My Journey with NETs: Part Six

Posted September 16, 2016 by Passages of Time
Categories: Neuroendocrine Cancer, Uncategorized

Tags: , ,

On my last visit to Sister Jane as an outpatient at Donald Gordon Medical Centre, she noticed that there was redness around the wound which felt warm to the touch, which she identified as infection, and urged me to report immediately to the hospital.
I was seen by another surgeon who was on duty in the wards, namely Dr. Sharan Rambarran. He admitted me to a ward, where he took blood and sent me for an ultrasound. On the evidence of a significantly high white blood cell count, Sharan arranged for an antibiotic drip; the ultrasound showed that I had fluid across the abdomen above and below the mesh.
Dr Anders Grotte came and looked at the wound and found that there was a weak abscess point on the skin which was about to burst, and on the recommendation of Professor Botha, he lanced this point releasing a large volume of infected fluid.
Once this had been drained, he fitted a colostomy bag to collect any residual fluid, and I continued in hospital being monitored daily still on antibiotics, and having blood taken on a regular basis. The colostomy bag was drained twice a day and the fluid carefully measured.
After three weeks of careful monitoring I was pronounced fit enough to be discharged, with a course of antibiotics to take with me. Back at Pauline and Mike’s home I continued recuperating, managing the drainage of fluid from the colostomy bag myself.
After about three days out of hospital, I started feeling nauseous, and when given supper one evening began vomiting. I retired to lie down on the bed, but soon developed a sharp pain on my right side, and continued backwards and forwards to the bathroom attempting to vomit. Through the night I experienced bad pain and eventually around 4am the next morning asked my wife to drive me back to hospital.
I was admitted in the early hours by Dr Sharon Rambarran who took blood and sent me for more scans – although the white blood cell count was up, though not as high as previously. I was put back on an antibiotic drip pending the results of the blood and urine cultures ordered.  The scans showed fluid under the mesh as well as the presence of a kidney stone in the right kidney – an urologist was called in and he arranged for me to be taken to theatre where he was able to remove the stone.
During the next two weeks I remained in hospital while they continued with the antibiotics and managed the continued drainage of fluid from the abscess point.
I was again visited by Prof Botha and his surgical team on a regular basis; in particular, Dr Anders Grotte devoted considerable time visiting me and reviewing my progress (in between long sessions in theatre with liver transplants and other liver operations he was involved with.)
Across the hospital environment I had made many friends amongst the medical staff, physiotherapists, food servers, cleaners, and the porters who tirelessly wheel patients backwards and forwards to radiology and theatre. Many of them were familiar faces back in visits in 2014 for liver surgery.
Eventually I was discharged for the last time and returned to Mike and Pauline’s home.
After visiting Sister Jane and Prof. Botha, and with their approval, we departed for Durban in early July,.
The fluid continued to drain from the abscess point and I left prepared to manage the daily dressings myself, and agreeing to visiting wound therapists in Durban on an ongoing basis.
In all we had been in Johannesburg for three months, two and a half months of which I had been in hospital.

My Journey with NETs: Part Five

Posted September 14, 2016 by Passages of Time
Categories: Neuroendocrine Cancer

Tags: , , , , , ,

An Exercise in Perseverance: the Hernia Repair and subsequent events

In South Africa, March is the start of Autumn so we travelled to Johannesburg with little in the way of warm clothes expecting to be there a maximum of three weeks; little did we know that we would be there three months and that I would be in hospital for around two and half months.

The start was straightforward, we travelled to Johannesburg by car on the 27th March (Easter Sunday) and I booked into hospital at 6am on the day of my hernia repair operation on Tuesday 29th March 2016. Professor Botha said that the hernia was larger than he had anticipated, but that he had successfully put it back using a ‘biological’ mesh.

