Remembering ‘The Bob Garratt’ – Blog 63

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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

 

 

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Final Goodbye – Blog 62

Dad in his prime...
His favourite photo & how he wants us to remember him

Thank you everyone for all your continued love, support and kind words.

Whilst this is not the blog I ever wanted to have to write, the day has finally come. My Dad passed away this morning at 7:25am Spanish time.

He was not alone and died peacefully when the time came. He is no longer in pain and no longer suffering. He battled courageously for 21 months and despite the initial prognosis giving him just 6 months to live, we were blessed to have been given so much more time, thanks largely to just how strong and resilient he was.

We have so many happy memories and it’s those I want you all to remember and celebrate. With this in mind, it is our intention for Dad to be cremated at a service held in the Tanatorio at Xativa. This will be held on March 1st at 12pm. For those that can attend then we look forward to welcoming you in celebrating Dad’s life. For those that are understandably unable to make the trip over we are planning to have a secondary memorial to be held in England.

I do not have a confirmed date for the English side of things at present. It is our intention to hold it at the Church in Awsworth (TBC) with a gathering at a local venue shortly after. As and when these details are known I will look to share accordingly.

By no means do we feel defeated by today’s events. Whilst Cancer may have claimed Dad’s life, his spirit will live on in all of us. The strength he showed in his darkest days will stay with me forever. My Dad was a proud, happy, loving man and always will be. His jokes were questionable at the best of times but we will always love him for them.

Sleep well Dad, we love you so much and always will xxx

Facing the Final Days – Blog 61

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Whilst the news is not entirely unexpected, I must admit today (Tuesday) has been heart breaking. Up until now we have been watching my Dad fight his battle with Cancer. We are now watching him die.

Pain is just a regular occurrence now, though thankfully the Palliative Team were due to visit Dad and offer their assistance. However, it was clear within seconds that the news was not good. We are now facing just days. It’s highly likely, if not a certainty, that my Dad will be gone before the week is out, if not sooner. We have been advised to prepare ourselves and make any necessary arrangements.

All current painkillers have ceased with immediate effect. Instead they have been replaced with Morphine injections to help Dad remain as pain free as possible until he passes. The ceasing of all tablets also included the sodium pills which have been keeping him out of hospital. Basically, the sodium levels will fall, but Dad will be gone before this becomes an issue.

No amount of awareness or kind words can truly ever prepare you for the inevitable. My Dad is one of life’s good guys. A wonderful husband, dad, grandfather, brother, uncle, friend and a beautifully upbeat person.

I can’t really express in words how gutted we feel that Dad will soon be gone. Clearly, I am thankful for the time we have been given and in many ways we have been extremely lucky with the huge amount of time we have been blessed with, in order to create memories.

No matter how gutted we feel, the silver lining is that the Morphine is intended to make the next few days as easy as possible for Dad. In addition, he is at home, in his castle, with his loved ones around him. He is however a shadow of his former self and simply no longer has the energy left to fight. In some respects, I can’t fault him. He has fought proudly with his head held high for far longer than we could ever have hoped for. My Dad an amazing man.

These next few days will be tough, horribly tough. Ultimately though we are proud of him and love him very much.

One Step Closer – Blog 57

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The last few days have been quite fraught for Dad due to today’s impending Colonoscopy. The whole situation has been draining for him psychologically more than anything else.

He has coped well with the restricted diet, even managing to take to drinking black coffee with relative ease. Black tea has been a no go, though this was expected. Otherwise he has been eating just fish, toast, rice and soup. Quite a healthy diet in some respects.

More than anything though the expectation connected with the taking of an enema and what may or may or not be found, has caused him much worry and to feel uncomfortable.

Three laxatives and two enemas later, we arrived at Xativa Hospital and Dad waited ‘impatiently’ to be called through for the procedure; 45 minutes passed by and it was all over.

The news is technically great though the procedure itself failed. Although they were not able to fully assess the bowel where the suspected issue was, doctors are confident enough that we are no longer dealing with a further tumour.

This means that the Immunotherapy treatment (at this stage) will more than likely be given the go ahead; although we have still not received the full thumbs up yet.

A further scan on Dad’s bowel will be carried out next Wednesday, though this time he will not need to follow a restricted diet and will only need one enema the evening before. They have not said what the scan will be but it sounds like it may be a barium style scan or some other such specialist scan; either way they do not seem unduly concerned, they simply want to get to the bottom (ahem) of what may be happening down there.

