More Miracles Achieved and still more needed

 I cannot imagine our first month in Portugal going better than it has. We have been lucky and we have been smart. Yet despite all this success, the month has opened my eyes much further about the challenges still ahead for both me and for my wife as we continue our shared journeys to different destinations.

 

The first week in Portugal almost felt it could have come from the creation story in Genesis. Every day brought fresh major challenges and opportunities to fail and jeopardise our entire project, yet every day we managed to step up to the plate.

 

The primary blessing during our creation week was that I felt so well. Indeed I still feel very well nearly a month later, perhaps even a bit better each day. If I had been a burden during that time then even my splendid wife might have buckled under the strain. As it turned out, we were quite an effective team and equipped to benefit from the good luck that perhaps a higher power chose to gift us that week.

 

On the seventh day God rested, and I wonder if we will also look back on our first Sunday as the most significant day of that frenzied week. For it was on the Sunday, thanks to a kind a diligent contact, that we discovered the church community that should serve us well in Portugal. The church is a drive of three quarters of an hour, one of so many burdens I impose on my wife, and is Anglican rather than Catholic, but the community is surprisingly vibrant, the location wonderful, and the service gratifyingly spiritual. Their choir is also quite active and well-led so Genesis Sunday also re-started our choral singing.

 

During that first service I could not prevent my mind from wandering forwards in time. Despite having so long to plan our move, how is it that I had completely overlooked so many key aspects? Of course I need a place to die and be cremated that will be suitable for others to gather, even if I have no pretensions of grandiose funerals accompanied by choruses from the Duruflé requiem. My emotions swung in waves between fear and dread, worry and pity for my wife, and the potential for peace. Since then, the emotional balance has gradually become healthier. What a large step forward Genesis Sunday gave us.

 

My emotional burden has continued to ease as we head to the conclusion of our first month in Portugal. By now I suppose we are well into the Pentateuch, yet our luck continues to hold. We have managed to balance more successful administration with starting to relax and enjoy ourselves. It has helped that our younger daughter has visited us not just once but twice already, for she can help both practically and emotionally. We have enjoyed many long walks by the beach already, and rediscovered some of our favourite Algarvian restaurants. We have greeted other relatives and friends, some established and some new. We have even discovered what seems like a very suitable community choir to enjoy together.

 

All the way through this month, the potential for disaster has lurked but somehow been averted. How I have stayed so well has felt like one miracle. The opportunities for being denied entry owing to some non-compliance or error, a calamitous breakage, a fall, a major setback to the renovations, a refusal or deferral of medical treatment or revelation of inadequate competence to meet our needs, something failing at the bank or the car showroom, all of these were events of high jeopardy that somehow worked out in our favour. And now we are surely past the worst and can approach what remains without so much dread.

 

Despite these successes and the peace they are gradually helping to build, of course the fundamentals of our situation have not changed. I have had several weeks of wonderful health, but Dr Mellinghoff was clear that we should be ready for more episodes and permanent unwelcome changes, perhaps quite soon. I suspect that he may have been even more open with my wife.

 

We have made our choices and for me I am grateful that we made the choices we did. I am confident that I will be able to deal with my own future. For my wife I hope it turns out the same, but, prepared though I thought I was, I am not sure that I was fully attuned to the scale of change that our choices will impose on her over the coming months and years.

 

It is worth remembering once again the old adage about the three toughest changes commonly faced during a lifetime. They are dealing with a death or divorce, dealing with a major change in employment and dealing with a change in place to live, especially one involving long distances and multiple continents. My wife is already facing up to each of these three changes, in as stark an environment as could be imagined. Caring for a terminally ill husband and what follows, retirement from a gratifying job, and moving across the world to a place where she has few roots: each of these three challenges are monumental. I pray more than ever that we have as much time, and especially as much healthy time, as possible to give her the best chance to prepare and face up to this cocktail of challenges. The social aspects of this are as important as the technical ones. Giving up work, attractive but leaving gaps in everyday life, may be one of the toughest parts.

