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

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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.

Bowel Cancer Chemo – Blog 60

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Part one of the new Chemo cycle targeting the Bowel Cancer has started with a 3 hour session in Xativa Hospital. Dad was put on an intravenous solution to kick start this new phase. It also gave him chance to reconnect with the countless number of nurses/girlfriends he has gained during his time attending all his various appointments.

He has also now been prescribed part 2 of the Chemo treatment which is Capecitabina – a tablet to be taken orally, twice a day, for the next 14 days.

As expected the standard list of side effects that could occur during this round of Chemo is quite lengthy:

Stomach pain or upset stomach, Constipation, Loss of appetite, Changes in the ability to perceive the flavours of food, Increased thirst, Unusual tiredness or weakness, Dizziness, Headache, Hair loss, Rash, Back, joint or muscle pain, Redness, swelling, itching or tearing of the eyes, Difficulty sleeping or staying asleep.

The Serious side effects that we need to keep an eye out for though are as follows:

Diarrhoea, Sickness, Vomiting, Sores in the mouth, Swelling, pain, redness, or scaling of the skin on the palms of the hands or soles of the feet, Fever, chills, sore throat or other signs of infection, Swelling of the hands, feet, ankles, or lower legs, Pain or tightness in the chest, Fast heartbeat, Dark urine, Yellowing of the skin or eyes.

The Oncologist is going to see Dad on a weekly basis to ensure that he is coping okay with this cycle of Chemo. She is highly concerned of the side effects that could occur for Dad and wants to ensure that the treatment is the right choice at this late stage. She did give the option to postpone it this morning as Dad was feeling a little worse for wear and very tired.

It is touch and go if this cycle of Chemo will do anything other than upset the balances of Dad’s other organs which have currently stabilised. The Capecitabina tablets can cause complications for patients that have current issues with their liver, kidneys and heart. The fact that Dad has liver metastases, fluid round his heart and had kidney failure over Christmas are all areas of concern that the hospital must keep a close eye on. Salt levels are also going to be at risk if diarrhoea occurs due to the fact this will flush out liquid intake which in turn will flush out all the sodium causing even more complications for the kidneys.

The counter argument of this is that he is barely now eating anything anyway. So, in some respects this is helping as the less he takes in the less he needs to process through his body. To better understand what he was up against we have asked if surgery was possible in order to remove the tumour in his bowel. This would have meant Dad having a Colostomy Bag, which is something he doesn’t really like the thought of but we wanted to know anyway.

Unfortunately, surgery to remove the tumour is not possible. The tumour is big and is inoperable. It is also the reason he cannot toilet properly. It’s not just that he isn’t eating, the tumour is so big that the colon is almost fully blocked. As a result, should he start being sick and not toileting at all, then he will end up having a Colostomy Bag whether he likes it or not, despite the fact the tumour will remain in his Colon.

Both Dad & Mum are understandably concerned with regards to the lack of eating and the Oncologist has said that it is not a problem. Her words were basically that whilst not eating will cause him to die, he will die anyway. This was done in a pleasant and tactful way though the answer is only what we already knew.

This coming Wednesday we will see the Oncologist for a follow up review; Dad will have his blood tests done and this will give them the chance to decide whether the treatment should continue or not.

On Thursday, Dad will then have a biopsy done on his liver. This will be a full day appointment with careful monitoring needed throughout the day. He will be put on an intravenous drip in order to administer medication if required and will be on bed rest, after the biopsy, within the oncology department for between 2-6 hours.

Should Chemo work and not impact Dad’s quality of life too drastically then the cycle is repeated every 3 weeks. (The next one being 10th March).

Should Dad not be strong enough then his options are limited. It’s highly likely a Colostomy Bag will be fitted and he will then be in the realm of the palliative care team to ensure he is as pain free as possible until the end.

