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

 

 

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.

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.

No Place like Home – Blog 54

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After what we hoped would be a short top up visit to Hospital, Dad has finally returned home… 7days later than expected.

The last week has seen him deal with a number of different emotions, lots of pain, many low moments and confusion as to which was up & down.

Needless to say, he has been in the right place, but like with anyone after a short stay away, it’s great to be back in your own surroundings.

The last week has bought it home to Dad just what he is up against. Unfortunately, the patient next to him in the ward lost his own battle and passed away. The patient that followed, also entered with just a short life expectancy given. I guess this is the problem with being put on an Oncology ward. You get all the expertise of the Cancer specialists however, also get the harsh reality presented to you on a plate that Cancer continues to be a killer.

With regards to his heart I can thankfully confirm that all is clear and there are no signs of the heart weakening as one doctor had suggested. There is still no true explanation as to why his blood pressure keeps falling so rapidly causing him to collapse; though the specialists are attributing it to the Cancer spreading rather than anything else untoward.

As for the pain he is experiencing, Dad has been prescribed Morphine Patches to help give him some much needed comfort. The provision of these pads is often seen as a last resort for Cancer patients to help them in their final moments. This coupled with the Oncologist again asking where Dad wants to die when the time comes does paint quite a sorry picture. I must admit though having looked online, the view of Morphine Patches as a pain treatment is often perceived incorrectly. Doctors are now heavily encouraged to provide patients with the relevant pain treatment for their condition – no matter what stage of Cancer they are at. Not all bad then I guess.

As far as being home and getting on with things, it’s a little too early to say. Dad is on a 1 litre per day fluid intake regime and this now includes everything; Tea, Coffee, Juice, Water, Soup etc… Too much or too little will cause the sodium to drop too quickly or his kidneys to malfunction. It’s also not entirely clear if the 1 litre amount is truthfully too much or too little. Any signs of headaches, fuzziness, additional pain must be acted upon and the Palliative Care Team or hospital need to be notified. He also now needs to have salt on anything and everything he eats.

All I can hope for, at this stage, is that he stays fit and strong enough for next weeks’ trial decision. One thing I do know, is that having stepped away from Spain for a few days I will be glad to be back there on Tuesday.

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.

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.