 

So far she has been magnificent. Challenge can bring out the best in us. An example is driving a car. It is now nearly two years since I could not safely drive any distance. During that time my wife’s driving has progressed from tentative to confident so that she is now a very effective road warrior. Practice makes perfect. The same is true for some other life skills, especially those ones which I formerly dominated in our marriage such as managing the finances. Sometimes it is not easy to give these things up, and I do become frustrated and interfere on occasion. I suppose my own burden is not trivial either.

 

As usual we know where to find solace. Some fear can be healthy and we do well to accept and embrace it. Prayer is helping us more than I ever previously imagined. The companionship of friends and family is a wonderful comfort. And we have as much to be grateful for as ever before. As we start to settle into a more relaxed routine, hopefully in reasonable health, thankfulness can permeate all we think and all we do. 

Torrents of Emotion

  

This week we finally achieved a dream I have had for nineteen years, when we touched down in Faro after a short stopover in The Azores. Faro duly had its usual uplifting effect, and my mood lifted immediately. Since then, thanks mainly to my wife, we have achieved minor miracles. Yet of course it is hard to feel wholly euphoric given the context of my disease and constant thoughts about how long we may have together and in what state of health.

 

The project to move from New York may have been the most demanding I have ever participated in, including work projects. This may well have been true even cancer-free. My wife had to close out her work. We had items for sale, gift, disposal and shipment, and arrangements for the shipment were far from simple. Many friends earned and repaid our attention. During the last week came the bulk of the sorting, but we also had a car to sell, a cat the transport and plenty of other paperwork. As the week progressed, we both became progressively more exhausted, and I knew I was not wholly reliable, likely to lose or break mission critical items. I also found myself obsessing over particular details, of which some did not warrant that attention. I was on moderate steroids, so peace was in short supply throughout the week.

 

With copious help, somehow we made it, and the tally of regretful lost items was much smaller than it might have been. We were not quite ready to arrive to a building site, but I suppose it was us who tried to expedite the villa improvements and the contractors had done lots of work.

 

Our goal was to arrive and then immediately slow to retirement pace, but that was never going to be feasible since many critical items in Portugal required immediate attention from whatever energy we could find. Luckily I have enjoyed my healthiest week since the summer so I might have even been a net asset rather than a total liability.

 

The first minor miracle was that immigration arranged an appointment to see me on a date which turned out to be our first in Portugal. We had been applying for months and expected many more delays, complicating all sorts of other administration and maybe costing us money and other opportunities. A kind lawyer chose to drive from Lisbon to accompany us and she made sure that everything went smoothly. That was a big box ticked with a lot of happenstance. We also made progress with our bank.

 

On day two we embarked on two other projects, buying mobile phones and shopping for a car. These may seem reckless so soon after arrival, but hire car costs would mount quickly and working smartphones are rather essential to life nowadays. We made progress in both quests.

 

On Wednesday we turned our attention to medical matters. Our oncologist appointment had been deferred until next Tuesday so we felt we had to make a start beforehand. A couple of my meds had been lost in the packing and Tuesday seemed a long time to wait for them, even if nothing else went wrong before.

 

Our experience showed up some differences between the US and Europe. We managed to find a social health centre, in a place physically reminiscent of the DMV or Jamaica public sector offices, but the service was outstanding. Everyone was happy to talk in English despite the technical content. My wife was immediately given a health service number and will be allocated a primary care doctor within a few days, and I will receive the same once the immigration is finished. There was a publicly funded doctor on hand to give me an appointment within two hours. I had to pay full cost, but 31 euros felt very affordable, and even more so when the meds that they happily prescribed cost only six euros for a year’s supply. We were so chuffed that we went back to the car dealer and closed a deal before the end of the day, and meanwhile we had finished unpacking what we brought and had reached a manageable position for the building project.

