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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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.

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

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.

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.

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

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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.