Sunday, August 12, 2018

A Little Bit of Good News And A big Bit Of Bad News

  The good news is I have finished my 13 sessions of radio therapy and two sessions of stereotactic knife surgery on my remaining brain tumours.

Basically it was all pain free apart from having my face squashed in by the mask when undergoing the brain tumour ops.

I made it as easy as possible by renting an apartment right next to the hospital for two and a half weeks, as I didn't fancy travelling to the hospital everyday, I dont think I could of done it

It did go a little pear shape  after the first week, on the last day of treatment they gave me a blood test, it came back bad my kidneys were failing, I was admitted to hospital for the weekend, they put it down to the extreme heat in London causing dehydration plus after effects from chemo.

After that my sister Jackie stayed with me in the apartment for a few days followed by my niece Hayley. They wanted to make sure that I was eating and drinking properly.

They both did a splendid job!


Niece Hayley and sister Jackie

Niece Hayley and moi
I even get to keep the mask!!


So far so good the side effects have been nowhere near as bad as the chemo side effects, I have had nausea and extreme fatigue and tiredness but they are getting better. They should wear off even more in a couple of weeks. I do have to go to a renal clinic next Tuesday to check out my kidneys.

Im feeling pretty good, nowhere near 100% but a definite improvement. 

I have a wedding to go to in  Cyprus early September, Im now a lot more confident that I will make it.

The Bad News 

My sister in law, Elaine's lovely sister Julie passed away last week

She was such a lovely lady lady just like my Elaine. She had been battling against bastard cancer for nearly seven years .

A few pics.......







A very sad loss  RIP Julie  XX

Friday, July 13, 2018

A Very Long Time Between Posts!

I thought I  had better get my act together and do a quick post. The last one was May 30th!!

Basically I am quite well and am not missing the chemo one iota. 

I did go to London to have a meeting with my oncologist, after a long chat I agreed to try radiation therapy which will mean going to London everyday for a month whilst they zap the tumours on my lungs. They also want to zap the two remaining brain tumours plus clean up whats left of the big tumour that was removed last Xmas. 

I went to London a couple of days ago to have the mask made up plus have a MRI and a CT scan of my brain, this is to ensure that when they do use the stereo tactic knife they will only remove the tumour and not any good brain tissue.

Having the mask made up was pretty awful, I hate wearing a full face crash helmet because it makes me feel claustrophobic, so having this thing molded to my face wasn't good, all I could think of at the time was those brave Thai lads being dragged through the cave underwater, if they can cope with that I can do this. When it was finished I wore it through the CT scanner, Christ it was tight


So that is it on the medical front, I am waiting for times and dates for the radiation/stereo-tactic knife surgery to commence ?

So with no chemo for six weeks I must be out there having a ball and enjoying life right ?????

Wrong.... I have been overcome with extreme tiredness and fatigue like you wouldn't believe and Im sure a lot of people just think Im a lazy git! 

I have put a link to it here, it saves me having to type it out because even doing the blog tires me out.

I have been getting out and about, we went away for three days in the caravan which was lovely but I feel guilty as I cant set up the van etc because Im just too tired and weak to do anything.

I had a lovely couple of days up at Stone to celebrate Rolys birthday, it was great to catch up with the boaty friends who we met at Aston Marina back in 2012, we have all become lifelong friends, they are just the best!

We had a lovely dinner on the Thursday night in the flash marina restaurant...thanks Roly


Friday afternoon we went for a mini cruise, it was lovely to take the tiller again after a few years off it.


Once again the tiredness kicked in and I had to retire down below for a sleep, I think I lasted about 30 mins on the tiller!

       
So I dont have sickness or nausea anymore, my tastebuds have come back a lot but still not 100%

What I now have is extreme fatigue that is just so awful, mainly because there is so much I want to do, I would love to go on a sailing holiday, I would love to explore  the rest of Europe that Elaine and I never made it to.  There are places in the UK that I would love to see, the money isnt a problem....I have sold everything, but when all you want to do is sleep there really isn't any point.

I really dont know whether the fatigue will go or whether this is my new living with cancer life and I had better get used to it. 

