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.


Monday, January 1, 2018

Happy 2018

 Wishing you all a very Happy and prosperous 2018.

I dont intend going anywhere so I will carry on carrying on the blog as long as I can still  find  something to drivel on about.The brain is going to take a while to be fully functional again but its not too bad, I can see the errors,  but I know Im not correcting them all the time. The blog has never been edited well since Elaine died, she was a medical secretary and her command of English and grammar was superb. I was a motor mechanic ....say no more.

Just one  photo today, its the one Elaine led her life by.   She did indeed live by these daily Reiki  precepts and at her wish were read at her funeral.. Im trying to live by them apart from the work bit that is....that finished back in Feb 2012, but the meaning is still there.

Saturday, December 30, 2017

The Glimmer Arrives.

 Christmas is over and what a cracker it was, as I mentioned in an earlier post how I wish Elaine had been here to share it with us, it was the traditional Christmas that we had always fancy doing but never quite got round to it, Im sure she watching and was very happy to see me and especially her two doggies so looked after.  

I have felt absolutely  brilliant, the only small downside is that the steroids have given me such a massive appetite, and I am eating for Africa. Also and I dont know if its  the steroids, the anti seizure medication or the brain tumour removal but my taste buds are a bit out of kilter. Its not too bad and is getting better day by day. I bought some lovely French red wine for Christmas, and couldn't wait to try it,  basically I just didn't get anything out of it, never mind it will go well in the next spag bol.

I'm still struggling with time issues, time just seems to go so slow, which is quite nice. 

Iam having to think a lot more carefully when filling out forms and banking online etc, I am making mistakes. But one week ago I had pretty major brain surgery so Im not beating myself up about it. 

I was booking flights and a hotel for holiday a couple of days ago and it all went well until my sister in law checked it and said that I had booked the wrong hotel. I couldn't change it on line, so had to call BA direct the next day. I wrote down all the details of the correct hotel which did have a similar name and location. The girl was lovely and I spoke to her for ages and still managed to book the wrong hotel on the phone!! When I told her about the brain op she was just so lovely and made sure we got it all done and dusted with no problem. All sorted, no loss of deposit, no additional fees just good service. Kudos to BA.

I will go to Macclesfield by train next Wednesday to catch up with Elaine's dad and brother Trev, plus catch up with a couple of friends. I will just go on the virgin train its one hour 20 mins each way so it makes a nice easy day trip. 

Next Thursday I meet up with Prof Nandi the Neurosurgeon at Charing Cross hospital, it will be just a quick check and removal of stitches. I presume he will also talk about the other two small brain tumours and what they will or will not do with them. 

Friday is the big one as its back to Charing Cross to met up with the lung consultant oncologist who will hopefully give me the full rundown of the disease. I spoke to her yesterday, and that was the glimmer I had been looking for. She said there are loads more info they are still getting from the tumour that has been removed from my brain, but basically its not the super aggressive cell, so  I have longer than weeks!!

Sister in law Tracy will come with me as this is going to be an important meeting, I have already decided that I want quality and as much as possible treatment is going to be around me trying to enjoy life as much as possible.

I have also checked with Bupa, about any limits to treatment and costs, there are none, it will all be done on the private system. I feel incredibly privileged to be going private and a little bit lucky that about 20 years ago BUPA took over my Australian medical insurance, so including Spain I have been under the BUPA umbrella for 22 years. Oh there are two conditions  where they stop paying. one is that I dont pay the monthly fee, and the other is that I die. I reckon that I  will keep on paying the monthly fee!!

So at he moment life is very good, still no pain, I  haven't had one pain killer since coming out of hospital one week ago today.

I am going to catch up with more family and friends before next weeks hospital visits.

Yesterday my lovely niece and chauffeur/carer took me to the three locks pub for a very very long lunch with a mate who is off back to Mojacar next week. 

A one hour lunch went for three!

Once again massive thanks to my family who are looking after me in 5 star fashion, they dont realise what a difference it makes for me not to have to worry about anything, especially my precious doggies who have always been my biggest concern, they are both very very happy with their present house, they are unbelievably happy little boys

Big thanks to the boaters who are in Mojacar who check up on the villa and my stuff down there, I'm seriously hoping to get down there even for a few weeks sooner than later...I have plans!!

Lastly big thanks to the readers of this drivel that send me lovely messages etc, it is appreciated.