After the operation I ended up in ICU for a few days and was then sent to a general ward for my recovery. I was familiar with the hospital routine, with nurses doing regular BP, Glucose levels and temperature checks at regular intervals, and of course Clexane injections in my stomach area to limit the risk of deep vein thombosis; I was alsso of course having daily physiotherapy. There were some issues namely the development of cellulitis on the left side of the wound and a reaction to the Clexane in the form of red patches which developed at the sites of the injections. The other issue was that I did not feel like eating and was picking at my food. The Doctors were anxious that my bowel should work, and with the help of a daily dose of Movical this started happening but in a somewhat limited way.

Then one afternoon I felt incredibly sick and vomited green bile (engine oil colour) several times. One of the surgeons on the team Dr. Anders Grotte, who was on hand diagnosed a blockage of the bowel which was confirmed by ultrasound and CT scans. Then, (probably my worst experience) , a young nurse came in to the ward to administer what in medical terms is known as a Nasogastric Intubation involving the insertion of a plastic tube (nasogastric tube or NG tube) through the nose, past the throat, and down into the stomach as a sump tube to remove the bile. I don’t think the nurse was experienced in this procedure and I ended up with blood coming from my nose before I literally shouted for her to stop. Fortunately Anders appeared and with the help of local anaesthetic spray in my nose and throat, gently managed to insert the tube without further trouble.

Scans revealed that a section of bowel was stuck to the mesh and I was wheeled into theatre for a second operation to unblock the bowel which involved a new vertical cut following the route of the first op I had in 2009. Fortunately they were able to free the bowel without cutting a section away.

Back in ICU, I had a central venous port inserted into a vein under the collarbone and was fed intravenously with a carefully prepared formulation from a plastic bag on a stand above my bed. This continued for several days and I think I had a total of six bags of the formula.

Then I contracted a gram negative infection: Klebsiella, and was put on antibiotics. The days that followed are something of a blur of medical personnel changing drip lines and continuous monitoring of vital signs, blood tests, ultrasounds and CT scans. It was suspected that I had a mesh infection and there was a fluid build-up below the mesh.

The other issue was the fluid leaking from the new wound for which a wound specialist Sister Jane Hoole, attached to the Hospital administered what is known as vac therapy involving a special foam dressing on the wound attached to a pump which using negative pressure draws fluid from the wound into a canister; she visited me in hospital every second day to check, and where necessary replace the dressing and remove the collected fluid.

In the period of this hospital stay, I was visited every day by Prof Botha, Prof. Britz and/or other members of the surgical team, including Dr Anders Grotte. They were I think  dismayed at my situation and concerned that unless the situation improved, I might well have to be taken back into theatre for the removal of the mesh.

Fortunately this was avoided, and after a number of weeks in hospital, I was eventually discharged with the caveat that I needed to watch for evidence of further infection when I would need to report back immediately.  I departed with a portable vac pump and vac dressing with a commitment to visit Sister Jane Hoole twice a week.

During our time in Johannesburg we were fortunate to have been able to stay with Colleen’s sister Pauline and her husband Mike in their home in Chartwell. This is where I returned after this long stay in hospital, and was grateful for the support given to us by the family and their graciousness in allowing us to stay for such a protracted period.

In the meantime, autumn was changing to winter and Colleen was obliged to buy warm clothes for us both, as we had only brought up summer gear expecting that our visit would last a maximum of three weeks.

I checked in with Professor Botha on one day and we discussed the possibility of our returning back to Durban. He was not too concerned but emphasised the need to watch for infection and to immediately book myself into our local hospital in Hillcrest if this occurred and get the local Doctors to phone him or a member of his team for background and advice.

On the question of the timing for the PRRT treatment, Prof. Botha felt that I needed to have a clear month with no infection before proceeding with the motivation.

Sister Hoole was also happy for me to return to Durban and agreed to contact a colleague of hers based in Durban who I could visit for follow-up treatment.

I agreed to wait another week for my next visit to her rooms before leaving for Durban. But this was not to be.

