23rd January, so I have now been here 11 days, which doesn't sound long,  but it feels like an eternity.

The leak from my head has 100% stopped which is fantastic and there will be no more opening up of my Brain. There are still 2 more small tumours in there but they will be removed one day day by non invasive means, but that's not a given either, it all depends on how well the primary lung cancer responds to treatment.

I have been on anti biotic drips since I arrived here and they have done the job on getting the bacterial levels correct.

Its been a massive change for me that's for sure as up to this point I had never had a need to go to hospital.

The bit I hate more than anything is taking of blood at 06.00 every day, then its drip, sleep, eat, drip and so on until the last drip stops in the early hours of the morning. None of it is painful, but I'm in a constant daze not knowing  where I am or what time of day etc. Im also still having steroids, which I hate!! The worst side effects to me is a massive loss of taste, they feed me the most gorgeous looking food, but my taste buds are well and truly stuffed.

All in all minor stuff.

I have been getting loads of visitors which has been great.

Yesterday was a big day as I went outside for a walk... the hardest part was putting on my shoes as my feet had swollen so much, but I managed to get them on and went for a walk, with Cathy and Martin an couple of boaters who had come up from Southend to see me before they join the other boaters in Mojacar next week.  We  didn't go to far before returning to the safety of my little suite!

I am being discharged tomorrow and will be on an oral anti- biotic for about a month.

The next chemo is due on 30th January, that will not happen now, which I'm very happy about. They have mentioned radio therapy but nothing set in stone as yet. 

What I want  is to go home, see the family and doggies and try to start living some sort of normal life again. Its going to take a while to get into it, getting dressed is a struggle, so its going to take awhile methinks.

Hopefully I will get a few weeks to build up my strength then we will will tackle the primary lung cancer!!

Enjoy life people. its very very precious !!!


Wednesday, January 17, 2018

Life On A Drip !!!

Well things have gone a bit pear shaped since the last post....

And as Im typing this whilst under various anti-biotics and drugs in my system there will be the numerous errors, plus medical ones which Im sure some people pick up, but hopefully you will get the general gist of where Im up to......

I was handling the chemo ok and was on track to head on down to Spain with brother Russell and nephew Liam via the Portsmouth to Bilbao ferry.

But....last Friday the 12th whilst out with my sister sorting out headstones for ME my late mum and dad, my head sprung a leak, and started oozing out liquid and traces of blood, it was coming from the top of the scar, from the tumour removal, it had been leaking a little anyway and I thought it was just taking a while to heal properly, but this was like a hole!!

We went back to my base in Milton Keynes and made a decision on what to do....

It was nearly 18.00 and everyone was hungry, sorted lets get an Indian takeaway... It was absolutely lovely!!

Unfortunately my head was leaking a lot worse, so sensible head on and ring Charing Cross Hospital!!!

 Answer, get to Milton Keynes A and E ...... Now!!

This was 19.00 on a Friday night, so we were expecting to be sat around for hours waiting to be seen by the poor over worked NHS staff, the reality was in about ten minutes, Im having blood taken, scans are arranged of my brain and its all moving very fast.

  Milton Keynes hospital doesn't have a neuro  section, the closest one is Oxford, but as I had the original op at Charing Cross it made sense to go there,  this was going to be the only holdup as all the Ambulances in the UK are being used to transport people around who are dropping like flies because of the bloody antipodean fkin flu!

So blues and twos were fitted to Kimberley's car and off we went to Charing Cross hospital with all the notes from Milton Keynes hospital, we arrived at Charing Cross A and E at about 01.00am on Saturday morning, once again straight in. Many thanks to Kim and Russ for taking me they got back to MK at about 03.00 and then both had work the next day!

It was pretty packed in there , but the was only one neuro doctor on so he came to look at me very quickly, he asked me to cough,which I did and covered him with a fountain of CSF (Cerobrospinal fluid)   which was now literally squirting out of my head!! He said no tests required this is serious leak and stitched it straight away and I was whisked off to a ward!

The result of all this is that I am now back in my little private room on the 15h floor of Charing Cross hospital whilst they pump me full of antibiotics.  I have an infection which resulted in the leak, its now only leaking a very little, but there can be no leak whatsoever, so it must be resolved. The Prof who did the original brain tumour removal has visited everyday including Sunday!! There is a chance that he will have to operate again, but he is very reluctant to  as at the moment the brain is still 100% protected and fine but if he opens again there are some serious risks involved, dying can be fatal!

Im all good at the moment, its a lovely room with views over London, BUPA are covering everything, I'm having lots of visitors and I'm in a top Neurological hospital.

My next chemo probably wont happen as this must be sorted first.

So as the title says I am on a drip not constantly, but sometimes it feels like it, but I do get breaks and go walk about etc.

Other Stuff....

Brother Russell and Nephew Liam have delivered the Shaguar back to Mojacar.

Thankfully I didn't go as there is no doubt I would have died of meningitis on a Brittany ferry in the middle of the Bay of Biscay.

They had a rough two night crossing and were indeed the last ferry to sail as they are all now cancelled because of rough seas.  

Once off at Bilbao it was a straight 9 hour drive through rain fog and snow before hitting the sun as they got close to mojacar .

 They were in the Emerald Isle pub for Pizza and beers Tuesday evening, meeting up with Mojacar Cruising Canal Club people.

