The chemotherapy is over

Arguing for the last

For all intents and purposes, I was resolute to have today be the last meeting with the oncologist with respect to my planned eighth chemotherapy treatment.

As I had stated before in my blog last week after meeting with my treatment consultant the fact that more chemotherapy had been scheduled beyond the 1st of March was not something I was ready to contemplate or prepared for in any way.

It was supposed to be all change from the 8th of March, signifying my freedom from chemotherapy and my readiness in however small a way or possibly better to seek employment and begin to rebuild my life.

The case made

Thankfully, my treatment consultant met with both the oncologist and the head of the oncology department about his concerns that the improvement of my immune system was being impeding by the chemotherapy and his view that chemotherapy should stop soon enough to begin to see improvements in my immunity.

The oncologists concurred and at my appointment today which was to presage the last agreed treatments they agreed that by the 4th chemotherapy I had already had magnificent response and healing and the other 3 after had simply bolstered that improvement.

The points accepted

So, they were satisfied that after 7 chemotherapy treatments there was now no need for the 8th which had been scheduled for the 1st of March and it was better to give my immune system the chance to recover so as to prevent my succumbing to opportunistic infections.

Before this, I had wondered if I could go on chemotherapy with a cold that was accompanied with violent sneezing and the occasional cough, there was some uncertainty and trepidation but this was such unexpected news.

All the blood test results had returned and everything seemed to be fine apart from the indicators for immunity which were just too low, the next meeting with my treatment consultant in May after new blood tests in early May should hopefully show the necessary improvements allowing for some changes to the drug regime I am still under.

Moisturising the pain

The oncologist was also of the view that I could further reduce my pain management medication and be weaned off it over the next week or so.

The special moisturising cream was prescribed and I was offered words of encouragement as he commended my bravery through the treatment and all the other issues that entailed.

He appreciated that for 5 months my life had revolved around a 21-day cycle of treatment, incapacity, recovery, expectation, analysis and back to treatment again without the opportunity to breakout especially to the challenging issues of seeking work in the light of mounting bills and threats.

Other things for worry

The newest threat today was the least of my concerns, as a traveller I had an iris identification card which should have been renewed since October that I ignored because I was in no fit state to travel talk less of having the means to travel, now the debt collectors are on my tail for the subscription – honestly, that is really the least of my problems.

Unfortunately, the ones I owe the least are the ones pursuing me the most, all those bills will all eventually be paid with the damage that has ensued to my credit rating by reason of incapacity and illness – someone somewhere is making good money out of misfortune, that is the way of the money system we live in.

Thank you, all

The good news in all this quagmire of realities and expected changes for good and better is that there is no more chemotherapy to take, not even a maintenance one.

For that, I am grateful to God, to all the experts and nurses who have cared for me, my loving neighbours, my friends from all the different spheres of life who have all supported me with means, goods, services, encouragement, concern and love – all of whom I just cannot thank enough, but still, I say thank you.

To my creditors who have been so reasonable too, reducing the stress that could impede my recovery, thank you too.

I saw the priest, that is another blog.

Thought Picnic: Comparing my encounters with cancer

Comparing cancer treatments

Fifteen years ago, I was on the receiving end of a cancer diagnosis, and it was the first day of treatment with chemotherapy. Everything was predicated on my ability to tolerate the gruelling onslaught on my body that was eventually delivered every third week on a Monday for seven sessions.

By comparison, between chemotherapy then and radiotherapy today, the latter seems more tolerable though, just as exacting on your body. Chemotherapy was then necessary because, besides the obvious cancer lesions on one sole and the emanating tumours on the other sole, there was a likelihood that cancer could be in different parts of the body.

Rather than try to determine all the localisations of the cancer, chemotherapy with its cytotoxic ability to kill cancer and some healthy cells in the body seemed the best option against radiotherapy. In the case of prostate cancer, this was still contained and localised with the prostate gland and my options were between prostatectomy or radical radiotherapy, and I opted for the latter.

Effects on the body

In terms of side effects, chemotherapy knocked me out by the beginning of the third day, there was no strength to do anything and that was also exacerbated by the inability to keep food down so I had to be given anti-emetic medication. Within the first five days after chemotherapy, I also had to be careful that no one had any contact with my bodily fluids as it was toxic to healthy people.

I was not prepared for the shock of being cordoned off in my section of the hospital ward and any nurses who needed to draw blood had to take full hazardous materials (HAZMAT) precautions when approaching me. That little piece of detail was not communicated in our pre-treatment briefing.

While I believed I would survive Kaposi’s sarcoma, I do not think I was thinking of fifteen years ahead to reencounter cancer in my prostate gland. During the preview of options for treatment, I did ask if chemotherapy could be a treatment option for the prostate and the view was except in the case of metastasis, it was not a viable option.

