Mary here again

• On 30th January 2020 you lost your battle and I lost my soulmate. There are no words to describe how much I miss you and what a devastating effect this has had on our family.Your blog was written beautifully but now 4 years later I realise that the focus was on your medical treatments rather than the possibility of death or what would happen when you were gone. I now understand that this was too difficult for you to discuss and that your focus was on trying to live as long as possible. For me this has had awful consequences as we never got the chance to say goodbye even although we knew that you were terminal. The terminal diagnosis led to pain ,despair ,fear and  denial which I now know prevented these conversations from taking place. Your last year still haunts me and I wish that I had insisted on getting professional help from cancer services to try and process what was happening and to try and prepare for losing you. Grief has been overwhelming for me and every day is still a challenge without you. Someone asked me what I miss most about you and my reply was 'everything'.For anyone reading this faced with the same end of life journey I hope you can be strong enough to have the conversations that may help your loved ones prepare for adapting to a life without you by their side. Sending love to all of you xx

Hi all,

Marydoll here with the saddest of news.

On 30th January 2020 our beloved Grahame lost his fight.

Grahame would have wanted me to update his blog to let everyone know how things progressed since his last post. Unfortunately he could only manage to do a further 5 rounds of chemo before the side effects all became too much and the doctors advised that he stop. His PSA levels continued to rise and reached 798 after chemo #5.  Grahame had a further CT and bone scan in early January which showed extensive progression of his bone metastases and evidence of spread to his liver. His pain continued to increase, requiring additional medication at home which began with the support of his GP and the Hospice team. It became impossible to control his pain at home despite everyone's best efforts and it was at this point in time that Grahame finally asked for help with his pain.

Grahame was admitted to Ayrshire Hospice on Thursday 16 January with the belief that his pain could be stabilised within a 2-week period and he could return home. However, it became very apparent that his pain was extremely complex and it took a period of 10 days and numerous changes to his pain regime to get his first pain-free night. During this time, Grahame continued to be upbeat and smiley, always downplaying his pain to the fantastic medical team who were trying their hardest to make him more comfortable. Towards the end, Grahame required 24-hour syringe drivers to deliver continuous pain control, but still needed frequent top ups of additional morphine. On each occasion, he thanked the medical team for their help - always addressing them personally and full of smiles.

After the first week in the Hospice, his PSA went up to 1089 and then 1249 the week after. His Consultant gave him the news that there were absolutely no treatment options left, including the pre-trial drugs that Grahame was hoping to try. He took this news with strength and courage and was still very much hoping to get home, all the while saying (in typical Grahame style) that he felt like a 'fraud' and that other people needed the bed more.

Unfortunately Grahame deteriorated very quickly over the subsequent few days but was surrounded by all of his very loving family all of the way.

During Grahame's 2-week stay at the Hospice, all of us were treated with total dignity, respect and compassion. The care was truly exceptional. It was a true blessing for the family to be able to stay at the Hospice by Grahame's bedside. We were so lucky to have an adjoining lounge overlooking the beautiful gardens, as the staff quickly realised the size of the Garven family! We even managed a wee party night round his bed watching Rangers playing footie the night before he died.

To all the medical, nursing and voluntary staff at the fabulous Ayrshire Hospice - I shall be forever grateful. I know you loved his smile and allowed our family to be together during the most awful time.

I also have to say a massive thank you to his lovely Oncologist Dr Hilary Glen who gave him her valuable time and answered his numerous questions. She gave him hope as long as she could and was never put off by his wonderful inquisitive mind. He absolutely had to know every blood result, scan result and next treatment option!

My lovely hubby died with myself and his closest family showering him with kisses and cuddles 💙

The funeral will be held on Friday 14th February at 12 noon at Seamill Hydro Hotel, Seamill, Ayrshire, KA23 9ND.  There will be a collection for Ayrshire Hospice on the day.

Hi All,

Now that I have started chemo again, I thought I would give you a short update.

As I mentioned in my last blog entry, I was unsuitable for any ongoing clinical trials and as I have now had all the conventional ( and other ) treatments, a second round of chemotherapy was the only treatment option left on the table !

I started my Cabazitaxel chemo on the 23rd September 2019 at Ayr University Hospital.

