Blog 64 – Keeping Conk: A Journeys End

 

Cruz Año Santo 1951 Canals

On 14th October 2017, Dad was laid to rest in his chosen place here in Spain. His wishes were to have his remains scattered under the Santo Año Cross which looks over Canals and his Castle. Google maps location: https://goo.gl/maps/krStPKmbLhE2

He wanted to live out his days here and forever keep a faithful watch over the place he called home. As my mum has said, he is overlooking his kingdom and is now free.

The cross is clearly visible from the house, as is the house from the cross. Dad had also scaled the mountain with both Mum & Alan as well as with David & I just a couple of years ago whilst he was undergoing treatment.

We were also blessed to have Jim & Val join us for the final goodbye and Jim kindly shared these words with Dad having now been set Free:

Don’t grieve for me, for now I’m free

I’m following the path God has laid for me.

I took His hand when I heard him call;

I turned my back and left it all.

 

I could not stay another day,

To laugh, to love, to work, to play.

Tasks left undone must stay that way;

I found that peace at the close of day.

 

If my parting has left a void,

Then fill it with remembered joy.

A friendship shared, a laugh, a kiss;

Oh yes, these things, I too will miss.

 

Be not burdened with times of sorrow

Look for the sunshine of tomorrow.

My life’s been full, I savoured much;

Good friends, good times, a loved one’s touch.

 

Perhaps my time seems all to brief;

Don’t lengthen it now with undue grief.

Lift up your heart and peace to thee,

God wanted me now; He set me free

 

These beautiful hills, the view I measured

Looking down on the castle that I treasured.

Now by your care I’ve been placed in tranquillity

Blessed by your love for all of infinity.

Whilst the past has gone, Dad will remain present in our hearts and in our memories.  R.I.P old man. Xxx

Ano Santa 1951

Advertisements

Remembering ‘The Bob Garratt’ – Blog 63

_DSC4604.jpg

The UK memorial for Dad will be held on Friday March 17th at The Parish Church of Saint Peter, Main Street, Awsworth, Nottingham, NG16 2QU. The service will commence at 15:00.

Afterwards there will be a gathering at The Crown Inn where we will have the opportunity to celebrate and remember his life and what he meant to us all. The Crown Inn, is just 100m away from the Parish Church.

My Dad was a much loved man and this was evident following his Cremation here in Spain on March 1st. A number of friends and family attended the service and the day was a fitting tribute and send off for one of life’s true gems.

This will now be the final blog I write on behalf of Dad. It started as an opportunity to not only keep friends and family informed about Dad’s progress but also to add to the information available out there for families who find themselves in similar situations.

What I hadn’t accounted for, was the level of support it would give us back. The love, loyalty, understanding and compassion that friends, family and total strangers have shown us has been overwhelming. All of which has helped us walk down the unknown path together.

In a world that is so often consumed with war and hatred, I have been honoured and blessed to be part of a story that has contained strength, courage, love and resilience. Cancer took my Dad’s life, but his spirit will live on forever more.

I would also like to take this opportunity to thank just a few of the people that have been there for my Dad. There are dozens more though these particular people have helped more than I can perhaps every truly convey:

Jim & Val Jordan: My Dad had nothing but love and respect for you both. He loved you both dearly. He would have been proud of the service you gave him on March 1st. I know I am. Despite it being brought forward 50 years.

Tom Rigg: There are not enough words I can find to express the sheer gratitude for the support and love you have provided my Dad and family. Without you, this situation would have been unbearable. Eres una Estrella. Gracias.

Gloria Brook: You have done more than you may very well know. Your compassion and understanding has helped us navigate the unknown in a more clear, positive and grounded manner. Thank you.

For those that attend next Friday, I look forward to seeing you.

Thank you & God bless you all xxxx

P.S.

Two cannibals eating a clown, one turned to the other and said: “Does this taste funny to you?”

I have a gravel path in my garden while my neighbour’s is concrete. I think mine wins on aggregate.

