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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Carrots & Love – Blog 58

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The immunotherapy ‘carrot on a stick’ is still being dangled in front of Dad and it’s hard to say if he will ever fully pass all the eligibility checks.

Days and weeks continue to pass by and whilst we are blessed that he is still with us, his health continues to take a battering. It can only be due to how strong he has been during his life that he has been able to battle on so courageously for this long.

He is however tired of it all now. Each time we get to a decision point, another obstacle is put in front of him. This is wearing him down as he feels the road is blocked and he isn’t daft, he knows without the treatment his future path has already been decided.

Following the last batch of scans, we had hoped that a decision would have been reached by now. Unfortunately, they stumbled across the bowel issue which thankfully at this stage turned out not to be a tumour. They have now discovered that there could be a build-up of fluid around his heart (pericardial effusion). If found to be true this again would call time on the treatment hope. As ever though he battles on the best he can.

This current week is full of more tests. We always knew that on Wednesday he was due to have a repeat scan on his bowel to ‘bottom’ out the issue. We also found out though that the trial team needed to repeat all the other tests before Immuno would be given the green light. This is because too much time has now elapsed following the bowel issue discovery.

This meant having a repeat of all the general health checks in Valencia yesterday (blood pressure, blood tests, ECG, EKG etc…). It also included having an ultrasound to fully assess the heart situation. As Dad went in alone we are a little unsure of the result. As far as Dad is concerned, the medics said that all was okay and that his heart was “sound as a pound”. I hope this truly is the result though this fact remains to be seen.

Luckily we will get to see the Oncologist again tomorrow following the bowel scan and hopefully we will have a little more knowledge if the fluid issue is still present or not. It will also give us the opportunity to review the current batch of pain killers Dad is on. The pain is getting frequent now and increasing in its severity. His shortness of breath and inability to muster up the energy to do anything is also taking hold. As there has also been a lot of muscle wastage he is getting a lot of pain in his legs and continues to feel pain in his chest area.

Once we know the outcome from this week’s tests, I will look to provide an update as to what happens next.

As ever, thank you to everyone for the love you have all shown to not only Dad but to all of us. Happy Valentines Day one and all xxx

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

Praying for a Miracle – Blog 49

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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

Tipping the balance – Blog 48

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Monday seemed to come around very quickly and Dad ended up having a full body scan. This itself was a slightly worrying sign as we had just been expecting the normal scan to see where the Cancer was within his lungs

Either way though with the scan done, the results were expected today.

The news is not as favourable as we had hoped for. The Cancer has returned and spread quite aggressively. The last scan result earlier this year indicated that the Cancer activity had reduced significantly and, with little or no activity, he was officially declared as being in remission/partial remission.

This is no longer the case. Cancer has returned and is equal to the size that it started at in June 2015. In addition, it is now of equal amount in both lungs whereas before there were just traces in the second lung. Furthermore, it has spread to the Pleura which is the membrane that covers the Lungs and has also moved into his Liver. All sites in terms of Liver and Lungs have multiple individual tumours. This is not good news.

The good news however, is that he has been allowed home today due to his salt levels having improved and is pleased to have had some fresh air. Having spoken with him on Skype he is looking tired and sounds exhausted though in part this is relief at being home. He has said that he doesn’t really know what is going to happen but he isn’t giving up. He is also thinking of those around him and what he can do to help them….

None of us truly know what is going to happen at this stage. There are still many unanswered questions. Can the tumours be removed from the Liver? Can he have more chemo? Can he cope with more Chemo? Will it make any difference at this stage? Which path should he take in terms of life expectancy vs quality of life? None of these have I an answer for.

All I do know is that an oncology appointment is scheduled for December 23rd. We will at least know more at that stage. Decisions can then be made as to what happens next.

For now though….he is home, he is still getting in some Bob Garratt humour and has not given up. None of us have.