And what lovely people the MCCC are, they had been up the villa the day before, and cleaned the bed sheets, cleaned the villa, stocked the fridge all ready for my brother and nephews visit.. they were also assisted by a couple of other mojacar friends, I cant thank you guys enough x

Today Russ and Liam have cleaned and polished the Jag back to perfection they have explored a few coffee shops and had a swim in the sea!!!

They fly back to Luton on Sunday, so will have a lovely few days in the  winter sun.

I will get back down there myself, but at the moment probably a fair while away.

I can only hope, that this post made sense...... XXX

Wednesday, January 10, 2018

First Chemo Done !

My first chemo session was yesterday (Tuesday)

I had to be there, by 09.00 so I caught the early 07.30 train out of  MK, 

Brother Russ kindly gave me a lift to the station.

The train was pretty empty so it was a nice easy trip to Euston.

The tube to Hammer smith was packed, usually its deserted , but this was my first rush hour trip.

The usual 15 minute stroll to Charing Cross hospital, then the express lift to the 15th floor Thames view private suite it was job done.

I checked into the oncology  day suite, I was the only patient today !!

They are lovely nurses, and with just me to deal with there is loads of time to chat etc, everything is done slowly with bloods being taken, and  plenty of tea and coffee etc, its a quite surreal experience from the normal front line pace of nursing. 

There was a hold up getting started as my liver blood test was a bit out of kilter.

The oncologist had picked it up on a blood test from last week and rang me Friday night to tell me to stop taking the anti-seizure drug Kepra. I have been on this drug for nearly 2 months. Now the tumour has gone they reckon there is no chance I will have one. Interestingly a seizure is one of the first signs of a brain tumour, I never had one!

I wont go into all the details of the different drugs , as I dont want it to turn into a medical blog,and they are far too difficult to spell. I do know that two were the poisonous shit. One was a bone strengthener plus flushes, saline, anti emetics and anti biotics.

They started the drip at about 09.30 and it was all done by 18.30.

I was talking to a friend earlier in the day and she said you are going to be so bored, In all honesty I didn't get time to get bored.

I am incredibly positive about the whole scenario but  also know that I am not going to live to a ripe old age, so I have plans to make.

My treatment card reads palliative care.....Fck That!

Also they bring  around nice food for me to graze on !

My lovely niece Josie visited me so we spent a quality few hours chatting away. 

My plans at the moment are just clearing up Australia, as I will definitely will not be going back there to live but it is where I have a property, pension, and bank accounts.

The property is the main thing, its sorted now and will go on the real estate market in two weeks. Im pretty confident it will sell quickly.

I went a bit off track there which Im doing a lot because of the tumour removal!

Some people reckon I seem smarter!

Right........ Brother Russ had driven down from MK to pick me up from the hospital as I didn't know how I was going to be after the chemo , and I certainly didn't fancy the packed tube etc.

We had an easy drive back home.

I had a lovely dinner at night with no after effects from the chemo.

I had a great nights sleep which was wonderful.

I was up early this morning and have spent all day chillin, listening to music and inter dispersed with chatting on FB and lots of nodding off sleeping.

No sickness whatsoever which is very much like Elaine's first chemo sessions, she breezed through them until Boom!

So one out of the way.

Sunday I am chauffeured to Mojacar, my Nephew is coming on the trip as well.  Im so looking forward to getting down there to catch up with the boaters and mojacar friends.

Once again sorry about the mistakes, it takes me ages now to write up and I still know its wrong!

Friday, January 5, 2018

Meeting With Oncologist

Had a meeting today at Charing Cross hospital with Dr Danielle Power, specialist lung oncologist.

Tracy accompanied me to take down relevant notes, observations etc. Basically without going into lots of detail its the non-small cell cancer 'Adeno Carcinoma', which is a form of lung cancer where it has originated from. It is incurable but hopefully controllable with treatment, she showed us all the scans which showed a 3x4cm width and 5cm long tumour on the lung, and various legions on the spine, liver and pelvis area.  Primary treatment is Chemotherapy which is to commence on Tuesday 9th January and will continue with further sessions every 3 weeks. This gives me a good excuse to go catch some sun in Mojacar.  Brother Russ and I are heading back in the Shaguar on Sunday 14th Jan going via the Portsmouth to Bilbao ferry, all going to plan should see us back in Mojacar on Tuesday 16th evening.

 Russell will be doing all the driving as I am not allowed at the moment, Russell will spend a few days with me chauffeuring, cooking and cleaning for me and fly back to the UK on Sunday 21st. This gives me a few days break to catch up with friends in Mojacar before flying back to the UK for more chemo on Saturday 27th Jan.  In the words of the oncologist when asked about looking after myself she replied "Eat, drink and be merry!"

 I feel absolutely fantastic but they are now weaning me off the steroids as I have been on quite a high dosage for a long period of time. So from my perspective it's all good news and life carries on....

The doggies will be staying  in Milton Keynes which they love, plus it makes it so much easier for me knowing that they are being loved and looked after.

Nearly forgot.....

Yesterday I had an appointment with Professor Nandi the neurosurgeon who removed the stitches and showed me the post op brain scan, which showed a void where the tumour was and no swelling whatsoever.  As he promised he had completely removed all the cancerous tumour.  He was on crutches and told me had badly twisted his knee before he operated on my head and did most of the op propped up on one leg!! There are still two small brain tumours, which they will look at removing with a cyber knife at a later date depending on how the cancer reacts to chemo.

Im still having a few brain fade moments, but hey its only been just over two weeks since the surgery.