I have now had 3 rounds of the chemo and to be totally honest, I am finding the side effects very challenging. I have never felt so fatigued in my life and at the moment, just want to sleep all the time ! I am also suffering from severe constipation ( less said about that the better )! The good news is that, with the help of the Ayrshire Hospice and my consultant Oncologist, we have managed to keep my pain under control, although it does feel that I am carrying a small child on my back most of the time !!

I am on a cocktail of painkillers, Morphine MST 40mg twice daily, Naproxen 500mg twice daily, Pregabalin 150mg twice daily, Amitriptyline 20mg and Lorazepam 2mg.  This is along with the usual steroids and vitamins etc.

The plan is to gradually reduce the painkillers if/when the chemo starts working.

Before the chemo started, my PSA was at 392 but has risen to 600 after 2 subsequent blood tests. Apparently  this is not unusual and has hopefully reached it's plateau and will start coming back down again after further treatments.

Anyway, enough of the doom and gloom !!

We have still managed to get a few holidays and parties squeezed into our busy schedule :>)

We had a lovely weeks holiday in Costa Adeje, been over to the caravan in Arran a few times, more recently a couple of weeks ago to prepare it for the winter shutdown.

We had a fantastic Haloween party fo the kids and a lovely private dining experience in the Seamill House hotel with all the family for wee Katie's 30th.

That's all for now folks !   Will post another update further down the chemo trail.

Again and as always, a huge thanks for all your love and support, Big G x

Hi amazing family, friends and followers,

I finished my last blog post waiting on comeback from London hospitals regarding participating in a PSMA Luticimide clinical trial.

The great news was that the University College London Hospital in Euston Road agreed to take me on, Nephrostomy pipework included.

I have had 4 'flying' visits to London since for consultations, scans and various tests etc.

Unfortunately my haemoglobin ( red blood cell ) count dropped below the threshold for the trial so I had to get a blood transfusion to bring my count back up. Everthing needs to be completed within 30 days of signing the trial consent form, so this transfusion put me back to the start of the process !

My last visit to London was to Guys hospital for a PSMA PET scan where Marydoll and myself were given a full conscierge service. BA flights to London, chaffeur waiting at airport to take us to Guys, overnight stay in hotel and same on way home.

Many thanks to Hakan our fantastic driver for giving us a guided tour of London on the way back to the airport :>).

Then the disappointing news ! I got a call from my trials consultant in London informing me that my cancer type wasn't compatible with the trial  ( PSMA Proteins, 80% plus of candidates are PSMA positive, but unfortunately not me ! ).

We were devastated,  to say the least,  as this was the only viable trial option available to me.

But where there is a will there is a way.

It has been a slog with a lot of pain, constant fatigue and lack of enery but I have been feeling a bit stronger over the last few weeks ( minus some days with the almost constant kidney / urine infections ! ) so have decided to go for a second round of chemo. They have also increased my pain relief and put me permanently onto steroids which seems to be helping a bit.

I will take the chemo one treatment at a time and keep going if I am able to tolerate it ok. 

I am also in discussions with the Beatson regarding participating in pre-trial drug testing and the posibility of more palliative radiotherapy treatments to help ease the ache in my spine. So a few things to keep me busy and motivated along the way.

On the sunnier side, we have been over to the caravan lots this summer and are planning a week in the sun somewhere before the chemo starts. We also had some great days with the grandkids over the school holidays. They certainly keep you going and take your mind off things for a while.

Wee Anabel started in P1 last week, seems no time at all   since she was crawling around the floor !

Some more pics in Arran .........

The NHS consultants and staff at the Beatson, Ayr Hospital, UCHL and Guys have been absolutely amazing and have looked after me so well. A huge thanks to all you guys, very much appreciated.

Love you to the stars and back Marydoll, for all your patience, support and love ♥

Catch up again soon.

Take care, G x

Hi amazing family, friends and followers,

A lot to update you on this time, both positive and negative, so here we go !

Unfortunatley, starting with a negative !!

A few days after coming out of a 9 day stay in the Crosshouse Hilton, I was feeling really rough and looking like I had been dragged through a hedge backwards, so Marydoll kicked into gear and phoned the cancer helpline for advice. They advised I go straight back to the Combined Assessment unit in Crosshouse hospital where they re-admitted me. After blood and urine tests came back the following day showing I was in kidney failure, I was urgently transferred to Ayr hospital for a bi-lateral Nephrostomy procedure. 