Experience or newness

I guess my thinking was having tolerated chemotherapy well before, a second experience would not be as bad. However, it would have left me less able to do the usual things with the need for constant care and monitoring as I had back then in the Netherlands.

I write this not to celebrate cancer but out of gratitude and thankfulness that I have been fortunate to survive cancer and tell stories of the triumph of humanity over adverse events through medical intervention and so much more, the mercy and grace of God.

References

Blog - Waiting for chemo

Blog - A life of cytostatic ostracism

Blog - A primer on cancer and chemotherapy

Chemotherapy as a journey to survival

A body for assault

No two experiences of taking chemotherapy are the same, at least that is what I think from my own situation. As I took my delayed first session of Caelyx chemotherapy (liposomal doxorubicin) on the 5^th of October 2009.

It was scheduled for 9:30 AM but postponed for 3 hours. In that time, I received a brilliant bouquet of flowers from Stockholm which brightened my outlook quite a bit.

I had been informed that I was not going to lose my hair, not that I had any to lose, and my fertility will be affected, not that I was planning to procreate nor was I in the state to make a preservation order on that account.

Taking cancer head-on

When I was wheeled to the oncology theatre, I was canulated and this red liquid in large sachet covered in aluminium foil to shield it from light was passed into my veins for a period of 45 minutes to an hour.

It felt like a homeward straight in my therapy, the fungating tumours of Kapasi’s sarcoma were going to be snuffed out. The chemotherapy being cytostatic, meaning it kills cells and stops cells from growing also meant that I was a health hazard to others who had to be careful about having any contact with any of my bodily fluids including blood.

After the first session, my bed was cordoned off in isolation and that affected me more than the bloated feeling that was a side effect of drug. I was informed of everything I could expect apart from the isolation which was removed after 2 nights.

How it all transpired

I had 7 chemotherapy sessions every third Monday until the 8^th of February 2010. In terms of side effects, it was the loss of taste, the only things I could perceptively taste were yoghurts and cassis black currant drinks. I was literally knocked and without strength for the second and third day, then by the fifth session, I could not keep my food down that I had to be given medication to manage the emesis.

By December, the cancer lesions had disappeared, new pink skin was showing up from under the necrotised skin which needed to be cut away. It is not the best experience, but if it is the only viable course of treatment, you just have to hope you pull through it, for at the same time, a close friend on chemotherapy treated by the same oncologist did not survive his third session of chemotherapy.

Just striving to live

I guess what I learnt through the process was that you were given more of the chemotherapy if you tolerated it well. When I visited the hospital for my out-patient sessions, the ward was well-equipped, the couches were fully adjustable to recline into beds, if so desired. I took my thermos flask of tea, some biscuits, and some reading material.

Apart from the staff, we were a ward of people fighting to live, from the boy who came alone, hardly a teenager to the elderly people, just hoping that the medicine gave us a lot more time than when we first heard the word cancer spoken about our condition.

This blog of reflection is one that also recognises that people with my condition at diagnosis rarely lived for another 10 years. I have been fortunate, and I am grateful for the grace of God on my life, the amazing miracle of medical science, the support of extraordinary friends and now the wonderful love in my life, Brian. I am blessed.

For friends and things we can't forget

A yesterday like today

It feels like yesterday, but it was 10 years ago today, a cold wintry Monday in Amsterdam where I had two things to do. First, it was the funeral of Dick van Galen Last, my dear friend who had passed on 6 days before and then I was booked in for my 7^th session of chemotherapy in the afternoon.

Blog - Seeing Dick Off

The funeral service, which was well attended, vibrant and redolent of the amazingly outgoing personality that Dick was. I then followed the procession to the place of internment but never got to witness the committal to earth as I had to leave for the hospital.

Back to chemo

At the hospital, the cold had in natural preservation conceals all my veins that it was impossible to find a point into which to insert a cannula for my session of chemotherapy. Washing and soaking my hands in warm water could not tease them out. Eventually, the cannula was placed so high up on my arm close to where a phlebotomy would be done.

The 8^th of February 2010 did become more significant as when I when in for the blood test preceding the 8^th session of chemotherapy, I noticed a 10^th session had already been scheduled. My chemotherapy sessions were on a Monday, 21 days apart, however, in the Friday before the next session, I have a blood test to determine the efficacy of the treatment and what further courses should be taken.

My voice considered

I did not know that the more you tolerated chemotherapy; they had a tendency to heap on the sessions rather than reduce them. We had gone from a session to two, then four and now eight. The eighth was to be on the 1^st of March 2010.

On seeing one scheduled after that date, I began a discussion with my consultant. I was hoping to get on with my life after the 1^st of March and I did not think I had the mental capacity to accommodate another session of chemotherapy. At the back of my mind, I remembered a nurse telling me that some patients have endured up to 14 sessions of my kind of chemotherapy.