 

On day four we had to close out insurance, payment, paperwork and delivery of the car, and our dealer, not from a profession I generally admire, turned out to be very helpful and not just out for quick profit. Then we turned our attention back to the phones. They are in our hands but we have some self-training to complete. Tomorrow we return our hire car, and on Saturday morning we hope to secure a good TV package. Not bad for one week! But we are in a state of perpetual exhaustion.

 

It is hard to maintain any overview of the big picture amidst such chaos.

 

 Fortunately we can surely slow down next week to regain some perspective and a little peace. We cannot retain this level of emotion, though of course emotion is an outcome not a choice so we cannot be certain. During the last two weeks we have both witnessed elation, pride, intense love and extreme thankfulness, but at times also something close to despair, being overwhelmed and out of control, intense fear and something like foreboding. Perhaps it is just as well that we have not had time to reflect. Under this sort of pressure, it probably pays to stay practical and in the moment.

 

Still, once we can focus on the bigger picture we will surely find something very nuanced. We have indeed accomplished a dream in making it here and the opportunities for a wonderful life feel wonderful, together and surrounded by friends and family and new acquaintances and activities. The food is pretty good too.

 

The other side of the context will be something we have to embrace more and more. The cancer feels likely to accelerate very soon, though of course we could be lucky and be given a further extended period of grace. We just have to be as prepared as we can be and remember to be thankful for what we have had, what we still have, and what we can continue to look forward to. In this new phase we will develop new mantras and strategies, remain hopeful and positive, and accept whatever may come as gracefully as we can.

 

One new mantra will surely involve peace. The last two weeks has not offered the most propitious start for that. But it feels that we are in the ideal place for the emotional torrent to recede quickly. It already has. 

Farewell to New York

Our one-way tickets to Portugal are booked for October 19^th , just ten days away. There have been periods, especially since my cancer diagnosis, when we had many doubts about fulfilling our dream to live at our Algarve home, and even a few times when one or both of us became unsure that we really wanted that outcome. But, barring unlikely disasters in the coming days, we really are going to make it. How healthy I will be for how long remains far from certain, but we are generally determined to enjoy whatever time we have, always feeling grateful for the opportunities we have been given.

 

So, God willing, my next and subsequent posts will be created in Portugal. That means it is timely to reflect on the twelve years we have lived in New York. Overall, they have been good times for us.

 

I confess to having become quite jaundiced about th e state of US society in recent years. If I am asked about what I will miss, I happily list friends and family and my special Sunday mornings at St Josephs but the list ends there. A refrain of mine is to bewail how broken is US society in so many ways. Looking at all the most important indicators, from healthy life expectancy to happiness or road traffic deaths, the US has fallen from a world leader to a rich world laggard over the course of my lifetime. Yet none of these indictors even warrants a mention in what passes for political discourse.

 

Most Americans concur with my narrative about a broken country. But mot of those same Americans would still defend the narrative about the USA being the greatest country in the world. I can only think of one metric where that is clearly true, that being military might. But any analysis of how that mjght has been deployed since 1945 would reveal a litany of failure and devastation. And still countries are declared enemy combatants with little justification and huge consequences for everyone’s prosperity. \

 

Lexington is a reliably strong page in The Economist. Every so often columnists are rotated and I recall one farwell article. The first paragraph extolled America and following paragrapghs sought examples of America’s attraction. Every example brought out aspects where humanity had yet to do damage. The nature, abundance and fertility of land, and potential of America is unique in the world. Yet whenever humans muscle in this potential is sacrificed.

 

During our first summer here, we visited some lovely places including Lake George and Fire Island. I both cases, we tried to go for a stroll once we had settled in. But our walks were curtailed almost immediately by notices telling us that the land was private and out of bounds to casual visitors. What a waste!

 

Like departing Lexington, I started this piece with the aim of praising America, but found myself diverted into darker territory. I will try to restore some balance in the rest of this piece.

 

New York has been good for my family. My wife has thrived at work. We arrived with two timid pre-teens, yet each has developed into an impressive young adult. I invested heavily into my singing hobby and my effort was repaid many times over. Culture is often excellent in NYC.