This was done under a local anasthetic and was very uncomfortable, to say the least. Apparently, this 'permanent' procedure was required as my prostate had enlarged so much with the cancer that my ureters ( tubes from kidneys to bladder ) were blocked.

I spent the next few days recovering in the ward before getting home with my nice new and shiny Nephrostomy bags and all the associated external pipework.

This is one of the solutions I have been using, the other is even more cumbersome.

Sleeping is proving very difficult as I need to sleep on my back ( previously only when I had too many sherberts ! ) and I get tangled up with all the pipes and gubbings, but I am sure I will get more used to it as the time goes on.

And it gets worse, a couple of days later I was in extreme pain and Marydoll had to rush me back up to hospital. I had picked up a kidney infection ( was like a knife twisting in my back ) and had another short weekend break in Ayr hospital hooked up to intravenous antibiotic drips !  When I got home, one of the bags burst at 04:00 am and we had early morning coffees with the oncall district nurses to change the bags ! You couldnae write the script !

It gets better.....promise :>)

A few days later we headed off down to London to support Cara in the London marathon.

Unfortunately, I couldn't make it down on the Friday night before to meet up with my old BofA buddies for a catch-up ( apologies for cancelling at short notice Bob, John, Steve and gang ) but will make every effort to get down for the next reunion 'piss-up' in the summer.

Cara was a wee superstar, she finished the marathon in just over 5 hours despite pulling her hamstring around the 12 mile mark. Cara and her friend Erin managed to raise over £5K for Macmillan Cancer support. An outstanding achievement from them both and a very proud Dada and Mops to boot. A huge thanks again to everybody for their very generous donations.

Then is was off to Eurodisney with Cara, Jamie, Katie and Marydoll on the Eurostar, where we later met the rest of the Garven clan at the hotel in Disney ( 15 of us in total :>).

The 'Vienna Magic Circus' hotel was perfect for our 3 night stay and all the wee ones had a ball moving from room to room for wee parties and sleepovers.

I must share a hilarious moment from our youngest grandchild Jake.

He was tucked up in his circus tent bed with his own wee telly watching Penguins from Madagascar ( in French :>) when I was sorting out my plumbing to go to bed.

He came across and sat on the end of the bed and said, "are you having a pee in your bags Grampa", followed by "I pee from my willie, I have a wee willie, do you have a wee willie Grampa".  I said yes. He then said "my daddy has a big willie", then paused for a few seconds and said "so has my mummy".  I nearly fell off the bed laughing :>)

'Girls' looking good in their designer nightwear :>)

There was 7 in the bed and the little one said, "roll over"

We all had an amazing 2 days in the 2 Disney parks, the weather was superb and my 'disability' proved beneficial as I got a special pass for the rides and was allowed to go to the front on the queues with 4 helpers. This helped us go on nearly all the rides ( some more than once ). Felt a bit guilty, but hey ho !

The only downer at Disney was that wee Josh picked up a tummy bug and was very sick and had the runs, but he picked up a good bit on the 2nd day and was able to go on most of the rides.

Great times for all and Easyjet didn't pull me up for having more than 1 bag on the plane :>)

However, another damper as soon as we got home !   I got a call from my amazing consultant from the Beatson who gently informed me that I was not a geno/DNA match for the Immunotherapy clinical trial and that the Beatson would not now also consider me for the only other current trial option, PSMA Luticimide. This was not on medical grounds but because I now have the Nephrostomy where radiation leakage in my urine had health and safety considerations ! 

However, other NHS trusts may not consider this an issue and my consultant is writing to them to try and get them to take me on ( London looking like the favourite if I am lucky ).

We have now been referred to the Ayrshire Hospice for support with pain control ( which is pretty severe at the moment ) and for complimentary therapies and drop in support groups etc to help both Mary and myself at this particularly stressful and difficult period.

I will continue to explore other avenues of 'non standard' treatments and am far from throwing in the towel.

Many things to look forward in the coming weeks including wee Jamie's 1st Communion and some trips over to our caravan in Arran.

As always, I have to thank Marydoll and my amazing family and friends for all their support and positive vibes and a huge thankyou to all the staff at Crosshouse, Ayr and the Beatson who have been total superstars and looked after me so well.