Well thats about it for now, even though I intended to write a really long post the tiredness is making it a bit too hard.

I will try and write a bit more often....promise xx




 







Wednesday, May 30, 2018

Fckd off !!

 After having a good meeting with the oncologist last Friday and having only slight side effects I went ahead with chemo.

It was only one drug what could possibly go wrong.......

I was so confident that I was going to breeze through it I booked a flight to Almeria,  booked a nice hotel for the night before as it was an early flight.  I also paid for a weeks airport parking..

Things started turning to shit after a couple of days, the dreaded sore throat had returned, I started gargling and taking all the medications to try and hold it at bay. It has worked to a degree and is nowhere near as bad as last time when I ended up in hospital for eight days.

But, and its a big but, I can hardly eat because its so painful and my mouth feels like the bottom of a birdcage, its absolutely foul. I am also extremely tired and have spent two days in bed.

So what is the point of going to Mojacar where the main part of the break would be eating and drinking, there is no point whatsoever plus the thought of maybe getting really ill and hospitalized in Spain doesn't bear worth thinking about.

I have got a full refund on the hotel and car parking but of course flying with Ryanair means the airfare part is flushed down the toilet.

I am so pissed off because i really thought that this maintenance drug was going to be the answer for me to lead a more normal life.  Reality is Im not going through this shit every three weeks.

Tomorrow I will ring the hospital to discuss stopping all treatment, there is only so much one can take and Im at the end.

xx





Saturday, May 26, 2018

Living With Cancer.....

Yesterday was the big day when I received my scan results, they wanted me at Charing Cross hospital as early as possible so I had to get up at the ungodly hour of 07.00!!

Brother Russ came with me as to be honest I wasn't expecting any good news so it is good to have someone with you to take in all the info.

We caught the train and tube which is by far the best way to get there it takes about one hour 15 mins from my door to the hospital.

First I went to the oncology unit so they could take some blood, reason being if the news was good I was going to have another chemo session.

We then went to see Danii the consultant oncologist, she is a lovely lady, I have always told her to be up front with me and that I wanted quality of life over quantity. She positively bounced into the room and said the news was all good.... the tumours on the lungs had shrunk considerably, the ones on the liver had also virtually gone and the ones on the spine hadn't changed.  It wasn't the news I was expecting, but it did put a big smile on my face.

The upshot is nothing really has changed, I have stage 4 lung cancer that is incurable, so the bugger will get me one day.  I asked about my longevity which was 6-12 months and that was 3 months ago, basically she cant answer it, I also asked her about going into remission which she said in my case wasn't going to happen.   

Her answer was I am Living with cancer!!   So there is no end date as such.  I will keep on having chemo every 3 weeks on a maintenance drug called permatrexed. I will also be on the lovely term active surveillance which basically means seeing how I go with every day life etc.

I will keep on this regime until it stops working,  I will be scanned after every 3 sessions.  the side effects should and I really hope should be minimal. 

After our meeting Russ went off to the science museum whilst I went off to have my chemo. The actual chemo drug only took 15 minutes to drip in but there are lots of drugs infused before that to stop nausea and strengthen my bones etc 

We left the hospital at 15.30 and had an uneventful trip home, if we had drove we would have still been sat in bank holiday traffic.

I am happy with this its the first positive news I have had since this crap started back last October.

Im so happy that I have been looking at flights to Mojacar in the next few days !!

Another bit of good news is that my flat sold in Sydney link here  We only bought it as an investment when we sold the house as we wanted to keep a foothold in the Sydney market. I have never seen the place let alone live in it.  We bought it in 2013 and it rented really well and we also made a good profit on the sale.  One of the reasons I wanted to sell it is that I wanted to tidy up all my affairs around the place so that when I do shuffle off this mortal coil it wouldn't be too hard on the relos to sort out my affairs, so getting rid of seemed to me to be a no brainer.

So that is the last link to Australia gone, I have no regrets as we had a brilliant 32 years there and without living there I wouldn't have been able to retire early and travel around the UK and Europe etc.