My consultant listened and opined that he had been thinking about the situation too, my immunity was so shot up, he needed to see it begin to rebuild itself. He promised to have a word with the oncologist. Afterwards, I received notice that my 7^th session of chemotherapy taken on the 8^th of February would be my last. I was in clover.

Life goes on

The prognosis after that was, I needed at least 6 months of recuperation after the ordeal of my treatment. I, however, did not have that luxury. I sent out an email to my LinkedIn contacts explaining my situation. I started work on the 22^nd of March, but the week after seeing how exhausting the activity was, just because of my lack of strength, we agreed that I could have the Wednesdays off.

Yes, it seems like a long time ago, it is one to celebrate for the memories of that time and the passage of time to this day.

It was another year before I returned to St Barbara Cemetery to visit Dick’s grave, for the good friends we’ve lost, there remains more than a memory and a fondness for the times we shared. They are never forgotten.

A primer on cancer and chemotherapy

Knowing more about it all

I have decided to provide a basic primer on cancer and some detail as to what lead to the diagnosis and treatment recommended for me.

This might help you answer some questions and in other cases leave you with even more questions. Please bear with me; I may not be able to address some more personal aspects of the information until a future date.

The important thing is; we know what it is, it can be treated, it is being treated, I am responding to the treatment, I believe I would be completely healed and any support leading to the goal of full recovery from affliction through survival to thriving is well appreciated.

Thank you friends, well-wishers and readers for your understanding. I also appreciate that connections and allusions can be made with the information offered – the cardinal thought and driving credo I have had for a very long time is – I will never live as if I am dying, I do NOT intend to start doing that now. I live to live well.

A primer on cancer and chemotherapy

The beginning

A basic primer on cancer, the cancer I was diagnosed with was Kaposi’s Sarcoma (KS) [1] and there are many variations of it, but due to a pre-existing condition, this manifested first as if it was athlete’s foot [2] and was localised to my toes and my soles.

The regular athlete’s foot treatments that cleared up the infection every summer before did not seem to catch on that I started using foot baths of Dead Sea salts; this aggravated the situation because it softened my skin to the point that lots of it rubbed off and came off allowing for other bacterial infections.

I should have had this checked around this time but a culture of self-medication along with an apparent shyness of doctors did not help – you learn, you change, you live.

Initial ideas and treatments

The infection became deep-seated and painful requiring medical attention and consequently the diagnosis that involves the treatment I am having now. The lesions that appeared under my feet first made them suspect a diabetes-related issue but my blood pressure in my extremities read as normal, that was eliminated along with results from the blood tests and the gathering consensus was KS, which was confirmed after the deep biopsies.

Because of the strong smell coming from the lesions, the infection had a bacterial component which was treated with a number of antibiotics as Metronidazole [3] used to treat fungating tumours but was not entirely effect and Flucloxacillin [4] which is a narrow-spectrum antibiotic.

Whilst these both seemed to reduce the smell and the pain, the lesions which had dried up in a manner under the sole but had become a bit less so under the toes meant a more aggressive course of treatment was needed.

Chemotherapy as a course of treatment

The agreed best course was chemotherapy [5]. Chemotherapy is in the broadest sense the treatment of disease by chemicals. These chemicals may have properties that inhibit the rapid multiplication of cells which is an attribute of cancer as well as work on aspects of the characteristics of cancers, their location in the body and the way it spreads.

The course recommended for me is Liposomal Doxorubicin [6] – liposomal meaning encapsulated in some fatty molecule and Doxorubicin is a very strong antibiotic. What happens is the liposomes allow for a slow release of the disease fighting chemical into the body after intravenous introduction which just takes an hour and this is not fully excreted from the body for up to six days.

This chemotherapy is widely used for many cancers and is very tolerable without most of the side effects associated with other chemotherapy treatments, I am glad about that, but one has been provided with medication against nausea, I prayed about it all.

Sources

[1] Kaposi's sarcoma - Wikipedia, the free encyclopedia

[2] Athlete's foot - Wikipedia, the free encyclopedia

[3] Metronidazole - Wikipedia, the free encyclopedia

[4] Flucloxacillin - Wikipedia, the free encyclopedia

[5] Chemotherapy - Wikipedia, the free encyclopedia

[6] Doxorubicin - Wikipedia, the free encyclopedia

Almost in vain for a vein

Making it to the hospital

I made it to hospital with just 5 minutes to spare, I had checked the public transport route guide to determine how best to get to the hospital in the East of Amsterdam from Saint Barbara Cemetery in the West – interestingly my ideas were quite different from their suggestions which appeared to be better.

As I entered the chemotherapy ward the nurses wondered why I was dressed up to the nines with bowler hat and all. I told them I had just returned from a friend’s funeral, they commiserated and I volunteered that they might even know Dick.