Need to stop now as I am 'all bagged up' and need to go to the loo :>)

Love you All, Big G xxx 

Hi amazing famiy, friends and followers,

A fair bit to update you on since my last update.

After much deliberation and discussion with family, I decided to complete the scheduled 10 sessions of chemo. It appeared to be 'doing something good' as my PSA blood results continued on a downward trend. I would be telling lies if I said it was easy, it certainly was not. The cumulative effects of the chemo were totally draining and many of the side effects worsened after every cycle.  The fatigue was the worst, it was an effort doing even the most simple and mundane of tasks. My appetite was poor, I had a horrible metal taste in my mouth, my nails started to fall out, my feet were constantly numb and I was looking very baldy ( like most of my mates :>)

But with loads of rest and amazing support from Marydoll and the rest of the family, it certainly loosened the load.

Unfortunately, and as per the trend graph above, my PSA has ( not unexpectedly ) started to rise again, albeit not too rapidly as yet.  My PSA is now at 80.2 and because it had risen above the upper threshold of 65 for the Procaid ( AZD 5363 ) clinical trial I was on, I was taken off the trial. More about future trials later in the post.

During this period, I didn't just sit on my butt all of the time ! We still managed a number of visits over to our static caravan in Arran, got out for a few nights with my mates, met up with my prostate cancer buddy Jim in Glasgow, meals with family and a fantastic corporate day at Ibrox with Marydoll, Jonny and wee Jamie, courtesy of the Rangers Charity Trust. This was an amazing day where they fed and watered us, watched a game from the comfort of a suite and got to meet some of the players ( old and new ) and was topped off by a visit up the marble staircase to the blue trophy room ( unfortunately most of the trophies have just been gathering dust over the last few years :>(

Wee Jamie had ( in his own words ) his best day ever and he got his photos taken with Ryan Kent, Borna Barisic, Andy Halliday, Wes Fotheringham and Nacho Novo.

Wee Jamie looks like a 'mini me' with his smart suit on ♥

Great times, but unfortunately I had a bit of a set back a couple of weeks ago !

I had an acute numbing pain in my left leg and after trying to ignore it for 24 hours,

finally agreed for Marydoll to take me to hospital after it got a lot worse and wouldn't

support my large ( ish )  frame !

So into the combined assessment unit at Crosshouse hospital where very quickly they sent me for an xray and MRI scan of the spine.  Good news was that it wasn't spinal cord compression !

I got moved up to the general oncology ward where I had to bed rest until I could get a further MRI scan on my left femur. 

However, I did manage to escape for a night, where one of the nurses, in conjuction with the duty doctor, organised a pass for me to go along to my Sister Fiona's house where the family had organised a surprise birthday party. This was on the proviso that I used a wheelchair while I was out ( huge thanks Moira for the loan of your Dad's chair ).

I finally got the 2nd MRI scan on my 8th day in hospital. By this time I was getting a bit stir crazy and discussed setting up an escape commitee with some of my chums in the ward.

It was like something out of 'One Flew Over the Cuckoo's Nest' :>)

I met some lovely folks in the hospital, including a sailor, farmer and a main stream rock star from the 80's.  ( Stevie Cusack from Sniffing the Pink....check out some of their stuff on iTunes, definately worth a listen ). Hope you are getting much stronger now Stevie.

The nurses were amazing, great fun, so supportive and nothing was ever too much bother.

I don't know how these guys can do this every day and still keep so positive with a smile on their face. They literally are 'Angels'.

The 2nd MRI scan picked up more cancer tumour deposits in my left femur causing nerve pain. This, believe it or not, was good news as a fracture was suspected. ie, tumour growing in the bone and splitting it....ouch !  So no procedures required for now as the pain is totally under control.  Must have been lots of bed rest, pain killers and pampering :>)

As I mentioned in a previous post, I have now exhausted all the 'standard' NHS treatments

so trying to get onto more clinical trials is the path forward.

I am currently been considered for 2 trials :

1.  Immunotherapy where previous biopsies I had taken are being analysed to determine if I am a match ( approx 30% chance )

2. PSMA Luticimide where I have around an 80% chance of being a fit then a 66% chance of getting the cocher treatment ( as opposed to placebo )

Hopefully I will find out more in the next few weeks.