Two snowmen in a field – one says to the other “Can you smell carrots?

xxxx

 

 

Immuno Olympics – Blog 55

hurdles

The long-awaited results week is upon us and news is coming in thick and fast.

On Tuesday, the eagerly anticipated phone call was received and to everyone’s relief, especially Dads, it was confirmed that his Cancer did have the protein that the Clinical Trial is designed to work with.

This was just the start of the week of hurdles Dad would now need to jump over to ensure he continued to be eligible to receive the Immunotherapy treatment that is, in all honesty, his last chance of living an extended life.

Having been informed that the protein was present, the Doctors had scheduled in two visits to Valencia ‘La Fe’ Hospital. The first was today and consisted of a series of blood tests, an ECG, a general health review and a meeting with the Doctor.

The most important element of today’s visit was the sodium levels. Should these be out of kilt, then the trial would not be able to continue and Dad’s chance at treatment would be cancelled. The amazing thing is that now there is a chance, the tests are being carried out with results coming back quickly.

I must admit I did have to feel sorry for the nurses today, as it took them a good 45 minutes just to get the blood samples they needed due to how poor Dad’s veins now are and the fact that the veins keep collapsing and making the blood extraction process nigh on impossible. Thankfully, the nurses are extremely patient.

The sodium result was that his level is now at 140!!! Ironically this is technically too high with the ideal being between 125-135. This however, is the game of balancing that the Doctors have been battling over for the last few weeks; it would appear though that a good compromise has now been found.

Dad is under strict orders to consume no more than 1 litre of fluid per day. This includes tea, coffee, water, juice, soup etc. This coupled with the fact he has been put on sodium tablets has clearly done what was needed.

There is a slight issue in that the salt overload and lack of water is impacting his renal test results however, again this is a compromise the Doctors are happy with. It also means that the ‘Immuno Go Ahead’ Is still within grasp.

The next hurdle comes tomorrow with a full body scan to be conducted (MRI & CT scan). This is so that the Doctors running the trial can take a true snapshot as to exactly what they are up against to ensure that they can fine tune the treatment and tailor this to Dad’s requirements. It could still be that things have gone too far. The hope is though that having reached this far, they will give it a blast regardless.

Once we know if Dad gets the full go ahead I will provide an Immunotherapy update in terms of what to expect, lengths of treatment, side effects, disclaimers etc… We should know before the week is through.

Finally, having returned after a few days away, I must admit that I have not seen Dad look so terrible. This is not to upset anyone, just it’s only right you know how he is both physically and mentally.

Since coming out of hospital he has barely moved, is tired constantly, is, despite what he tries to claim, experiencing countless bouts of pain, looks pale, is sleeping the majority of the time, struggles to do much without getting out of breath, has lost weight and has a very small appetite as well as feeling fuzzy, out of sorts and as he says is “a little spaced out”.

Due to the pain he is experiencing his Morphine patches have already been increased and he also has pain lozenges to suck as well as other painkiller tablets to take.

All this said, his mind is still strong. He is still laughing at times, making jokes, despite saying earlier that he is upset that he hasn’t told ‘himself’ a good joke for a while, and continues to do the worst Cilla Black and Prince Charles impressions known to man.

I admit though that he is not on the scrap heap yet and this week’s news has thankfully gone a long way to help give him a much needed boost. In fact, it’s given us all a much needed pick me up. The road ahead though is still full of many hurdles. The good thing though is that whilst the hurdles are standing in his way, Dad still wants to leap over each and every one of them, failing that he will just be trying to kick them out of the way.

Dark Skies – Blog 53

wired-blog-53
Not at his finest

I left the last blog stating that waiting 2 weeks for the results of the Immunotherapy eligibility felt a little bittersweet given Dad’s current prognosis and health.

Unfortunately, as feared, he did end up in hospital the very next day having collapsed at home; this was last Thursday. We thought sodium levels must have dropped and that the hospital would top up them up as before and that he would be out the following day, giving him the opportunity to live a little more. The collapse though was a little disconcerting.

