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

 

 

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.

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.

Immuno Olympics – Blog 55

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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

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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.