It remains to be seen if Valencia will give the go ahead for the Immunotherapy treatment before next week’s second bowel scan, though the Oncologist has said she will let the team know that Colon Cancer is not suspected.

Having left the hospital, you could see Dad’s mood lift; like the weight he has been carrying, has been lifted from his shoulders.

His main concern continues to be his weight loss, especially with regards to his legs which have become very skeletal in their appearance. His arms are not much better and due to the small levels of food being consumed his energy level remains very low.

Due to his tiredness, he also becomes easily agitated and has bouts of grumpiness that would give even the entire cast of ‘Grumpy Old Men’ a run for their money.

To restore a bit of light and positivity, one good news story I have read this week was on February 4th (World Cancer Day).

Immunotherapy is advancing tremendously and trials have been taking place for some time. A patient with what I believe to be just Lung Cancer with no spread to other areas of his body was given just 12-18 months to live. This was 3 years ago! After receiving a trial course of Immunotherapy, he now has NO traces of the disease.

Different results are clearly seen across those that have taken part in past and current trials. However, this is the first time I have read that Immunotherapy has actually cured someone!

I’m not going to get too far ahead of ourselves but rather than believe we are facing the end, I thought for once even whilst the odds may be stacked against Dad, there is still time and there is still a chance that his resilience and fight will pay off.

Enema of the State – Blog 56

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Results from the eligibility tests carried out last week in order for Dad to receive the Immunotherapy ‘go ahead’ are slowly starting to trickle in. The approval news is anxiously being awaited and now more than ever it’s needed. Dad’s mind, which was his last stronghold has started to waiver. The strength of mind he once had is struggling and whilst at times he is able to muster up the energy to put on a show for those around him, the truth be told he is simply shattered all day long and is beginning to question ‘what’s the point?’

Gone are the arguments with him trying to overdo it. He knows himself or at least feels now that he is simply not capable. The hardest part is seeing the emotion. His eyes ‘well up’ at the smallest of things and he is very reflective over life that was and life that could have been. He also has the ‘death look’. No easier way to put it. The colour has gone from his face, he looks very thin, sleeps all day and his eyes are bulging like a baby Gremlin yet with a vacant look about it.

He has no appetite and although the Oncologist has said having no appetite is to be expected, this has not eased his mind any further. He is desperate to eat, just simply doesn’t want to. The weight loss, as a result of not eating is stressing him out. Fortunately, the Oncologist has said that as long as he continues to drink, she is not overly concerned about the lack of food being consumed. The good thing is that he is finally drinking the required amount of fluids and his sodium levels have thankfully stabilised. With Sodium levels at 142 he is no longer having to go for regular top ups, which is a result worth celebrating.

We had hoped that we would have received the approval news for the Immunotherapy by today. When we received a call earlier inviting us to the hospital we hoped that this would be the lift Dad needed. Unfortunately, yet another hurdle was put before him. This time they have been asked by the specialist team at Valencia, who are running the Study Trial, that Dad needs to have a Colonoscopy performed.

Whilst pretty much all eligibility checks have been passed, one of the scans has flagged up a potential issue in Dad’s colon.

At this stage they cannot be certain what the scan is showing, hence the request for the Colonoscopy. There is a chance it is another disease known as Diverticulitis. This itself should be fairly simple to treat (in respect to everything else that is going on). It has also been suggested that it could be that the cancer has spread to this area too.

In preparation for next week’s ‘examination’, his diet will now be restricted. Technically this isn’t really an issue as he barely wants to eat anyway. His allowable foods will be just the following: tea, coffee, filtered juice, non-fizzy pops, soup, fish, rice, toast & hard cheese. He is not even allowed milk, so I can imagine his displeasure when he is served either a black tea or coffee.

In preparation for the Colonoscopy Dad will need an Enema so that tests can achieve a good result with clear visibility. All I would say is that based on how the Enema needs to be administered and the results that should be achieved in just 5 minutes, then none of us truly wants to be present when Dad administers the two 250ml solutions on Tuesday night and Wednesday morning!