Having said that, I would have never got the support in Oz like I have had here, we had plenty of friends in Oz but I wouldn't and couldn't  expect friends to help me and Elaine out like family does.    Plus even though we were insured it would have cost an absolute fortune paying the gaps in the medical insurance. Being ill is one thing, being ill and skint is a whole new ball game.

So onward and upwards, Mojacar here we come..... You are now stuck with me a bit longer !!!



 


Tuesday, May 22, 2018

My New Nest....

I have been living with my brother Russell  and sister in law Tracy for 6 months now, they have been absolute life savers and I often think what I would have done if they had not had welcomed me into their abode plus basically looked after me for the last six months, there really are no alternatives especially with 2 dogs in tow. Im not too bad at the moment and can look after myself but for most of the time I have been incapable of doing so.

I have been living in the third bedroom, and like most English houses the third bedroom tends to be on the small side.  Niece Kimberley moved into her own flat with her boyfriend Chris a couple of months ago, so it was decided I would move into her old bedroom which was a much bigger double room.   The old room was to be polite in need of a bit of TLC, I didn't expect Russ or Tracy to do it even though they wanted to, I physically cant do it so I advertised for a handy man to do it. I picked a winner straight away, he turned up on time to give me a quote and straight away I could tell that this guy was a good un.  He started on a Tuesday morning and was finished early Friday morning. The room was re painted, new wall paper on one wall a new light fitted and new carpet and underlay.  I chose the new furniture and bed and they were delivered on Friday as promised.  Tracy chose the light fitting, the wallpaper and curtains plus the bedding, there was no chance of me getting that right.

The room looks and is superb and I am loving it. 




The three doggies all love it too although Bombo is the only one who can jump up on the bed.


Sunday was another cracking day so we decided to go and watch Kimberley show jumping. We left a bit late and got stuck behind a tractor for 10 minutes plus took a wrong turn as we got close to our destination. The result was we just about spotted her doing her round, she clipped a post anyway so jumping wise it was all over. 


It was a huge show with loads of stalls selling horsey and other stuff, one of the stalls sold hats, I have been after a wax hat for ages to match my waxed Belstaff jacket.  The first one I tried on the sales lady said was very popular with the ladies...whoops. The second one was just perfect and even the colour matched.  They also sold good quality straw hats so I bought one of them, I need to protect my head from the English sun plus it is the ultimate accessory to go on the rear parcel shelf of the Jag.


Monday was my big scan day at Charing Cross hospital plus I had an appointment to see the neurosurgeon in the evening as my head was starting to cave in !!

First up was an MRI scan with dye. They had to fit a canula to inject the dye, it took a lot longer than normal  as my veins are a bit buggered after having so many needles and was actually a bit painful.

I'm used to the MRI scanners now but still find it such a primitive machine and cannot believe that they cant make one that is just a bit quieter and doesn't vibrate so much.   I can see why some people have to be sedated before having one. I actually sleep when I'm in the thing which is about 30 mins.  Straight after I had a CT scan but they couldn't get the dye through the canula.  I had to have another canula fitted, after four attempts and two different nurses they got one in, my arms were like a bloody war zone.  

Next up was a quick visit to the oncology wing where they took my blood in anticipation of chemo next Friday.   Next Friday morning at 10.00 am I have a meting with my oncologist who will give me the scan results and will decide whether we go ahead with chemo that day.

I really dont know what the results are going to be and I am certainly not getting my hopes up, I know I cant be cured but am hoping to get a bit more than the  9 months to a year scenario!!  I have noticed a few more little pains starting under my ribs and also a bit of a back ache so whether the little bastard is starting to spread who knows. Apart from that I have been feeling pretty good. I am eating much better, the sore throat has finally gone. My biggest problem at the moment is extreme tiredness which is OK cos I just sleep, and in my lovely new bed its very very easy to sleep. 

I headed back to Milton Keynes via the tube and train and was home by 17.00, I then jumped into the car and drove to Harpenden to meet the Neurosurgeon who removed my brain tumour back in December. As I mentioned earlier my head was starting to cave in around the site where the tumour was removed.