Despite Dad being shattered, feeling ‘wuzzy’ and a little worse for wear, we did still head out today for a walk around a nearby lake. Dad wanted to and so this should be taken as an encouraging sign. I have to admit, he doesn’t look half bad either. Well, not half bad in this picture.

 

Carrots & Love: Part 2 – Blog 59

fight

Following immediately on from last night’s blog, I feel it’s only right to provide an update despite it being less than 24 hours.

Today we attended the hospital for the planned Scan to assess just what was going on in Dad’s bowel. The appointment lasted just 30 minutes and we were then asked to see the Oncologist later in the afternoon for the results.

The news unfortunately is not what we had hoped. Whilst we expected that fluid around the heart would cause the next complication and halt the Immunotherapy treatment, this was not the case.

Instead, Dad today was dealt with the blow that, as originally feared, they have discovered a new tumour in his bowel. The Bowel Cancer has grown quickly and is now to be the main focus of any future treatment efforts.

This said, Dad will also need to have a biopsy performed next week on his liver due to the cancer also causing more concern in this area. The cancer had already spread into his liver so this is nothing new but sadly it appears this side of things has also gradually got worse.

Immunotherapy is no longer an option for Dad. The Immunotherapy is designed to work with the protein found in the Lung Cancer. The Bowel Cancer does not contain this protein and treatment must now be focused on the bowel and not the lungs.

Seeing Dad’s reaction to the news was gutting. Watching someone you love be dealt the cruellest of blows when the finishing post was within spitting distance was awful. His colour vanished immediately and the realisation that he was being pushed down the road of no return quickly dawned on him. The dangled carrot has effectively been well and truly removed.

The next step for Dad is to start a new round of chemotherapy, a new phase of hope. This is due to start on Friday morning. He will receive the chemotherapy intravenously for 2 hours. He will then be free to go home. The difference this time is that he will then be on chemotherapy pills to be taken at home for 14 days.

Oral pills are known to cause their fair share of side effects though until I know exactly which type he is given, it’s impossible to say. We will know on Friday though the side effects are likely to be nausea, vomiting, diarrhoea, febrile neutropoenia (fever) and peripheral neuropathy (nerve damage).

The Oncologist will also be keeping a close eye on Dad every week, if not more frequently. This will include blood tests and general health checks. They are concerned that the complications we have seen over the last few months, of kidney failure and low sodium levels, could make a comeback. It is not to say that they will, just that extra caution is needed to ensure it’s known exactly how Dad is at each stage of the bowel chemo.

With regards to his pain relief, his doses have also now been increased. This includes the Morphine patches he has to wear, as well as countless other tablets that he is now on. The Actiq lollipops he craves have also been increased in dosage. These should only be taken during severe episodes of onset pain. They almost now seem like sweets to Dad though.

There is no time limit set for how long Dad has left. There are signs, indications and reflections on situations that have occurred that lead us to wonder if its days, weeks or months. At times, we have been given some indications, though nothing concrete can truly ever be stated or relied upon.

Please know that whilst we may struggle at times to deal with the language barrier that the Spanish health system may present, I can confirm with the utter most confidence and assurance that Dad’s care has been second to none. The doctors, nurses, porters, specialists, receptionists, cleaners etc. are all truly wonderful, patient, caring and accepting people. The treatment he has received and continues to receive is incredible; he never goes without. Some of the information can seem overwhelming though this is because we are dealing with something that affects us where it hurts, our hearts.

Today is a major blow. Our job is to now build him back up. He is worried. He is concerned. He is questioning how much fight he has left. He is however open to continued treatment efforts. He is not ready to give up despite naturally at times feeling like the end is in sight.

Whatever happens, do not take today’s news as bad as it may sound. Immunotherapy was a chance of an extended life, with a hope of a cure. Whilst the eligibility has been whisked away from him, the pure fact that he was even possibly going to be able to take part has kept him going. This hope was enough to keep him battling on. This is not the end.

Dad is a fighter. He still is a fighter and still has fight left in him.

xxx

 

 

 

 

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.

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.