One of the nurses who I did not think I had met before had in fact attended me when I had my very first chemotherapy in my hospital bed on the 5th of October 2009, she said I look so greatly improved and well compared to then – well, you can say that again nurse – I am thankful and grateful to God, my doctors, the nurses, my friends and well-wishers to the way things are today.

More about Dick

They did and they were quite shocked at his death, the main consultant also was shocked and surprised, none could clearly say that his death was impending anyway and one nurse said they still had the newspaper article on Dick which was published on the day he defended his thesis.

For all his affable and amazing life we should not forget that Dick was an intellectual, an academic and was at one time the Chief Librarian of the Netherlands Institute of War Documentation, he was well published and respected in that field, the nurses wondered if I was a historian, well I am not – Dick met with people from all walks of life.

Cold and hiding veins

I settled in one of the reclining seat and made ready to get my chemotherapy infusion but they could not get a vein however hard they tried, in my left hand I had the first prick and the access was not good enough so it had to be taken out.

The nurse suggested I wash my hands in warm water for a while to help the veins show up, I knew it was dreadfully cold outside but I did not know it was 6 under zero – that is cold, I sometime wear another pair leather gloves over my normal gloves.

The nurse made another attempt on my left hand and still was unable to get a useful vein, the cold makes veins contract and even though my hands had been warmed up there the vein appeared but could not take the full length of the needle so she removed it and asked the other nurse to try it out.

Another hand another try

A few minutes later, I offered my right hand, one good vein was moving around and there was a lot of tapping before a vein near the thumb phalanges was found, after insertion, she was not sure it was right, I then injected with saline solution to check if it was through, it appeared to work.

She said the glucose solution that goes in with the chemotherapy treatment would have been painful if she tried to determine whether she was through to a vein. However, she was only fully satisfied after she connected the glucose solution and lowered the bad to see if gravity would make some blood flow out.

The chemotherapy Caelyx solution was then connected and set for an hour of infusion but with that feeling of being unsure she said I should try not to move my hand just in case the flow was disturbed – I reclined my seat and fell asleep through the period of the infusion.

When the infusion kit was removed, I asked if I could still submit blood for tests in readiness for the meeting with my consultant in 9 days, I could not do those tests on Friday because they were a special set of tests. I was informed the blood could have been taken through the infusion system, well, now I know.

Four pricks in a day

I left the chemotherapy ward for the blood clinic where I warned that precautions be taken because I had just receive chemotherapy, the bloods were taken in 4 vials and that was it. A whole 4 needle pricks in one afternoon, sometimes I feel I am going to be irrationally truculent a scared of the needles and then try to think nicely about it to help things happen – I surprise myself.

I tried to see the priest but he was out today and I made my way home.

That was the end of my 7th chemotherapy session, I now only have one left. Thank God.

Cancer: No journey is the same

Cancer humanises us

The news that King Charles III has been diagnosed with cancer brings a sense of shared humanity in its frailty, suffering, mortality, and survival. We are told it is not prostate cancer and it was discovered when he went in for a procedure due to an enlarged prostate. [BBC: King Charles diagnosed with cancer]

As a monarchist, a fellow human being, and a survivor of cancer, I can only wish His Majesty a full recovery and restoration to health and vigour. Yet, a cancer diagnosis can come with shock and a dire prognosis, in my experience, is not a battle to fight as only the real tools we have against cancer are faith and hope. Faith that the medicine, the miracle, or both work and the hope that there is a life after cancer.

This looks serious

I watched as what seemed like Athlete’s Foot on my left sole change from the dark blotches of discolouration into a painful weeping sore, I foolishly thought it would go away even as a little voice in me whispered this was cancer tugging at the heart of my life ready to thrust me off this mortal coil.

Eventually, I summed up the courage to go to my doctor demanding urgent attention as the pain had become otherworldly unbearable. The moment she saw my foot, she said, “This looks serious, I have to refer you.” Immediately, she was on the phone to the hospital and moving heaven and earth to get me in as soon as possible, and I got an appointment for the day after.

On observation by the consultant, he said, this is serious and is related to internal diseases, the internist would be in next week on Tuesday, it was Thursday, and I’ll be the first person he’ll see. I was given painkillers that killed nothing, a placebo would have done much better to manage the pain.

I have heard, then again, I know the pain of cancer, I was eventually on 4 different kinds of pain management, the most effective being a Fentanyl patch that I received a doubled dosage of after a few weeks because that pain just refused to fully subside.

We can treat this

Several analyses were conducted on what were fungating tumours that antibiotics did not seem to affect, having eliminated a diabetic cause, a deep biopsy of the lesions was done, and then the consultant came to my bed to give me the news on the 9^th day of my admission to the hospital.

These were his words, “We can treat this, but it depends on how your body can take the treatment, if you can tolerate it, you’ll be fine, otherwise, you probably have 5 weeks.” Two things I took away from this message, the advances in cancer treatment for Kaposi’s sarcoma were such that medicine had confidence, and the fact that mortality loomed 5 weeks away left you with a sense of the gravity of what a cancer diagnosis might mean to anyone.