Sadly, a short hospital visit was not to be. Although the sodium levels were down, he also now had SIADH (Syndrome of Inappropriate Antidiuretic Hormone Secretion). https://en.wikipedia.org/wiki/Syndrome_of_inappropriate_antidiuretic_hormone_secretion.

SIADH is an imbalance in hormone levels causing him to retain fluid. This felt like a cruel joke. We had spent so much time getting him to drink water and now he needed to have none, as his body was unable to flush it out due to the hormonal imbalance.

This also caused a conflict in the doctor being able to treat for the low sodium. They were unable to increase the fallen level until Dad had managed to flush out all the excess fluid he was carrying. Friday arrived and no sodium treatment had yet been given with the medical staff closely monitoring Dad’s fluid balances. The blood tests taken first thing confirmed that his fluid levels were still too high and that the sodium level was now at just 120; lower than it was last week when we took him in. This in turn meant there was no chance he would be coming home today.

By Friday night he had been transferred to a ward on the Oncology floor with Doctors wanting to keep a closer eye on him. They said that he would need to be there for the next 3 or 4 days until things had settled down. Treatment for the sodium level could now start to be given in a very controlled manner and pain killers were also possible with Dad experiencing head aches and shoulder pain.

Saturday morning came and Dad decided he would have a shower to help himself feel brighter. Unfortunately, this had the adverse effect. Having reached the bathroom, he then collapsed for a second time, requiring assistance from the family of the patient next to him. It turned out that his blood pressure had fallen suddenly, causing him to briefly pass out. Thankfully people were around and he was soon attended to and placed back into bed.

Rather than feeling better, he now felt worse than ever, looked worse than ever and was in a terrible state. The Doctors put him on complete bed rest and insisted that he must not get out of bed for anything, not even to sit on the edge of it to eat his dinner.

Anxiously waiting for news, the weekend has felt very long. Dad’s health is at the worst it’s been since his original diagnosis. Having had some further tests on Monday the good news was that his sodium levels had more or less returned to normal despite still being slightly down. The bad news is that the Doctors have indicated that the early results with regards to is faltering blood pressure is that his heart is now weakening. This is made worse for the fact the scan from his original Cancer diagnosis indicated that the tumour was wrapped around his aorta which was why the Cancer was not operable in the first place.

It’s too early to say anything more at this stage. The Doctors are wanting him to remain in hospital with no discharge date mentioned. They want to carry out more extensive tests and whilst he is no longer on strict bed rest, he has orders not to go wandering around on his own as they fear he may collapse again due to how unstable his blood pressure is. This even includes him not being able to toilet alone which itself is not the best of signs.

I guess the best thing I can say is, that he is in the right place. Whilst I know he would prefer to be at home, for now being in hospital is a good thing. Tests can be carried out and he can be observed 24/7. He is also getting 3 meals, 2 snacks, free heating and lots of visitors. Good times.

Finally, whilst the Immunotherapy treatment may not necessarily be a cure, should he be eligible for the trial, it is a chance of an extension to his life. This now, more than ever is hope worth clinging on to.

Immunotherapy (Rovalpituzumab Tesirine: Rova-T SC16L6.5) – Blog 52

blog-52-image

Yesterday we attended the scheduled appointment at the Hospital in Valencia with regards to seeing if Dad would be a suitable candidate to take part in the Clinical Study being carried out on patients with Lung Cancer.

The following website contains more specific details about the treatment Dad would receive if eligible and goes into all the science behind it: http://www.stemcentrx.com/ct-small-cell-lung-cancer.html

Having met with Dr Oscar Juan Vidal (specialist in Oncology & Haematology), Dad did his usual jolly upbeat banter before then being hushed so we could actually hear about what would happen next.

The specific name of the treatment/Clinical Trial is: Rovalpituzumab Tesirine: Rova-T SC16L6.5.

His lung biopsy will be sent to the specialist laboratory in South San Francisco so that it can be analysed and assessed to see if it contains the necessary DELTA 3 Protein (DLL3) that the treatment is designed to work upon. This we have been informed is present in between 60-80% of Lung Cancer patients. Odds therefore are in his favour.