The result of the Colonoscopy will also severely impact the Immunotherapy eligibility. If there is a tumour, the Trial will be terminated. This would be an extremely bitter pill to swallow at such a late stage; especially given that the Trial is Dad’s only real chance of a longer life. If it turns out to be a disease, other than a tumour, then the Immunotherapy could still be given the green light.

It’s going be a long few days and the light at the end of the tunnel is not looking very green at this stage.

Nothing Ventured, Nothing Gained – Blog 51

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Dad managed to make it to the scheduled appointment on 4th January for his progress review. The appointment got off to a bad start with a misunderstanding as to the fact that we were meant to have arrived earlier for blood tests however, thanks to English naivety and the batting of our eyelids the medics took pity on us. He had blood taken and we were asked to wait a couple of hours for the lab to get the analysis done.

Surprisingly at this stage his sodium levels had kept themselves stable though he was still showing signs of dehydration. His kidneys were also not at full capacity though the Oncologist was happy with how Dad was in himself and the balance that had been found.

The Oncologist suggested an appointment be made for Dad to attend the hospital at Valencia on Tuesday 10th so that a specialist could look through his medical file to consider him for Immunotherapy treatment. Whilst this treatment is still in ‘clinical trial’ status for Dad’s advanced stage of cancer, it has at least been tested on other forms of lung cancer with some promising results.

Don’t get me wrong, at this stage of the game, Immunotherapy is very much a shot in the dark and it is unknown as to how it will impact Dad’s cancer. However, the Oncologist has said that if she were to pick which road to take; between either a third round of Chemo or Immunotherapy then she would recommend Immunotherapy without a doubt. This is mostly because she believes whilst a third round of Chemo is possible, it may actually cause more harm than good.

The thing with clinical trials is that whilst all protective measures are taken things can go wrong so, more than likely if he is considered, a disclaimer will need to be signed. Personally, my view on this is that it is worth the shot; nothing ventured, nothing gained. It also means he still has ‘hope’ to cling onto which is to be welcomed.

Things going wrong was made ever more the clearer with another unanticipated hospital visit yesterday! Dad had started to have a ‘fuzzy’ head and pains in his sides as well as diarrhoea. This time, rather than second guess and wait, we took him straight to hospital. Having waited a couple of hours and following numerous tests it was confirmed his sodium levels had fallen and that he would need to stay in for 24 hours.

They confirmed also that he is still showing signs of dehydration. The thing is he is NOT drinking the required amount of fluids. He claims he is but the evidence shows otherwise; he isn’t drinking and will do anything and everything to avoid drinking, including trying to fool those around him.

I once said I was proud of him and I am. However, one area where my patience is tested is in his attempts to subvert his fluid intake. He knows he will die if he doesn’t drink enough. We have tried the nice approach, nasty approach, informed approach, the medical approach, the sneaky in other food approach and none are working.

The best thing I can say is that his mind is still quite focused on going forward. He is, deep down, aware that his time is nearing an end however, he does also believe that a miracle cure will eradicate the cancer from his body. It’s this mindset that has kept him going, possibly in some respects more so than any fluid intake requirements.

Good news came today in that he was released from hospital. It has been confirmed that he will need sodium ‘top ups’ quite frequently as his levels are expected to constantly drop. He has also been informed that without drinking, he will suffer. Still he does not listen….

Spirits were boosted this week by a couple of family reunions.

Steven & Nicola visited on Monday and got to spend some quality time with Dad in his own environment. We visited the local town of Canals and had a nice few hours together. Dad especially liked being able to see Nicola, having not manged to see her when Steven and his two kids visited just before Christmas. More visits are planned.

On Wednesday night, Dad’s two sisters and niece all arrived to visit. They didn’t get to the house from the airport until 23:15 though. Dad had stayed up, especially to see them arrive at the house; normally he would be in bed by 22:00 so you could tell how excited he was about seeing them. I won’t go into too much detail about Thursday’s events, but I will say the day was brilliant and gave everyone the opportunity to enjoy each other’s company and build some lasting memories.

Dads’ presence in Spain does make it awkward for family and friends to see him, but I can assure you all, that he is happy here and content that this is where he wants to live out his days. It does mean that for some they won’t get to see Dad before his time comes, but it doesn’t mean that he isn’t thinking about you as much as you will be about him.

I would encourage family wanting/able to come and visit, to do so sooner rather than later. Regrets take seconds to form but can last a lifetime.

 

Rubbing Salt in the Wound – Blog 50

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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