Well this has been a bit of a rant this time, but need to mention a couple more things before I close out this post.

My daughter Cara is running the London Marathon in aid of MacMillan Cancer Care.

She has never even run for a bus before, so this should be interesting :>)

Cara is nearing her donation target, so if you can afford a few bob to help her get over the line, it would be most appreciated.

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?pageId=1011110

And I can't close without mentioning again the amazing love and support I have received

during this rather arduous journey. Especially for my 'wee rock' Marydoll who should have been a juggler in the circus !

Along with looking after 'yours truly' and working, she has also found the time and energy to complete her training for the Scottish Children's Panel.  This is for volunteers in Scotland who support vulnerable children and young people and their families in their local communities. Well done Marydoll and to my son-in-law Jamie who has also just completed his training.

Only 3 weeks now until our family adventure to EuroDisney. I can't wait to see their beautiful wee faces light up with excitement :>)

Well thats all for now folks.  Keep well and happy xxx

Hi amazing friends and family,

My daughter Cara is running the London marathon on April 28th 2019 in aid of Prostate Cancer research.

Please sponsor her to hopefully help eradicate this nasty disease for the generations to come. Even just a couple of quid if you can, every penny counts.

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?pageId=1011110

nb. Cara and I can go halfers on a wheelchair after the run, sure she will need it anyway :>)

Cheers, Grahame

Hi family and friends,

I have now completed 8 of my 10 scheduled chemotherapy sessions and to be totally honest, it is now proving to be a something of a challenge !  I am constantly exhausted and have little or no energy. Recovery times are taking longer now after each treatment and the side effects are increasing.

I had an appointment with my oncology professor last week and the bottom line is that he has advised me to stop the chemo treatment and concentrate on quality time with my family and friends. All convential treatments have now been exhausted and it is now about trying to enjoy the time I have left without the horrible side effects.

Although the chemo has resulted in a substantial reduction with my PSA count and even a slight improvement with the cancer in my bones, it is just keeping me in 'limbo' ! 

There is only one site where the cancer has spread and this is on my bottom left rib cage where unknowing to me, I had fractured a rib after a fall and the cancer has attached to the site !

Unfotunately when the chemo stops, the regression is usually quite aggressive !

My Prof is now talking months rather than years and has given me an estimated 50% chance of still being here in 9 months and a very small chance of lasting a year.

Not great odds, but I am in the habit of 'bucking the trend'.

The fight continues and I am certainly not throwing in the towel just yet :>)

Now it will be one day at a time and concentrating on planning for when my energy levels hopefully improve.

"I can't control what time I have left but I can choose what to do with it"

I have booked a trip for all my family ( x15 ) to go to Disneyland Paris for a few days at the end of April and only yesterday purchased a lovely static caravan overlooking the Holy Isle on the Isle of Arran.  Really looking forward to spending more happy and relaxing times in Arran with my family and friends ( Marydoll and my favourite place in the world :>). 

My daughter Cara is running the London Marathon on the 28th April to raise awareness and donations for Prostate Cancer research. I will share more details when I have them and hopefully cancount on your support, no matter how small.

During my long battle with this nasty disease, you have left so many lovely and uplifting messages, so please don't feel obliged to comment again. A simple 'like' on Facebook is more than enough.

Again as always, I am sure I wouldn't have lasted this long had it not been for all the incredible love and support from all my family and friends, especially my wee Marydoll who is my rock.

Take care and keep well and if you are a male of a 'certain age', get down to your local GP NOW and get yourself checked out.

Hi all,

I have now completed cycle 4 ( of 10 ) of my chemotherapy and clinical trial ( Procaid AZD5363 ) medication, so thought it was time to share a quick update.

There is no doubt about it, Chemotherary treatment is tough !  It takes the wind right out your sails and feels like a terrible hangover ( x 10 ) ! 

My worst period is from day 3 to day 6 or 7 after treatment, where I have been totally wiped out, exhausted, feeling really 'yucky' and have a horrible metallic taste in my mouth and nearly all food / drink tastes the same !

The good news is that from day 8 onwards, things start to improve quite quickly and near normality returns. I have been plotting trends for each 21 day cycle so far and included it in the graph below. ( the totals are built from daily scores for pain, sleep, stiffness and general feeling where 20 would be the max score ).