At that point, I thought, I am going to survive this because I had by then navigated the Kübler-Ross Five Stages of Grief, skipping Depression and Bargaining to reach an Acceptance that I spoke within myself, “Akin, you have cancer, what next?” I was already looking beyond cancer and with that, I had my belief, my faith, and my prayers with the support of many friends and particularly neighbours.

Treating cancer, killing cells

I began my 1^st course of chemotherapy on the 5^th of October 2009, it was to be administered at 10:00 AM but delayed for 3 hours, I did not know that after the course I would be consigned to cytostatic ostracism as the cytotoxic component of pegylated liposomal doxorubicin (tradename Caelyx) meant no one should be in contact with any of my bodily fluids for up 5 days after chemotherapy. Nurses had to don personal protective equipment (PPE) to take blood or dispose of my urine. It was unpleasant, the treatment and the treatment.

As I tolerated the chemotherapy, more sessions were added, and I became more nauseous after every session three weeks apart that by the 5^th session, I was given novel anti-emetic medication to help keep my food down for the days after chemotherapy.

When I saw that a 9^th chemotherapy session was scheduled, I remonstrated to my consultant that I was planning on restarting my life from the 1^st of March 2010 when I was to have received the 8^th chemotherapy dose, they stopped with the 7^th which I took on Monday, the 8^th of February 2010 in the afternoon after I had attended the funeral service of my dear friend Dick van Galen Last who sadly did not tolerate the chemotherapy as well. We had the same oncologist.

By the 4^th chemotherapy dose, the cancer lesions had disappeared, and beneath the necrotised skin which had to be stripped off was fresh pink skin which however did not retain that colour.

What to expect

Each cancer journey is different, I count myself fortunate that the body of knowledge accrued from many who had no hope when medicine first encountered these cancers, others on whom experiments were conducted and never survived, then those for whom successes led to improvements and advancements that we further down the line took advantage of because medicine was confident and the treatments could be better managed for good outcomes.

• Do they know what you have?
• Do you understand it and how far gone is it?
• Is it treatable and what is the prognosis?
• What particular outcomes do you want, what options do you have, some might just want to go home than face gruelling cancer treatment? 
• How prepared are you in spirit, mind, and body for this journey?
• What is your source of hope in the midst of adversity?
• What support networks do you have to draw on?

Hope springs eternal, I believed and saw myself beyond the cancer and probably not much further, but each stage of progress gave the kind of assurance that there will be life after cancer and even if there was none, I would not have died in despair, hopeless, hapless, and without any sense of having lived well.

It is the most encouragement I can give to anyone facing cancer, it is a difficult process, it is part of the human story, some survive, and many do not, we are all grateful for life, but the biggest battle when faced with adversity is whether you can see yourself getting beyond it or life ending because of it.

There is no judgement in what you see, either way, your life and your story would be you lived, you loved, you touched and were touched, and the rest falls into the annals of timeless eternity, you walked this earth and will never be forgotten.

The blood in the tales

Hospital days

Hospital appointment days are mainly just like fully given to the hospital, worse still if the appointment is in the afternoon, you probably can do nothing the whole morning waiting for it and once over you are too exhausted to do much with the rest of the closing day.

Today, I met with the main consultant and superintendent of my treatment programme, he is one of the head honchos in Internal Medicine as well as an academic professor in medicine, I read he was working on monoclonal antibodies for his PhD in the 80s – I knew enough about that research to be impressed.

The correct numbers

This was my second meeting with the consultant after I was discharged from hospital but before I met him there was the basic routine of checking my weight which by reason of my shoes and clothes was boosted by 2 kilograms to just over 70 kilograms, my blood pressure and pulse read within the limits of very normal.

I have decided to put no faith in this portable wrist blood pressure meter toys, I had one before I fell ill and it always gave readings that I was hypertensive, it got to a point that I was beginning to believe those readings until the readings at hospital told a more accurate story of normalcy.

The dangers of trying to handle ones medical needs by self-medication and the use of portable customer gadgets in my case was only so evident – some things are best left to the professionals and their well calibrated and accurate machines operated in a supervised setting.

Soon after the measurements were done, I saw the nursing expert who handles the social and emotional consequences of a diagnosis of serious illness and what needs to be done, I remembered her from when I was on admission, before I was discharged she went off on a 5-week holiday to Nepal, she asked to see me after I had met the consultant.

Looking good reading good

The consultant came to get me and was quite impressed to see how I walked and commented on the considerable improvement he had noticed, I agreed that a lot had happened, the lesions had all disappeared by December and though there is still some skin shedding everything feels fine, he later examined my feet.