 

 

My Journey with NETs: Part Four

Posted September 10, 2016 by Passages of Time
Categories: Neuroendocrine Cancer

Tags: , , , ,

New Challenges: Introduction to Nuclear Medicine/Incisional Hernia  

Following my second liver operation, I continued with a Sandostatin injection every 28 days, and regular meetings with my Oncologist. I returned to Donald Gordon in May 2015 for an MRI and a follow-up discussion with Professor Botha.

The MRI showed that the liver had grown in size and was completely free of tumours; on the basis of this Prof. Botha was initially of the view that we could continue with an MRI every year.

However, we debated the option of having a Gallium 68 PET/CT scan which it seemed was available at a Government Hospital in Johannesburg. This Gallium-68 (Ga-68) DOTATATE PET/CT scan is a high-resolution full body scan, able to detect tumors not seen on MRI, PET, CT, or Octreoscans. Because the Gallium agent binds very strongly to the somatostatin receptors 2 and 5 of the neuroendocrine tumor cells, it can more effectively detect very small tumors and metastases. This was important for me in view of the risks of further spreading of tumours to other parts on my body.

We agreed that this was the right route to follow and Prof Botha said that he would provide the necessary motivation for the scan and would book the scan for me, hopefully before the end of 2015. My Medical Aid initially declined to fund the scan, but did refer the matter to the South African Consortium of Oncologists and on their recommendation ultimately agreed to give the necessary approval. We then discovered that the machine at this hospital had broken down and would not be repaired until funds became available in their next financial year 2016. So it became a waiting game.

Prompted I believe by God, I continued my research and discovered to my amazement that the scan was also available at the Steve Biko Academic Hospital in Pretoria (associated with the Department of Nuclear Medicine at the University of Pretoria).

We managed to arrange the scan for the 2nd March 2016 and I set up an appointment o meet with Prof Both on the 9th March to discuss the results.

Towards the end of 2015, as a result of the muscle weakness in my abdomen associated with the radical surgery I had undergone in 2014, I developed an incisional hernia on my right side, and after consulting with my own Doctor, and my oncologist,  I decided to leave this until my meeting with Prof. Botha, in case other surgery might be indicated from the results of the Gallium 68 scan.

We travelled to Johannesburg in early March and had the Gallium Scan as arranged at Steve Biko Hospital – it was an interesting experience and logistically quite a challenge to drive from Joahnnesburg in the early morning rush hour traffic and find our way to the Hospital in Pretoria to arrive by 9am. But we achieved this and spent most of the day there leaving around 4pm. The scan went well and I experienced little if any discomfort.

The results of the scan which I discussed with Prof Botha showed the presence of new tumours in the left lung, left adrenal gland, multiple lymph glands, and C2 vertebra. On the positive side,  I am seen to be an ideal candidate for Peptide Receptor Radionuclide Therapy (PRRT). Professor Botha said that although it might be possible to surgically remove some of these tumours, he felt that the better route was PRRT treatment. This is also available at Steve Biko Academic Hospital in Pretoria.

Peptide receptor radionuclide therapy (PRRT) is a molecular therapy used to treat NETs (neuroendocrine tumors). In PRRT, a cell-targeting protein (or peptide) called octreotide is combined with a small amount of radioactive material, or radionuclide, creating a special type of radiopharmaceutical called a radiopeptide which in my case will be Lutetium 177 (Lu-177).

When injected into the patient’s bloodstream, this radiopeptide travels to and binds to neuroendocrine tumor cells, delivering a high dose of radiation to the cancer. Unlike chemotherapy which tends to impact on good cells as well, PRRT is very targeted with minimal damage to good cells, and little compromise to the immune system.

I showed Prof Botha the incisional hernia I had developed and he agreed to repair it on the 29th March 2016.

So we returned to Durban in preparation for the return to Johannesburg for the hernia repair.