I lost a lot of my hair after the first cycle, but this has slowed down and I still have more hair than most of my old baldy mates :>).  Pain control and sleep have been good.

So far, I feel quite lucky that I have generally tolerated the treatment very well, compared to many other men I have talked to.  There is also the Procaid trial, a 50% chance that I am on an active drug rather than placebo. This may be helping a bit ? 

My Consultant Oncologist informed me that a lot less than 50% of men manage to complete the 10 chemo sessions due to the severe side effects, so this has given me the challenge to complete all 10 and get the averages up a bit :>)

  I have also included a picture of the last nuclear bone scans I had taken.

The 2 images on the left ( slightly different angles ) were before I started the Radium 223 treatment and the 2 images on the right after the Radium was finished and just before the chemo started.

You can see how aggressively the disease has progressed, the worst of it in the lower spine and pelvis and even in the face !

 Now for the good news. My PSA blood count has dropped significantly since I started the chemo ( and trial ? ) , so it is doing 'what it says on the tin'.

I have included a PSA trend graph below which includes the treatment I was having when my PSA bloods were taken. Most of the drugs did nothing or very little, but you can see a huge jump during my Radium 223 treatment followed by the very promising downward trend on the chemo. If I can get this count down to double digits, it would be amazing.

 In the last few weeks, we have managed a trip down to London to catch up with family and some good old BofA friends. We also managed a week in Tenerife to enjoy the Autumn sunshine and just do nothing for a week with our good friends Tommy and Julie :>)

All my 'wee people' continue to keep me busy and put a big smile on my face, wouldn't swap it for the world !  And Marydoll  ( should be Saint Marydoll ) for being the best and most caring wee wifey in the world  ( Love you millions ).

As always, a huge thanks for all your good wishes and support which is so valued and appreciated and remember guys, any changes in toilet frequency and/or sexual changes, please please get it checked out. It is free and painless !   ( Wives, partners...do your bit )

Let the battle continue, bring it on :>).

Finally got accepted for the 'Procaid' clinical trial after borderline ECG heart rythm tests that had to be redone a few times to meet the criteria !

As I commented on my previous post, the trial involves 10 cycles of Docetaxel chemotherapy ( 3 weeks apart ) at the Beatson in Glasgow, where 50% of participants are randomly selected for AZD5363 which is a new targeted therapy designed to interfere with a cancer's ability to grow by blocking growth signals in the cancer cells ( ProCAID trial phase 2 ).

I don't know if I am on the drug or on the placebo ( neither will the Professor ), so fingers crossed.  Also on steroids now to control risk of infection etc.

Docs decided against further targeted spinal radiotherapy and bone strengthening infusions for the moment as hopefully the chemo will do the trick for now.

Feeling pretty 'shitty' before the trial started, tired and exausted ( as seems to be the norm now ! ) and increasing lower spinal pain and discomfort. My PSA has shot up to 462 ( I remember being concerned when it reached double figures ! )  Having said that, very few other problems and a recently increased dosage of 24 x 7 morphine keeping the pain under control the majority of the time. 

Anyway, now 3 sleeps into the Chemo and 'trial' and so far so  good.  Feeling much the same, albeit a bit spaced out ! No sickness or diarrhoea, but the latter would be welcomed for a 'guid cleen oot' for the morphine induced constipation :>)

However, all much better than I anticipated.  Early days yes, but long may it continue.

The organisation, communication and staff at the Beatson clinic in Glasgow has been exceptional and I certainly feel that I am in the best hands possible.

Still enjoying the simple things in life, family time and managing to keep positive. Unfortunately alcohol is not agreeing with me so I prefer to do without, so don't need to toss for who is the driver anymore!!!

Walking the dog is now more of a challenge but Maydoll keeps him well exercised!

Most days I feel too tired for exercise.

Looking forward to Tenerife in October and days here and there in the camper van.

Was hoping to be in France this weekend for Magali's wedding ( our amazing au pair from our London Days ), but treatment schedules have prevented us from travelling just now.

Wee Keira starts school ( 4 grandkids down, 2 to go ) and Cara starts her new job in Whitehall on Monday.   Loads to look forward to.

As always, a huge thanks for all your good wishes and support and hopefully many more blog updates to come.