He felt my treatment was going really well, from all the results that had been presented in the blood tests, I was responding very positively to all my treatments including the chemotherapy.

Significantly, he noted that not all the results he needed from my blood tests had arrived, those tests could take up to 2 weeks to be fully completed and results presented, he was quite curious about what they would reveal.

The other effects of chemotherapy

He said the haemoglobin, cholesterol, liver function results all looked fine but for the fact that my immune system still looked suppressed, the numbers were not encouraging but the percentages had gone up by 50% percent.

This lead to his wanting to curtail the chemotherapy sessions because whilst the evident cancer had disappeared it also had the effect of impacting on the immune system leaving one possible vulnerable to infection.

It was then that I learnt that additional chemotherapy sessions had been scheduled, that was something of a blow to me, for 2 months I believed that I will only have 8 chemotherapy treatments which would end on the 1st of March, it was the basis on which I had made may arrangements including trying to get back to work.

I deserve to know all

I just could not bare the thought of sitting through even one more session after the 8th chemotherapy therapy regardless of how well I was responding to the treatment, I needed a Ground 0 from where I could begin to get on with rebuilding my life – my consultant fully appreciated a prospective employee could not have chemotherapy sessions waiting in the background at an interview.

My consultant for medical reasons as the overseer of my treatment was now more interested in reading better results from by blood with regards to a vastly improved immune system, he would chat to the oncologist about it.

The next meeting with the oncologist is next Thursday, I also intend to make it clear that I am do not intend to continue on interminable chemotherapy treatments that do not have a clear idea of when it would be concluded – for crying out loud – I am entitled to know how much I have to endure without being tortured by trickle-down information.

It will be 8 and no more than that, I am NOT emotionally prepared and I do not intend to prepare myself for any more than that.

Maintaining the status quo

The readings from the blood tests also indicated we would not change any of the medication I am on till when we meet in another three months, meanwhile, when the other blood results arrive, I will get a call depending on what it all means.

So, another box full of prescriptions are going to delivered soon, this also provided the opportunity to talk about the eye irritation I was having for which I received a gel and the sudden attacks of acute claustrophobia I had about a month ago – the panic attacks as he called them might be related to pain management but if they returned I was advised to seek medical help.

Pain management was left to me, I could decide to halve the medication and consider the effects whilst I try to wean myself off the pain medication – we would just have to see how that pans out.

With all that done, we scheduled new appointments, completed the prescriptions, shook hands and said goodbye.

Miscellaneous matters

The nursing assistant was busy, so I had to wait for a while, it was then I learnt that I could find a full range of support services through the hospital if required, something I never knew before.

We talked about her trip to Nepal where she did a lot of hiking and mountaineering, touching on the subject that Westerners seem to have seriously organised working lives that they chose to go on busy chaotic holidays as a form of relaxation – an interesting perspective I’ll say.

After that, I called in on the priest, we did not have much time to chat, but I gave him the basics, I have a proper appointment booked to see him when I return to see the oncologist next week.

Whilst I was quite happy with the general results, I was taken aback by the issue of the still suppressed immune system and the additionally planned chemotherapy treatments – I expected a lot from today, I am grateful for what I already have and thankful for how far we have come – hospital visits end up as long tales and the detail is almost always in the blood.

The tolerance of chemo means more

New routes to hospital

Christmas Eve saw another visit to the hospital to see the oncologist, usually, I see the oncologist the Friday before the Monday when I go for my chemotherapy sessions.

The bus timetables changed over a week ago and with it the bus routes also changed such that the easy one-changeover trip to the hospital was no more an option.

Now, I had to take the tram and then a 5 minute walk to the hospital, since I no more use crutches, it was not that difficult a trip to make.

My friend of 25 years had arrived the day before to spend Christmas with me and offered to accompany me to the hospital, having company at hospital is always good.

We arrived for my 14:45 appointment some 20 minutes early and eventually got called in by the junior doctor I saw 3 weeks ago.

Not now let off

I thought I would get the promise of being let off chemotherapy, he was quite impressed with the improvement on my feet, all good young but thin skin, looking healed but he wanted a second opinion from the consultant oncologist.

He came in and he also expressed his happiness with the improvements which he attributed to my responding well to the chemotherapy, he then asked how well I tolerated the chemotherapy.

I honestly told him I just felt more tired and sleepy but suffered no other side effects, with that he suggested that I have up to 8 chemotherapy sessions.

Whilst I was quite disappointed the logic was that if one tolerates chemotherapy that well then more should be given rather than less because it makes the treatment presumably more complete. If however, I was hardly tolerating the stuff then there would have been a case for discontinuance.

Meeting the priest

Then I was put in the emergency queue for blood tests which basically had me going through as I submitted my forms to the blood clinic.

After that we went to see the catholic priest who I make a point of visiting on the oncology appointment days but never on the chemotherapy days, he was about, that was good because I had a card and present for him.