 

America also does sports very well, once you get past the annoyance of domestic eventsbeing mis-cast as a world championships. We have had great days and nights enjoying live sports events. In our last weeks here we have enjoyed yet one more lovely night at the open tennis, I have added two more Broadway plays to my resumé, and I even got to sing the national anthem with a choir at Yankee stadium. I even think I got most of the words right, not a simple feat.

 

Inevitably, the final two years of our New York memories will be clouded by my cancer diagnosis. Right on cue, things took a turn for the worse in recent days. Yesterday we were offered a tough choice of whether to have one more operation. The left side tumours are well-suppressed at the moment, but the right side is growing. With heavy hearts, we agreed that an operation now would be too risky and burdensome, so in some respect we are accepting that the cancer will take its path. Until now, steroids and other treatments have kep episodes and the most unpleasant symptoms under control, but that is likely to become progressively more difficult in the coming months.

 

The USA may be broken, but it has as many good people as anywhere else, and it has been our privilege to meet, work with, admire and build friendships with many New Yorkers. Especially in the last two years, we have experienced deep wells of love and support, of friendship and hope. It all makes a difference, and we are so grateful for all of it. People are good. Americans are good. New Yorkers are good. My wife and I, and both our younger kids and our US based family, have been beneficiaries.

 

For us it feels the right time to leave this continent and to seek a more peaceful and comfortable life in Portugal, filling our last days together, whether few or many, with love, prayer and hope. We wish this country and indeed this continent, the strength to utilise more of its abundant potential. I will try hard to see more of the strengths and less of the brokenness from our new vantage point. I do feel that we are going home, after a prolonged and enjoyable adventure. Home is where the heart is. But we are grateful for the adventure and for everything it has offered our family. Fare thee well, great city and great country. Just go easy please on the ludicrous bragging about being the greatest.        

Happy

 One of my favourite jokes is about happiness. True to my love of dark British humour, the joke itself is not a happy one. It comes from the peerless TV show Fawlty Towers, and involves a conversation between Basil and Sybil.

 

Locked into a desolate marriage, the pair live their lives as separately as possible, Basil especially filled with bitterness, shame and resentment. On the occasion for this joke, things at the hotel have been going unusually well, and Sybil takes a risk by talking to Basil, a rare occurrence and one she will usually regret. She asks how he is feeling, and he replies neutrally. Sybil persists: ‘but are you happy, Basil?” “Happy?” “Ah, happy”, comes his reply. “I remember happy”. The depth of despair in this interchange is truly brilliant.

 

The joke came to my mind this week for a lovely reason. I discovered this week that, once again, I am happy myself. That is the first time I have been able to say that since our Europe trip in June. I was happy for that whole month, but then not since, until now.

 

It is hard to be happy, in more than a fleeting sense, if we do not feel fully well. I have experienced this issue many times, but especially during the last three months. Ever since picking up Covid on the flight home from Europe, I have not been fully well. The last months have involved an operation, many scans and treatments, and lots of side effects. Sometimes these have been severe and disabling, and always there has been a lingering sense of fear that things could be about to get worse or become permanently disabling. The fear is the toughest thing to get past. It is only now, with all symptoms back to where they were before the summer, that the fear has lifted. For the last two weeks my only issue has been the side effects from steroids, but that inhibited sleep and affected my mood. Only now, with steroids tapered towards zero has the door opened for happiness.

 

With the opportunity for happiness returning, I have been fortunate to have encountered several positive happiness triggers over the last couple of weeks. Perhaps the turning point when I fortuitously got my laptop back after the incident with hot tea. It is strange how helpless I felt without my laptop, and how its restoration pepped me up.