The antibody that has been created by the Clinical Study team is designed to target the DLL3 Protein, enter the tumour and release a potent drug to kill the cells. In turn it is also believed that this targeted method will reduce the impact to the healthy cells. This is especially important at this stage where the administration of a third round of Chemo is being questioned due to the impact on the healthy cells it could harm.

If the DLL3 Protein is not present in Dad’s cancer, then the Immunotherapy treatment will not be possible. Results of testing for the protein will not be known for 10 working days so we expect to know more around the 25th January. If it is a no, then we will attend the pre-scheduled appointment with his usual Oncologist and review what happens next, be this Chemo round 3 or continual monitoring and topping up of his salts etc.

The Clinical Study is still in trial stage so it is difficult to say exactly what impact the Immunotherapy would have on Dad’s cancer. It has been stated however, that results thus far have proved to be promising.

We also know at this stage that should he be eligible, he would only need to attend two treatment sessions. The first would be given more or less straight away and the next 6 weeks later. These would be as a day patient and treatment drugs would be administered intravenously.

There are side effects such as fluid retention, skin rashes etc. though nothing that sounded as worrying as the long list attached to Chemo. There are also associated risks, though the specialist was not prepared to divulge any more detail until the go ahead was given. In essence we need to simply focus on the risk of not having the treatment being worse than the risk of taking part.

The issue we now have is that before Christmas the prognosis was for a survival of ‘weeks’ rather than months; waiting a further two weeks for results feels a little bittersweet.

Dad’s health is up and down like a yoyo and will more than likely he will be back in the hospital for a sodium top-up before the week is out. We also had the home care doctors visit the house today to perform a general check-up and take some blood.

This didn’t quite go to plan with Dad’s veins refusing to give any blood away. The poor doctor left with a minimal amount of the required blood and was crest fallen having stated that this was the first time in 40 years he had failed. This was made worse by the fact that he is the doctor the others go to if they struggle. Blood test results are scheduled for tomorrow morning with the potential for further blood extraction to be attempted if not enough could be analysed.

They have already pre-warned us that Dad could be suffering from Anaemia which would require hospitalisation. This doesn’t even take into consideration the ever falling sodium levels.

Dad himself is doing okay, all things considered, but emotionally the realisation of what is happening to him is kicking in. Whilst he still has the ‘I will beat this’ bravado, it is clear to see he also has the look of concern and anguish as to what may be coming. The thing annoying him the most is his loss of appetite. He barely feels like eating anymore and when he does it’s just a couple of mouthfuls. The main thing for any of those concerned though….. he is still eating and enjoying Bovril, even with his scrambled egg!

I will keep you posted re the Anaemia should there be any concerns, else will update later in the month once we know more from the results from San Francisco. Dad had hoped he may get a free holiday to America out of this.

Unfortunately, this won’t be happening.

Rubbing Salt in the Wound – Blog 50

20161230_173024

I have mixed feelings for having had Dad home for Christmas. Whilst his presence on the morning of Christmas Day was undoubtedly a good thing, his overall health was suffering due to the sodium tablets he was taking.

He had begun to show signs of dehydration, though this was known to be a side effect of not being able to have much fluid. I do however, have faith and confidence that the Oncologist knew what was going to happen and partly this was why a home visit had been scheduled five days after going home. This meant that any concerns could be addressed and sure enough, the day after the home visit, when the results were known, we were informed that Dad needed to return to hospital.

The most unexpected result was that his sodium levels had all but returned to normal with the blood tests revealing it to be at 134mEq/l with the normal range being between 135-145. Therefore, the sodium tablets had done the trick. Unfortunately, just to rub salt into the wound, dehydration had started to cause Renal Failure with his kidneys starting to malfunction and give way.

His Creatinin levels had reached 6.7mg/dl with normal levels being between 0.6-1.10. Creatinin is a waste by-product that is filtered through the kidneys via the blood. The Urea levels were also way to high with his results being 156mg/dl with normal range being between 10-50. Urea is produced in the liver then passed and filtered through the kidneys until being released via urination.