We had a lovely talk and then he offered to pray for us all, his prayers were quite deep and very meaningfully aligned with the Scriptures, in fact, my friend and I were quite taken by it all, considering Pentecostals seem to think they have a handle on prayers – one has to give some credit to Catholicism, and I have, the more, since I met this young priest.

Shopping for Christmas

On leaving the hospital, we shopped at a Ghanaian shop for condiments, food and ingredients for Christmas, got some meat from a Halal shop and eventually returned home.

I later went for the Christmas service, which was a bit too funky for my liking, clapping to Christmas carols with guitars and drums in the background are just what my kind of traditional Christmas is about, I suppose, I would be looking for something more sedate next year.

What a day it was.

Boldly tell your doctor everything

I tell it all now

There probably is a drug for every type of condition if you can articulate to your doctor exactly how you feel and your doctor is aware of that condition, to offer the best advice or medication to help with that situation.

During the time of my illness and the process of recuperation, I have learnt to be more open about the things I observe about my body, my feelings, my reactions and my comfort to my doctors; there is no time to be embarrassed about having to drop your pants and show them things.

With this kind of information, my doctors have sympathetically heard me and sometimes adapted or modified my medicine to help me get better and feel better about the medication I use.

Healing the pain

The two areas where I have benefited most from the management of my medication in relation to how I feel have been in pain relief and sickness manifested as vomiting.

I think by now we have gotten the reduction of pain down to just using an epidermal patch, which I place on the skin of my belly that releases 25 micrograms per hour of Fentanyl [1] into my body fat over 72 hours.

This required a little adaptation; the patch itself can easily come off, so my neighbourhood nurse gave me sheets of transparent plasters I could place over the patch to keep it fully adhered to my body – that advice came because I freely offered that information of discomfort, not knowing there was an easy remedy to the situation.

Stopping the throw-ups

As for vomiting, that has been brought on by all sorts of things, it was first with the morphine in the hospital, I was taken off that and given pills to handle the pain instead. A change in my medication brought on more vomiting, so I had to take suppositories to reduce the nauseating effects. In fact, the suppositories are still part of my daily medication as an antiemetic.

After my first chemotherapy, I had read up on the side effects and asked if I would have the antiemetic pills for that particular chemotherapy. I was given something similar, but by my fifth chemotherapy, it was not as efficacious as before. I was so horribly sick for days, unable to keep food down or take my medication.

So, at my last meeting with the oncologist, I mentioned this. It was important because it was based on my saying I was tolerating the chemotherapy well, that my dosage was increased from the initial 6 to 8 sessions, and no,w after my fifth, it looked like I was not managing it that well.

What the doctor ordered

The oncologist prescribed Emend aprepiant [2], which, with the other anti-emetic medication I already use, helps prevent chemotherapy-induced nausea and vomiting (CINV). It consists of three pills, the first large dose to be taken an hour before chemotherapy and for the two days afterwards.

Apparently, it blocks the vomiting signals from the brain rather than from the stomach, and I could almost say I feel the battle between my brain and stomach, where I know I would not vomit even though there seems to be every inclination to want to vomit – the wonderful power of chemicals in the body.

Looking through the side effects of using Emend is interesting because it literally has all the ones we know that chemotherapy sometimes causes, like hair loss, loss of appetite, itching and so on, but I must say, stopping the vomiting is probably the better trade-off in the circumstances.

As for drowsiness, well, I have been doing a good deal of sleeping all day, a good few of the pills do cause drowsiness in any case, but Emend is just what the doctor ordered – don’t be afraid to tell your doctor all the truth, it always helps.

Sources

[1] Fentanyl - From Wikipedia, the free encyclopedia

[2] Emend aprepiant

More chemo but not worried

The early bird, I was

It was exciting as well as the fastest time I have been in and out of hospital; it was all over in just an hour and much really was done.

My appointment was for 9:30 in the morning, which was early, I had to set my alarm for 8:00 AM and after 3 “snooze” knocks, I was up and out of bed in 15 minutes.

I had to get my wounds paraphernalia that is the Mepitel silicone film dressing, the absorbent material and the bandage. I have never said that the bandages are self-adhesive, the nurses love those bandages, it means they do not have to fiddle with sealing tape and there is no danger the bandage would suddenly come off.

Quick to the point

With the bus and the tram, I was in hospital by 9:23 AM and within 5 minutes I was called in by the doctor, the consultant oncologist is away in New Orleans on some peer junket as these very senior people and wont to and I have met this youngish affable doctor before.

I hobbled on my crutches to his office and chatted about my condition, the condition of the wounds, the sudden occurrence and disappearance of dysentery over the last week, the couple of time I was so nauseous I was sick in the toilet and my sometimes itchy hay-fever eyes which he thought might be related to the chemotherapy.