 

Next, I can swim again, now that eight weeks has passed since the most recent operation. Even better, the steam room at my local pool has been functioning properly for a change, so I can reward myself with a lovely steam after the exertion of swimming. But the main benefit of swimming has been the realisation that I can do it without negative consequences. On the subject of exercise, I am also delighted to discover that I can enjoy walking again. On Saturday I estimate that I walked for over ten kilometres, and only felt good afterwards. This week I also went to a Broadway play. Even though the play turned out to be a disappointment, that was one more experience to help me feel happy.

 

Positive self-assessment lies behind other triggers for happiness. While experiencing side effects from radiation, I was worried about my short-term memory. Memory issues were flagged as a common side effect, and I was warned that some of these could be permanent. So I have not been able to resist testing myself, especially when I wake up (which has been several times each night while I have been on steroids). Initially my results were inconclusive. I sometimes struggled remembering names, though I was not sure if that was a new or worsening phenomenon or simply something that had been true for months or years. But, once the other happiness triggers were in place, I realised that my memory was absolutely fine, as far as I could tell.

 

Another trigger was realising that my eyesight was improving again. I believe that eyesight issues had a lot to do with my episodes of disorientation during August. Into September there were certainly residual problems with lack of focus and blurriness. But these have gone now. Perhaps my hearing is restored too. It is certainly more comfortable wearing my hearing aids than it was a month ago. I find also that I can do some tough puzzles again on my laptop, another boost for confidence. Beforehand, either brain or eyesight issues made that infeasible. The burst of energy that came from completing one puzzle successfully was lovely.

 

I do miss singing in choirs, but that has led me to appreciate more the opportunities to sing that remain. Cantoring at mass at our local church or at the home where we volunteer has never given me more pleasure.

 

All these triggers for happiness seem to have been piling up over the last couple of weeks. But the biggest trigger of all is abundantly clear. We have booked our tickets to move to Portugal! In just four short weeks, all being well, we will be waking in Portugal each morning and savouring the peace, comfort and love that our home there has to offer. After a few false starts and delays, and after recent fears, it is such a relief to be so close to finally moving, and perhaps we can be lucky enough to still have an extended period of good health to look forward to there.

 

It feels wonderful to know that, once again, I am happy. I understand more fully now how tough it is to feel happy while suffering even mild discomfort, and, especially, when feeling fear about how symptoms might develop. But the fear has now passed for the time being, and that has created space for good people and good fortune, and even some smart moves by me.

 

Are there lessons to be learned here? I am not sure. I suppose a good goal might be find happiness even when not feeling 100%. That is tough. But perhaps we can achieve it. A key might be moving past fear. As the illness develops, I have to expect periods of discomfort, and ultimately permanent discomfort. Does that make happiness impossible? Perhaps it does, but maybe not if we can move beyond fear. That feels like a desirable goal. It feels like it will be easier to achieve in Portugal than here in the US, but I suppose we will have to discover that ourselves when the time comes. For now, I am happy once again, and feel very thankful for that.  

Good People

 I don’t believe I have suffered a day of extreme anxiety or depression in my whole life. That makes me feel blessed. Since my diagnosis I have met many medical professionals, and a lot of them have an interview sheet they must go through. Do I ever feel depressed or hopeless? Do I ever contemplate self- harm or have suicidal thoughts? I have never felt the need to pause before answering all these questions in the negative.

 

I suppose the situation may change as my illness develops and it is never smart to rule things out. And last week, with all its symptoms and misfortunes, turned into a test of my resolve. I was certainly low for a few days, brought down by physical and emotional woes. But I have emerged from that low point now and feel almost fully restored. For that, I have many people to thank, starting with my wife and family but including many folk I know much less well and who have fewer reasons to have supported me. People are good.

 

I am not beating myself up for getting a bit more miserable than was healthy for me, for plenty of things went wrong, all at once. It is not at all easy to discover almost overnight that the whole left side of my body had become largely useless, and the frustration from not being able to carry out simple tasks was horrible. I was dropping things everywhere and needed help with everything. I, rightly, had to sacrifice my singing, and that felt like a decisive moment.