He is a lovely man and quickly assured me that all was OK and it was just the skull and plate  adjusting , as the tumour had gone and the brain was no longer swollen  it was just filling the gaps so to speak. It was also made worse by the fact that post op I had the bad infection that made a bit of a mess of my skull so that also contributed to the dent!  All in all he thought I looked great and as he was in the loop with my chemo and treatment etc thought I was doing very well considering all the bloody awful side effect I have been having.

Today was a day of rest where I did very little apart from walking the dogs around the lake with Kimberley and chilin in general. 











Tuesday, May 15, 2018

A Good Chemo and Amazing Meetings !!!


If there ever can be such a thing I have had a good chemo session. Im now into my 11th day since my last session and so far have had no major side effects. This is the first time it has happened since all this crap started at XMAS 

I still feel tired and my taste buds are well and truly rooted, but all in all I'm pretty good. The oral thrush is just about gone but my throat is still sore making it hard to eat, typically a bacon sandwich takes about an hour!  But it is getting better and I'm sure in a few weeks it will be back to normal.

I think im up for a scan next then its the big decision on whether they give me more treatment or just leave it alone and watch to see what happens.  Im hoping for the later and have a nice break from any treatment.

Pic below is me being pumped full of poison, I arrived at Charing Cross at 10,00 and got released at 18.00 ....its a long day!




I was joined most of the afternoon by Pat who is  mine and Elaines friend and old neighbour from Sydney.  

She and her hubby Martin have been on a mega trip to South America and Pat was on her way back to Oz via the the UK.  It fitted in with her time table so we had a good long catch up in the chemo ward.

They were our neighbors for yeas plus Elaine and Pat worked together at Roche and I played for the same football club as Martin.  



Next up was going to watch niece Kimberley showjumping.  It was a glorious day made even better by Kimberley winning both of her heights, she is a very good show jumper.




It was a lovely day for driving the Jag too.


Then it was time to buy a caravan, we have been looking for a while and a private one came up in Milton Keynes.  Its an immaculate van and although second hand is like new.


The plan is that I can take it away to various parts of the UK this summer and worst cases scenario if I was taken ill I could go home and  brother Russell would pick up the van.

Russell and Tracy will also use it when they want.

Being a private buy it came with lots of extras all  including an inflatable awning and basically everything you need to take off touring.








Talking of the Jag I noticed that although the tyres had plenty of trad on them the sidewalls looked perished, the previous owner only put a few ks on the car and it sat for a long time, so bugger the expense I had four brand new tyres fitted. I'm not taking any chances of getting a blowout etc especially towing a caravan!

A good friend from Manchester sent me two tickets to see West Ham V Man Utd, as my nephew Liam is a mental West Ham fan it only seemed right to take him along.

I booked a nice hotel near the ground as it was an evening kick off and I didn't fancy getting a late night tube and train back to Milton Keynes.

On the way to the hotel I literally bumped and I mean bumped into Sandra off of NB AreandAre at Euston station.. we first met Sandra and Barry back in 2010 in Sydney and they were a big inspiration  for  us to pack up work and start a new relaxing life on a narrowboat.  This was when they were on their boat NB Northern Pride and were going back and forwards from the boat and to NZ. They still live and trade off of a narrowboat, we last met them at a boat trade rally in Stone probably about five years ago.  What are the chances eh ??



We arrived in the hotel on Wednesday afternoon about 13,00 so after checking in we grabbed a cab and went to a couple of classic old London pubs on the Thames.

One of which was Sir Ian Mckellens pub The Grapes which is located at Limehouse 


Gandalfs staff sits behind the bar on display.




The game itself was pretty crap but we had a fun time.


Summer continues to be nice and warm, so me and Kimberley chilled out on the hammock for a while.


I also took  Bombo to the Three locks pub and used him as a pillow whilst I had a sleep by one of the locks!


Last weekend we took the caravan up to a local site so we could check that everything worked as it should.

Its a really lovely van and indeed everything did work as it should.

Tracy did an excellent job in buying bedding that matched the decor of the van, I slept like a log in my new bed.

We even put up the awning, such an easy job, 20 mins and its done.