The doctors usually require a nurse to do the bandages, but I am already a dab hand at doing them myself, I wanted him to see the condition of my two feet in the hope that I could persuade them not to put me on another course of chemotherapy.

I got out my scissors and snipped of the bandages and he was quite impressed at the technique first and then the condition of my two feet.

Six courses were prescribed

The minor detail I did not have about my treatment was that normally for Kaposi’s Sarcoma six courses of chemotherapy are recommended – my heart sank, but for good behaviour, if that count he has written in my notes that maybe I be let off after the fifth – it would all be well, I am quite hopeful.

The fact was I thought an assessment was done each time to ascertain the efficacy of the chemotherapy before offering another course – you learn.

Immediately after that, appointments were made for Christmas Eve for another date with the oncologist and the Monday after Christmas for the fifth course of chemotherapy, the fourth course is on Monday.

The trick of a prick

They also needed to do a blood check which was quite an express service, I got my number, I was called and I did not have to wait be get to see the nurse, as I pulled up my sleeve the veins are glowing ready for the needle prick, before I knew it, the cotton wool was on my skin and we were ready to say good bye.

She hoped I had a wonderful day, I wished her a rewarding day which gets quite slow in the afternoons and she was going to be there until 5:00 PM.

When she mentioned the weekend, I hoped she would make the best of it and before I knew it I was talking about my guest from Stockholm who had contacted me through my hospital season blogs, who became friends and is now visiting.

The nurse also blogs about embroidery and I found myself giving her the address of my blog page, I hope I get to see hers if she leaves a comment on my blogs.

The compassionate priest

Then, one final thing, I had promised myself that on days without chemotherapy I would visit the catholic priest who came to my bedside when I was in hospital, so after he attended to patient, customer, parishioner – really what do you call someone who sees the hospital chaplain?

He invited me into his office, offered me a drink and we chatted at length about so many things, I kept in mind he had an appointment in 30 minutes and really, I do not want to take up his time on a seemingly social visit.

I however learnt that it is rewarding for the priests too to know that patients they have seen before are recovering well and though there are dangers of getting emotionally involved the situation is a priest cannot really be apathetic in their ministry which is one that should thrive on compassion.

The hospital parish

A hospital might well be a parish, but the parishioners do not have the essential quality of permanence as you would have in a local community, they come and go, they are old and new, they are ill or well and mostly every time, they are different.

One interesting insight in our conversation was about the professionalism of doctor that do not necessarily have to be empathetic and the caring nature of nurses who are involved in the everyday treatment and recuperation process – the latter do always get the chocolates or flowers but the former, go home sometimes with bottles of wine as gratitude from their patients.

My visit to hospital was no doubt very pleasant and fulfilling, it is however another wonderful course of chemotherapy on Monday again – Thank God always.

Chemotherapy was taking death to gain life

There is a delay

Five days before, I was put on ARVs and today, the Monday, 12 years ago, I was preparing for my first session of chemotherapy which was to be administered in the morning. The hours of the morning past and no one had come to collect me, I was waiting for chemo.

It was three hours later that I was wheeled in my bed to the oncology ward, the drug was attached to the cannula and the war against cancer wherever it might be in my body had begun. One hour, it took for the bag of reddish fluid ensconced in aluminium foil to drain into my veins.

Death and life in Caelyx

In my condition, I did not have an immune system to fight infection, that had been crippled by HIV, then chemotherapy was literally going to trash it completely. Even if the option presented itself, I did not have the presence of mind to reserve my sperm as this episode was going to make me infertile. I guess when your life is under immediate threat, you can’t be thinking of procreation.

Then, I was told this particular drug, liposomal doxorubicin (Caelyx) does not have the side effect of the loss of hair, not that I had any to lose. The aftermath of the chemotherapy was I felt bloated, it was considerable discomfort and It did not feel like it was gaseous or maybe I was too constipated for it to pass through my system.

An untouchable, I became

I returned to the ward to find out that they have put up a cordoned, not hermetically sealed, but it was indicative of me presenting a chemical hazard to anyone who approached me. Cytotoxicity being the issue, the chemotherapy whilst it killed cancer cells, also killed living cells and so it was dangerous for anyone to come in contact with any of my bodily fluids for the next 5 days.

Blog - A life of cytostatic ostracism

Through the 7 sessions of chemotherapy that I had every third Monday with a blood test the Friday before to determine how I was tolerating the treatment, after that, it was the complete absence of strength in the second to the fourth day and the emesis that got the better of me. It got to a point, I just could not keep my food down. They had something for that too.

After cancer to the future

Now, these have become stories, memories to recall and a sense of gratitude for having come through such an ordeal. Then I say, the medical cure of cancer sending it into remission is probably just part of the story, going back to life after cancer presents what I called the long tail of cancer. I lost everything, everything except hope, that was the only building block I had left to start life over again.

Blogs - The Cancer Tales (2009)