 

And, as always happens when we are vulnerable, misfortunes piled upon misfortunes. The car decided that it was the ideal time to present us with an unwelcome large bill. And then I succeeded in pouring hot water all over my laptop, rendering the keyboard and touch pad useless. A bit of depression is understandable, surely?

 

Still, I came through it and out of the other side, and it feels worthwhile to analyse what made the difference, in case the issue might resurface at some point. Surely the main factor was a positive development in my physical health. Dear steroids, I hate you but I love you too, and you gave me my left side back, together with all manner of everyday necessary competences. So the medical professionals are owed thanks, though not as much as my wife, who stayed calm and supportive even when the steroids were making me tough company. Thank you, my darling.

 

But stories often revolve around more than grand heroes. I have always marvelled at how good nearly everybody is, and this period contains some lovely examples. Trust in people and they will repay you. Most of us are just trying to make this strange world a slightly better place for everyone living in it.

 

Friends and family played a vital role. My sister has always been a positive influence through my illness and it feels good to have her in the team. The same is true of all our children and many in our wider families. I am fortunate that I have healthy relationships with everyone I know well.

 

But then there are other friends. People queued up to come and visit me when I needed company. A musician friend continued to give me his valuable time when I needed distraction. Others dropped in just to chat, even if I was a steroid-crazed man at the time. It feels good to have this support, and it will be important to build up such a network once we reach Portugal next month, a network that we can help as well as to rely on when we need help ourselves.

 

But my idea for this posting is to focus on other heroes. The lady who runs the car shop that we use is a true saint. Working in a rough, male-dominated field full of unscrupulous greedy operators, she is a wonder. She has always given us honest advice with our own interests at heart. Her life has had its own tragedies, yet she maintained her integrity and I am thrilled to see how she has built up a successful business. Somehow I came through the ordeal of paying up lots of money for a necessary repair feeling better rather than worse. That would not happen at many car shops.

 

Then there was the computer. First I took it to some kids on the high street, who were condescending and plainly only interested in fleecing me for as much as they could get. Luckily I saw through that, but I was resigned to another big bill and living without vital files for a while.

 

Then I started meeting good people. The next morning I just about had the energy to make it to Costco, and walked right up to an Indian guy giving computer advice, again with my interests at heart. I learned that burying the keyboard in rice might bring it back to life, and perhaps the pad too if I gave it a bit longer. And I heard honesty and possible alternative plans, including a particular Apple store that specialises in repairs. I felt better already.

 

The following morning I had my keyboard back, and ventured to the local Apple store. Apple are pretty mercenary so I was not optimistic. But once again I struck gold.

 

This time my saviour was an agent in her sixties who continued to work part-time for Apple after her retirement. She was probably the only person in the whole store who could speak my language and actually wanted too. We talked through the chances of the pad resurrecting itself (low) and moved onto other fixes. I could buy a pad, and it would bne affordable and give me my computer life back straight away.

 

The lady had another trick up her sleeve, which was to find her pet technician, probably the only technician there who could speak her language, leave alone mine. Quickly they teamed up and sorted me out, and, better, I felt valued rather than bitter or humiliated, which I am sure would have been the case had I stumbled upon other staff members. Of all the happy turning points restoring my spirit, having my computer back might have been most influential. And normal good people lay behind this minor miracle. Well done Apple for an enlightened employment policy.

 

I could mention other heroes. This week has seen a series of heartening events. Bad things pile up in clusters, but good ones do too, and I have been a major beneficiary this week. People are good, and good people are doing good things all the time. The bonus is that, usually, those people feel good themselves. There is nothing more restorative than helping somebody. I needed help, and found it in abundance, from both familiar and unlikely places.

Sanity and Hope Restored

 Sanity and Hope Restored

 

This has been a tough week, perhaps the toughest since the initial weeks following the discovery of the tumour. We have struggled emotionally. Thankfully our wonderful oncologist and his splendid nurse practitioner were able to restore our morale earlier this week. We cannot be sure, but there is a good chance that the immediate slope from here can be an upward one.