The weather was awful on Saturday, but Sunday and Monday were superb, this was my view from the bedroom window, just as I like it....no people!


Whilst walking around the site I bumped into another couple of old friends....Joe and Lesley who were the original owners of our boat Caxton which we bought off of them back in 2012 !!  

They are now out of narrowboating and are into motor-homing and are making the most of it with some big trips around the UK and mainland Europe, yet another what the moment !!

Lesley will kill me for putting the photo up as she had just got out of the shower...still looks lovely to me xx





Finally the sad bit....Yesterday would have been our 11th wedding anniversary,  I still miss her like you wont believe and often think to myself how different my present life of  living with this fkin disease would be, because I would be her priority 24/7 because that's how she was.

So I will finish this post with a few photos from that wonderful day in Las Vegas 11 years ago.





Happy Anniversary to Me xx



Wednesday, May 2, 2018

Hospital Again And The End Of An Era

Its been an awful long time since I did a post and an awful lot has happened, and once again some of it has been truly awful !!

I wont wobble on for too long and go into great detail so this is the abridged version !

Russell and Tracy had took off on their mega hols leaving Kimberley to look after her favourite uncle.

I picked up the Jag  on Tuesday and got it home.

Wednesday I started to get a sore throat, problem was this was the sore throat from hell, It was like I had swallowed a hundred razor blades, I went to the GP but managed to see a nurse who said I have oral Thrush !  I thought thrush was some girlie problem with their downstairs area!  Have some Nystatin that will sort it out.

Did it hell, I was in total agony, water was like acid, ice cream burnt me, I couldn't eat a thing I couldn't drink  I was in total agony again and went to bed to try and forget about it all and just hopefully die. 

On the weekend I started being sick and realised this is pretty serious,  Monday morning sis Jackie, niece Hayley and Kimberly all came to the house and rang Charing Cross hospital....Bring him in straight away... like now !!

Kimberley drove whilst I sat in the passenger seat puking into the sick buckets!

Straight up the the 15th floor, welcome back Paul your room is ready....within the hour they had stopped the puking and had me on a drip,  I was suffering from malnutrition, dehydration and my kidneys were on the verge of packing up.

All this from a bloody sore throat that once again was a side effect from the bloody chemo!

Cutting it short I was on a virtual constant drip had two blood transfusions and slowly started to recover.

The weather was lovely and I actually could see the Thames from my room. 

I was due some visitors from Spain, Jay and Eva were coming over for a few days and wanted to pop in and see me.  They were coming on a Saturday but I felt quite good  so decided to walk down to the Thames embankment.  Next thing  Jay rang they are in my room....they soon came down to the Thames and we had a good catch up.


They walked me back to the hospital where we bade farewell.

Jay took a great shot of me and my best friend Eva, the photo sums up our special bond we have even though there is a 41 year age gap.  She is such a special person in my life xx



After eight days in hospital I was released....

Thankfully they had fixed me up yet again.

It took me a fair while to recover at home especially with he sore throat but gradually we got there.

I felt well enough to drive up to Braunston to-catch up with Sue and Andy who have returned from Spain and are back into cruising mode. 

Elaine's dad died a couple of weeks ago and Tuesday was his funeral so knowing Elaine would have wanted me to go so I got the train up on Monday.

It was a well attended funeral, as Burt was a born and bred Macclesfield lad so a lot of locals were there.

The wake was at Burts local pub and was well turned out with lots of people, I managed to stay all day and then went out again at night, it was a long day.

I popped around for the last look of the house that Elaine had lived in for a lot of years and one that I had visited on numerous times.


I took a pic of Elaine's old bedroom door, still with her name and doll on it. 

It was sad to walk out of it thinking I will never step foot inside it again.

Im now back in Milton Keynes and am going to London Friday for another chemo session. I am so hoping that I have no effects this time !!!  It would be a nice first.

Other News.....

The Spanish Jaguar sold very quickly.

My flat in Sydney sold for a lot more than I wanted which was a bit special.

Perhaps I'm just getting a little bit of good luck which has been sadly lacking for a long time.