 

 

 

 

 

My Journey with NETs: Part Three

Posted September 9, 2016 by Passages of Time
Categories: Neuroendocrine Cancer

Tags: , , , , , , , , , , , ,

Liver Surgery

After an MRI scan and careful health examination to ensure I was well enough, in September 2014 I booked into Donald Gordon Medical Centre, a private training hospital in Johannesburg, for the first of two liver operations by Professor Jean Botha and his team. The plan was to first remove the few tumours on the left lobe, which would ultimately become the remnant after the entire right liver lobe (plus gall bladder) was removed in a second operation.

Prof Botha had explained to me the importance of ensuring that there was sufficient liver left to maintain liver function, and to achieve this, I would have to undergo a portal vein embolization after the first op which would effectively block the blood supply to the right lobe and divert it to the left lobe. This would stimulate growth of the left lobe and an MRI would be done after around six weeks to confirm that the left lobe was large enough to allow for the removal of the right lobe, which carried the bulk of the tumours. The PVE would be done by a leading Interventional Radiologist Dr.Charles Sanyika.

Mike Morphord, the anaethetist  visited me early on the morning of the first op, and explained the risks of the operation, as well as from the epidural he would be inserting to control pain. He confirmed that he would be ‘covering’ me with Octreotide throughout the operation to avoid ‘carcinoid crisis’ always a risk with surgery to remove carcinoid tumours.

He described them as caged bears which start roaring when disturbed. In carcinoid crisis, the carcinoids flood the system with an overwhelming amount of hormones which can be life-threatening. At the same time he would be monitoring every heartbeat through a line inserted in my wrist – he mentioned that a recent patient in a similar operation had experienced carcinoid crisis and that was able to bring her safely through this. (As it happened I did have a moment in the op when my whole body flushed and my blood pressure went haywire; fortunately Mike controlled the situation.)

I was wheeled down to theatre and the tumours were successfully removed from the left liver lobe – those familiar with major liver surgery will know of the long horizontal chevron-shaped cut across the abdomen. Afterwards I went to ICU which at Donald Gordon Medical Centre, works on the ‘closed’ ICU model. Unlike an “open” ICU where the physician responsible for the patient admits the patient to the ICU and keeps the formal responsibility for the patient and his treatment; a “closed” format means that the responsibility for the patient and his treatment is transferred to a specialist in caring for critically ill patients. Of course other Doctors, including the Doctor caring for the patient until the ICU transfer, are consulted as needed.

On the third day I was taken back into surgery for the portal vein embolization procedure. From ICU I was transferred to High Care and later discharged.

My recovery was good, and after six weeks I returned to Donald Gordon in November 2014 for the second operation. Prior to this, I had an MRI to determine the amount of growth that had occurred in the left liver lobe – this amounted to slightly more than 15% and Prof. Botha felt that I could go ahead with the second operation.

Mike Morphord was again the anaethetist and he warned me that this was radical surgery, and there was an outside chance that my liver function would not prove adequate for survival. However on a more positive note, he said that although my liver function would initially struggle to get going, in their experience patients in 90% of cases made a good recovery.

Once again I was given an epidural for pain, and in an operation lasting some five and a half hours; they removed  65% of my liver with the gallbladder,  using the same horizontal cut used in my first operation.

Recovery this time around was not so smooth. I the first day or so my liver struggled to get going; then I contracted a gram negative bacillus infection requiring strong doses of antibiotics, then I had to have fluid drained from below my lung, From ICU I spent some days in High Care before being placed in an isolation ward from which I was discharged after seven days.

In both spells in Donald Gordon Medical Centre, I was truly thankful for the dedication and professionalism of the Doctors and nursing staff, and their genuine care for me at all times. They deserve much praise for the unassuming manner in which they go about their work in often very challenging circumstances.

The team of surgeons under Professor Botha spend many hours in theatre doing liver transplants and performing other forms of liver surgery, despite which they gave me every attention during my stay, and were always concerned for my wellbeing and recovery .

For both of the operations, we were fortunate to have the opportunity of staying with our niece in Johannesburg who very kindly gave up her bed for us and I was able to slowly recover in a relaxed setting.