 

Three weeks of radiation therapy finished this week, while the chemotherapy should also be doing important things inside my body, even if I don’t notice anything. The side effects from both treatments have been milder than before, with mimimal nausea and only some loss of appetite to handle. After a couple of weeks my hair started coming out, neither unexpected nor unwelcome. It was all going quite smoothly.

Then last Thursday a new symptom appeared and quickly become quite serious. It started with numbness in my left hand but soon spread to all of my left side. It felt like I had transitioned from a fully functional human being into a dependent invalid within a few short days. There was no quality feeling on my left side, so my movement was unsteady and prone to falls, though I managed to avoid any, somehow. The worst part was that the simplest of tasks involving some input from my left side became very hard. I could not dress myself, could not trust myself with an object such as a sharp knife, was tottering around the apartment and needed help at the toilet.

 

I expect it is hard to imagine just how humiliating, shaming and especially frustrating this become. I was not comfortable but could not safely move. My wife was wonderful helping, but her specific skills did not really cover the situation and I took some of my own frustrations out on her.

 

On Saturday evening I managed to cantor mass, somehow, despite needing help on stairs and having to secure myself whenever standing. Then Sunday mass with my professional group was even tough, a possible fall lurking behind every maneuver. Later that day I received the kindest firing letter ever, and it was a relief; I had no wish to embarrass myself and others through that experience again.

 

Through the weekend the condition continued to worsen. We adapted well together and avoided disasters, but then our minds took over. Was this permanent? Would it get even worse? If so, could I be left safely alone? Will be forced to rethink all of our plans? Was this the beginning of the end?

My Monday radiation was in the morning for a welcome change, and afterwards they wisely held me back to see a nurse. That started a process which led to taking steroids, and noticed a slight improvement.

 

Nonetheless we attended our regular oncology consultation on Tuesday morning in a state of high anxiety, both consumed by negative scenarios flooding our heads.

 

We were making the oldest mistake in the book, though of course it is very hard to avoid under such emotional pressure. We had been told clearly to expect a wide range of temporary, and a few permanent, side-effects from radiation, yet by Tuesday we had almost ruled that out as an explanation for my left sided weakness.

 

Fortunately, the nurse practitioner started to put us right, and the neuro-oncologist finished the job. It seems that a side effect of one sided weakness is quite  common during radiation, and, even better, a short regime of moderate steroids would probably sort out the problem. That was the moment we started to be able to escape the doom loop and to restore sanity and hope. And, sure enough, while there have been more bumps in the road, we can smile again and hug again and feel optimistic again.

 

I suppose the big question is why we have to make the mistake of entering the irrational doom loop? Can we aoid that next time? Perhaps marginally, but I doubt much more than that? Why not, since it so obvious? Because we are human beings.

 

Another universal, sods law, had more to say as the week progressed. First we had to pay a large bill for the car. Aaaaaaaat least our car mechanic is a saint. The, on Wednesday, I did my thing, as I do most days, of knocking over a cup of hot tea. This time I succeeded in a direct hit on my lap top keyboard and pad area. It is currently sitting in rice and we hope it might resurrect. If not we know exactly where to go next. It is lucky that our mood was lifting, otherwise that incident could have thrown us back onto the floor.

 

Last night we had a lovely meal out with close friends and that restored our sprits further. My appetite is now being bombarded by two opposing forces, and the steroids are starting to win, so I could enjoy my French meal extravagantly. Hope is never far away, after all. And kindness and thankfulness unlock it.