Returning to the Hospital (Lluis Alcanyes), we reported directly to the A&E department where Dad was pretty much seen straightaway and taken into the Emergency Observation Ward; he was put on four drips. One drip was an Isotonic Saline solution, another containing Bicarbonate Soda, another with Sodium Chloride and the final containing a Paracetamol solution for the pain.

You could see a change in him after just an hour though we had been informed that we needed to wait to see a specialist as there were concerns regards the overall kidney condition and they were not sure what line of treatment, if any could be taken. A few hours passed by and he was then transferred to a ward to receive continued observation and the required drips to help the kidneys effectively ‘reboot’. If this failed, then, and only then could dialysis be looked at as an option. Therefore, having returned to hospital on Wednesday we were looking at a discharge date of New Year’s Eve. This is clearly depending on what happened over the course of these 3 days.

The first night was the worst with him experiencing crippling pain. Fortunately, this eased once he ‘demanded’ to have the urethra tube removed at 2:30am. He described the pain as worse than giving birth. I am not going to broach the ‘man vs woman’ pain argument. All I will say is that Dad does not feel pain easily.

The test results we received on Thursday morning were promising. Whilst he was still severely dehydrated, with the nurses now pushing him to drink as much water as possible, the Creatinin levels had improved going from 6.7 to 4.4. This effectively showed that the kidneys may just at this stage ‘reboot’ as hoped.

Psychologically he is not in too bad a place, though still struggles to grasp what is really going on. He has however, had a word with his immune system’s army, including, Jim, Simon, Spartacus, Florence, Marie and Gibbo and informed them all to get their act in order. Errrr…… don’t ask!

Friday (today) had its own complications with his drips not being able to be administered. Basically, he fiddles with the wires which in turn, causes the drips to stop working properly. It then causes the blood to flow back up through the tube and stops it working altogether. This itself would not be so bad, however as his body is slowly giving up it is becoming increasingly more difficult for them to find suitable veins to administer the drips through.

The results we received showed a further improvement with the Creatinin level now being at 2.5 mg/dl and the Doctor felt that the results should be back to normal in the morning. She was also almost happy to let him come home today though was fearful that he would not continue to drink the required amount of water. This time he is now back to minimum 2 litres of water per day with a Mediterranean diet to be followed. Basically, healthy food and no crap.

We now find ourselves in quite a vicious cycle. Should Dad be allowed home tomorrow as planned, the worry is that the Cancer is now so advanced that the sodium levels will nose dive as they did just two weeks ago. If this happens then no cancer treatment including chemo or immunotherapy can be discussed. Treatment would then have to be given to fix the sodium levels which in turn, would more than likely, cause renal complications again. This does not even take into consideration the fact the cancer is continuing to grow and travel through the blood.

It has already been suggested, and we do have to be realistic about this, that there will only be so many times these ‘top-up’ treatments can be given. It is highly unlikely, even at this stage that he will ever advance to Chemo or Immunotherapy treatment stages. The thought of him being allowed home tomorrow, only adds to these concerns. Whilst he does seem almost ready it’s just impossible for us to know how he will react and what will happen next. It also does not help that he is a big kid when it comes to drinking water and makes drinking 2 litres of the stuff seem like he is being tortured. Suggestions on a postcard greatly appreciated.

The hope is that when home, he will have enough energy to at least go out and see the local sites, if nothing else.

The best thing about it is that we will also be getting some visitors over the coming few days. David is making a return on New Year’s Eve, Steven and Nicola will be appearing on the 2nd January and Dad’s two sisters; Margaret and Glenda as well as his niece Belinda will be making an appearance on the 4th January. At time of publication, these will all be surprise visits to give him a boost and encourage him that life is worth fighting for.

The last few weeks have been tough. Dad has been tearful, emotional, has not seen the point in going on and struggled with pains, dizziness, nausea, headaches, confusion and major fatigue. Regardless though we will be seeing him into 2017.