After the second operation, problems were swollen legs and feet, due to low Albumin levels (protein manufactured by the liver), and cellulitis on my legs. It was only after about 4 weeks just before Christmas, that I felt strong enough to be driven home to Durban some 560kms away.

Recovery too several months but slowly I began to feel better and  the Albumin levels increased to close to the normal range.

During my time in hospital, I was very conscious of God moving in all circumstances – I had made it my mission not to see myself as a victim but rather to be an encourager for the Doctors, nurses and other patients that I came across. On one occasion God led me to engage in conversation with a young man who had been struggling with a bad infection for some months – the reason for his admission. His wife and children apparently travelled a round trip of 400kms every day to visit him. He shared with me that some years previously he had a brief affair, and now felt that God was punishing him for this. I was able I hope to reassure him of God’s love for him and the possibility of forgiveness and transformation.

Finally, I have to pay tribute to the many people who have prayed for me (and continue to do so) through my illness – these include members of my own Church, the Home Group I lead, and various others in different places including the UK and New Zealand. I feel that I am carried through all the experiences I have undergone on a cloud of prayer, which has given me great peace and been a source of spiritual growth.

 

 

 

 

 

My Journey with Nets: Part Two

Posted September 7, 2016 by Passages of Time
Categories: Neuroendocrine Cancer

Tags: , , , , , , , , ,

God Leads my Research

I often tell people that God works even through Google – that’s my experience.

For the first months of 2014 I spent time finding out as much as I could about Carcinoid Cancer which I learned forms part of the umbrella category of Neuroendocrine Cancer.

At the same time I joined a Facebook support group called Carcinoid Café which has a membership of around 2000 mainly drawn from the USA but including others from Britain, Europe, Australia and even two members from South Africa (I am one). This proved to be a mine of information and practical experience as did Dr Liu’s Zebras that I joined later.

Incidentally I learned that the term Zebra which is used by NET patients to describe themselves, comes from the training of Doctors. They are apparently advised when hearing the beat of hooves, to think ‘horses’ not ‘zebras’, I assume to avoid too much focus on exotic disease in their diagnoses. Hence the experience that many NETs, such as carcinoid tumours which are slow growing, go undiscovered with the patient’s symptoms being misdiagnosed as Irritable Bowel Syndrome or similar.

I also trawled through the official NET sites on the Web and watched a number of YouTube videos of presentations given by experts at various conferences.

It has been said that if you have lived with a relatively uncommon disease such as Neuroendocrine cancer for six months or more, you have PHD in the subject – my experience is you need to add research to this equation to really qualify; but certainly I have found myself engaging with Doctors on aspects of the disease where their own knowledge is sketchy to say the least.

The breakthrough came when God led me to read Ruth Gerdes’ story (see http://www.netpatientfoundation.org/2009/05/ruths-story-2)

In her story she made mention of a liver transplant surgeon Dr Jean Botha at Nebraska Medical Centre, who had performed major liver surgery on her to remove all the tumours on her liver. Incredibly, (although not difficult for God) I discovered that Jean Botha was a South African and was now heading up the Liver Transplant Unit at Donald Gordon Medical Centre in Johannesburg. (Some 98% of all liver transplants done in South Africa are done at his facility.) I was able to find an email address for him and emailed him that evening, and he replied I think within 10 minutes saying that he would be happy to see me.

So my wife and I travelled to Johannesburg to meet with Professor Botha who turned out to be everything that Ruth described – a man without arrogance and a leader in his field. He told me in no uncertain terms that given my situation, the “wait and see” approach was unacceptable and that if I did nothing,  the tumours would spread to other parts of my body, and that the chances were that I would be dead within 5 years. The good news however was that he could remove all the tumours from my liver through surgery in a two stage process, which he said was pretty radical but he was confident in their ability to accomplish this which should extend my lifespan by at least 10 years, instead of five.