 

Are there any lessons from this week of challenge and its aftermath. Trying to avoid doom loops must be one. Being ready to ask for help when you need it is another. Accept the steroids with grace when you need them is a third (though I am sure we will be advocating a taper very soon).Another lesson: if you are warned of multifarious temporary and permanent side effects, then don’t leap to the conclusion that a symptom is certainly a side-effect, nor a conclusion that it certainly is not

Simpler, clearer, better - but also new needs of acceptance

 Simpler, Clearer, Better – but also requiring Acceptance

 

Seven short weeks ago we were in Portugal, enjoying a relaxing and peaceful time with blissful walks and lovely meals. We still had the lovely weekend in Brighton ahead of us, a time for singing and family. After that we returned to New York. Since then, much has happened.

 

We suspected we were returning to face a period of uncertainty, after my scans had taken a worrying turn during the spring. As it turned out, July would include an operation, four more scans, many other tests, long phone discussions with experts, and even a day trip to Boston to consult a different brain cancer guru. The whole month felt like a change of pace, including more urgency and packed with uncertainty, but behind it all lay the need to accept a change in my situation. Barring an unlikely miracle, our dreams of a long respite would have to be shelved. Now, the cancer was winning, its effects were creeping closer, and perhaps the best we could hope for was to hold it at bay for a while longer.

 

Inevitably, we found several aspects of our July experience quite tough. Each scan result or consultation required some time to process and forced us to come to terms with a new reality. We were incredibly lucky to have so much dedicated effort on our behalf from such impressive experts, and their candour was also welcome: still, each time we had to come to terms with the implications. There was an operation to recover from, and that involved further intake of steroids, which as usual adversely affected how I behaved with my wife, inflicting additional strain on both of us.

 

Also, while information was always welcome, the path forward remained uncertain. The experts made it clear that in this phase of response to cancer, patient input became more important. This was a clear message to us, and something else that required processing together. Choices would mean trade-offs. Eventually those trade-offs would becoming difficult, such as deciding how much we valued a prolonged life when that life might be painful and put strain on carers. We would need to face those choices together, while their impact on each of us could be very different.

 

Some relief became available at the end of the month. Firstly, my daughter arrived for a visit of a week, 32 weeks pregnant. The three of us had precious times together. Around the same time, all of the medical inputs somehow converged into a clear plan of action, and much of the uncertainty lifted, at least for a time. The window for surgery was probably closing, unless for a very specific purpose such as draining a new infection. Medical trials remain possible, but unlikely and with very uncertain value, and that window would close quickly too.

 

However, new treatments were available and potentially valuable. A specific fifteen-day course of radiation therapy, combined with cycles of a different oral chemotherapy, seemed to make sense. We could keep an immunotherapy, and maybe even a trial, up our sleeve.

 

This burst of simple clarity was very welcome, even though it required yet more acceptance of a reality without much major upside. I duly started the two new courses during last week. So far neither have resulted in the side effects I have become familiar with: I have experienced no itchy rash and almost no nausea either.

 

Even so, fate dealt us a new dose of reality at the end of last week. On Friday afternoon I suffered an extended bout of disorientation. I was at times confused, found it hard to locate and read signs, and lost some dexterity. Fortunately, my wife was with me for the entire episode, which may well have saved me from falls or other serious mishaps.

 

This new development is clearly of concern. At least it passed and has shown no sign yet of returning. It might have been a reaction to a specific circumstance, such as the new treatments. The symptoms had similarities to seizure activity, which is something I can protect against through medication.

 

As always, there is much to celebrate and be thankful for. Memories of June and family visits are fresh and comforting. The resolution of the phase of uncertainty into a clear treatment plan is a relief, and that treatment has been easy to tolerate so far. I can still read, and write, and sing, and pray, and much else besides. We have reconnected with our old-folks home. The episode, scary though it is, did not cause catastrophic damage.

 

Perhaps most comforting to me, the new clarity has made another choice more clear-cut. It has reinforced my desire to relocate to Europe, and soon. This choice perhaps carries a few medical risks, and is certainly tougher for my wife than it is for me, since for her the consequences will take more time to emerge and then will linger for a long time. Our shared parallel journeys to different destinations come into ever sharper focus. Thankfully, the last month, with uncertainty resolved, has helped us to reach new levels of acceptance and readiness.