Happy New Year everyone. Love from The Bob Garratt & Co xxx

Praying for a Miracle – Blog 49

20161218_113956-1

Writing today’s blog has been something I have been dreading all week. Being a realist, the news expected from today’s Oncology appointment always felt as though it was never really going to change anything due to the advanced stage the Cancer had reached.

There was the hope that a Christmas Miracle would occur but having already discovered how aggressively Dad’s cancer had spread, the likelihood of walking away from today’s news, feeling positive, was always going to be a tall order.

The medical report from earlier this month makes for grim bedtime reading and this coupled with how poorly he has been this week has just made it feel that things have started to come to a head.

Don’t get me wrong, this week has had some incredible highs. My brother and his two kids came over and we all got to spend some incredible time together. It was particularly special being able to watch him spend time with his grand-kids who he adores. The problem is, he has still been recovering from his spell in hospital and his energy levels and thirst for life is at an all-time low, the lowest since this all started last year.

Today also didn’t get off to the best of starts with Dad taking a turn for the worse with the same symptoms being experienced from just a couple of weeks ago. Having got to the hospital early, they did a blood test and confirmed that the results were bad and that his sodium levels were once again very low.

The fact that his sodium levels have plummeted so quickly is not a good sign. Due to the control the Cancer now has on his body, treatment options are extremely limited, with any option unlikely to provide any significant amount of improvement without potentially impacting his quality of life.

Two options have been discussed:

Option 1 was that a third round of Chemotherapy could be administered. It was made clear though that the likelihood of this providing a good result was slim. The Cancer has grown in mass, strength and intelligence. Such with antibiotics it is finding a way of fighting back thus causing the positive effects of the Chemo to be reduced if not simply eradicated.

Option 2 was for him to take part in a clinical trial which is being run from the hospital in Valencia. This is known as Immunotherapy Chemo. In short this is a new class of cancer treatment that works to harness the innate powers of the immune system to help fight the Cancer. However, little is known as to the impact this will have on Dad with the advanced stage his Cancer has reached, especially considering the growth and spread that has now occurred.

Awkwardly though, neither option can even be considered at this stage, due to how unwell he is. Chemo could kill him and Immunotherapy is just an unknown entity.

So, Mission 1 is to help him recover from the low sodium levels in his body. Rather than keep him in hospital this time, they have given him the choice to be at home for Christmas (with home visits planned). They felt this would be better for him psychologically.

Therefore, he has been given some sodium tablets to take each day for the next week. The problem is that he has been placed on a restricted liquid diet meaning he is not to drink anything, other than a minimal intake of water. The reason being that the fluids would simply flush out the sodium which his body needs time to absorb. The side effect of this is that dehydration could set in causing its own problems and meaning the home treatment would need to cease with immediate effect. We would then have to take him to hospital for ‘Plan B’ to be activated which would be the all day sodium drip with ongoing observations.

The doctor is keen for the home treatment method to occur first as she wants him home for Christmas. No commitment has been made over the time my Dad may have left but it has been suggested that we are now talking a matter of weeks, as opposed to months. The doctor asked what he wanted in terms of ‘the end’ and he responded saying that he wants it to happen in Spain. Dad also asked if the end was imminent and her response was simply “I hope not”.

Dad, as you know by now, is a fighter. He is aware that the end is now drawing closer, though is not allowing himself to give up. Despite feeling terrible and having discussed some extremely morbid topics today, he still managed to find time to ask after all the nurses whom he wanted to say Merry Christmas to. He even managed to steal a couple of crafty hugs.

Also at this stage I just want to take this opportunity to thank everyone for their support. Regardless of how bleak the news and outlook is, we remain strong, focused, resilient and together as one.

Christmas is a time where families, loved ones and friends gather to share a laugh, argue with each other, over-indulge and tell bad jokes. I can assure you that our Christmas this year will be no different. The gloomy grey cloud can wait, for now we celebrate life and the time we have.

Christmas Miracles do happen. We were blessed with yet another one together.

Merry Christmas one and all xxxxxx