Having listened to him, I had a sense of peace about things, and simply said that I trusted him implicitly and would be happy for him to proceed with the surgery. He responded with the utmost humility that he felt honoured to have my trust and assured me that he and his team would do everything possible to ensure that this trust was not misplaced.

 

 

My Journey with NETs: Part One

Posted September 7, 2016 by Passages of Time
Categories: Neuroendocrine Cancer

Tags: , , , , , , ,

I have been on a journey with Neuroendocrine Cancer since around 1999 and have decided to try and document my experiences both physical and spiritual,  hopefully as an encouragement to others.

I would like to pay tribute to the many people who have prayed for me (and continue to do so) through my illness – these include members of my own Church, the Home Group I lead, and various others in different places including the UK and New Zealand. I feel that I am carried through all the experiences I have undergone on a cloud of prayer, which has given me great peace and been a source of spiritual growth.

Words cannot express my gratitude to Colleen my wife, who has bravely stood by me throughout, lovingly supporting me, being my sounding board and practical adviser and helper in every challenge, always keeping me positive and lifting my spirits. To a very large extent, my journey has also been her journey.

God has been present throughout the journey, and as I look back I can see his loving interventions in so many situations, and his response to prayer.

Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. (Philippians 4:5-6)

 

Part One: First Stages

As a blood donor for many years I arrived to give my ‘pint’ as usual, only to be told that my iron levels for so low that it would not be possible to take blood from me; armed with a packet of iron tablets I went to my own GP who arranged blood and stool tests, establishing that I was bleeding as evidenced by occult blood in the stool.

Thereafter I was subjected to a series of colonoscopies, endoscopies, and scans to determine the source of the bleeding;  apart from concluding that it was probably in the small bowel, no final diagnosis was made. So I continued with iron tablets and regular blood tests and got back to my normal life.

Early in 2009, I began to experience sporadic stomach gripes, particularly it seemed after eating something like a muffin. This became worse over a few months until I was experiencing bouts of stomach pain often at night, which found me clutching the mattress of the bed in agony.

My GP referred me for an ultrasound, in March 2009 which picked up the likely presence of carcinoid tumours in my small bowel which was causing a blockage. I was referred to a surgeon who ordered an MRI which confirmed this diagnosis and on the 1st April 2009, he removed two carcinoid tumours from the small bowel mesentery together with six lymph nodes.

During the MRI which proceeded the surgery I had a moment of anxiety, which resulted in what I can only describe as a profound spiritual experience. It was as if God himself touched my shoulders and spoke Peace into me – in an instant I relaxed and have managed to maintain this wonderful inner peace throughout the challenges of my illness.

After the op. the surgeon referred me to an oncologist who administered blood and urine tests every three months and a CT scan every six months and for a few years there was no evidence of persistent disease.

In October 2013, a follow up CT scan (confirmed by a subsequent MRI) showed the presence of carcinoid tumours in the liver. At this time I was experiencing flushing which is symptomatic of “carcinoid syndrome” (a condition where the carcinoid tumours release excessive amounts of serotonin into the body) and I was put on Sandostatin LAR 30mg injections every 28 days to control the carcinoid syndrome and to slow down the growth of new tumours essentially in a holding pattern.( I have been on these injections ever since.)

It was at this point, prompted I firmly believe by God,  that I decided to research my condition more thoroughly to satisfy myself that a “wait and see” approach was adequate in the management of my disease.

Relationships

Posted September 6, 2016 by Passages of Time
Categories: Relationships

Tags: , , , , , , ,

It’s all about relationships, the care we take to build them

And not about the rules we set in order to control

And as we grow in closeness, we get to understand

That independence cannot be a substitute for love.

 

Our strength lies in the bonds we tie with others in this life

Not judgment and control which serve to keep us far apart

So everything we learned about the need to be in charge

Is handed back to Him who knows the secrets of our hearts.

 

Lets seek out love in all we do and everyone we meet

And try to stop controlling in our efforts to be big

It’s all about each other and not about ourselves,

And serving Him in all we do and never giving in.