So, as I promised, I would start my blog if we reached the magic total of £5000 Back in September, well I am a man of my word. So I guess there is no better way, than to bring you all up to date with a less than amusing summary of my medical journey over the past 3 1/2 yrs.
In collaboration with my amazing, wonderful, special, incredible and brilliant Chemo nurse Vicki, we wrote a letter collaboratively to send to the teachers pension scheme to explain my medical journey. This is part of my application for medical retirement, not something I ever hoped to be writing, but sadly my health was beginning to have a negative impact on the kids in the school, something I would never want to happen. Realistically, as the letter reads, I am not in a position to be able to be the Principal I want to be at the moment, far worse, is the news that is unlikely to change and hence the application for ill health retirement.
My name is Vicky Harris and I am the assigned Clinical Nurse Specialist Haematology/Oncology at the Princess Royal University Hospital, part of the Kings College NHS foundation trust.
I met James in 2014, when I was assigned to him, once he had been diagnosed with Cell Type B non-Hopkins lymphoma (at this time the diagnosis was he had both low and high grade disease). Very quickly the Haematology consultants wanted to deal with the aggressive high grade disease, among the 19 tumours, specifically a single tumour that was 15cm x 10cm x 10cm.
James was treated with RCHOP, a standard treatment for such a disease, over 6 weeks. Immediately it was evident that there were going to be complications, during this initial treatment James suffered several complications including;
Renal issues, requiring his Kidneys to have stents
Several infectious episodes
He was regularly admitted as an inpatient to manage his care at this time.
Over the next 6 months James had an intense steroid and chemotherapy treatment. This resulted in many on-going side effects which included neutropenia, infection and hydrphonosis of the kidney, the later resulting in a variety of medical procedures related to stenting his kidneys in order to protect them, despite numerous attempts and ultimately this failed and resulted in the loss of the right kidneys. It did however, adequately protected the other and allowed for any ongoing need for treatment including both IV and oral Chemotherapy.
Neutropenia is a fairly common side effect of Chemotherapy, sadly James suffered more than most and became neutropenic after 5 of the 6 treatments, each leading to periods as an inpatient, where both fluid and IV antibiotics were administered. These stays ranged from 3-21 days, depending on the severity of the infection and the needs arising.
In October 2014, following the final treatment a PET scan was ordered to identify the state of play, with regards to future treatment. Despite some fantastic news, with regards to the reduction in the size of the tumour, there was clearly areas where tumours were visible, leading to further treatment, a Chemotherapy, called RDHAP.
Following only one dose, it was clear that the patient, specifically his renal function could not manage this treatment and it was stopped, however the cisplatin, one of the elements of the Chemotherapy treatment, left James with long term nerve damage in both feet, but significantly in my left heel.
This has rendered me disabled and despite not applying immediately I was formally registered disabled in June 2016. The drugs also lead to the diagnosis of cardiomyopathy, meaning everyday activities render me breathless.
A further biopsy at the end of November 2014, led to a 21 days course of radiotherapy. This was particularly stressful for Mr Howarth, as this was his perceived and targeted return to work date. It was simply unrealistic and medically not possible.
The course of radiotherapy was completed in January 2015, but Mr Howarth continued to suffer debilitating infection, peripheral neuropathy and neutropenia. These were all the side effects of the chemotherapy and in the back ground was an incredibly resistant lymphoma.
I understood, despite our recommendations he begun to try and complete work from home, however it was just a matter of time before, the debilitating infection once again hospitalised James. By the end of January he had been inpatient for over 100 nights.
During the following 6 months, whilst James tried to return to work, work from home and manage a phased return he was constantly in and out of hospital with infection.
In August 2015, James returned from a family holiday in Bournemouth for a routine blood test and immediately returned to Bournemouth, on arriving I contacted him personally to tell him to go immediately to the nearest A&E, as he was suffering from a total internal organ shut down, as my potassium levels reached life threatening levels and his creatinine (an indicator of kidney function) reached dangerous levels. He was admitted through A&E, to Bournemouth hospital, where following an emergency CT scan, another much larger stent was fitted and he spent a further 2 weeks in the Cancer ward, whilst all his vital signs returned to normal.
In September 2015, he again started to work, the plan as we understood it was to do a gradual return to work between October and Christmas and despite our medical reservations that is exactly what he did. At this time, in our opinion, he was categorically not fit to work.
Even during this time, his infection and kidney trouble continued to be a source of continuous issues and infection. As I remember it, he would work for 3 or 4 days and then be admitted for a 5 day course of IV antibiotics, so much so, that by this time he had now spent over 150 nights in different hospitals.
The decision was taken to remove the stent, the site of infection and it was replaced with a nephrostomy.
In December 2015, a routine 6 monthly PET scan was requested and the scan showed that the original tumour was enlarged and in addition there were three more masses.
James was advised by the medical profession that he should stop work immediately and focus on fighting the disease once more.
In January 2016, a renal consultant referred Mr Howarth to Mr Glass, a specialist nephrology consultant that was capable of performing a procedure that would lead to the removal of the nephrostomy and for it to be replaced with an extra anatomical stent. The intention being to make Mr Howarth as comfortable as possible, reduce infection, allowing the haematology and oncology team to put a plan together for Mr Howarth’s further treatment.
That plan involved Mr Howarth being infection free and being approved for a trial drug called Iydellasab (Zieleg). It was at this time, that all the medical professionals now considered Mr Howarth’s life as limited. It is now unlikely that Mr Howarth will see significant improvement in his condition. However, we very specifically state life limited, as it is possible to manage this condition for a unknown period of time. Effectively, the cancer will more than likely have an impact on the longevity of Mr Howarth’s life.
Mr Howarth, despite the extra anatomical stent continued for a further 9/10 months to have infections that regularly led to him being an inpatient, taking the total number of nights to 200. The trial drug, used to slow the growth of the tumour was stopped due to the repetitive nature of the infection.
With ongoing and debilitating infection, the decision was taken to formally and internally investigate the extra anatomical stent, through general anaesthetic. Although nothing of significance was identified 8/9 months later it would appear that the procedure was a great success and had prevented further admission due to infection.
During this time I was approved once more for the trail drug, along with this came yet another opportunity for Mr Howarth to return to work, this time we felt with a suitable phased return, it could be realistic.
However, ironically it was during this time, that Mr Howarth discussed with us, that it was evident that due to weekly consultant appointments, scheduled procedures, bloods tests and many other continuous and on-going medical interventions, let alone the extreme fatigue, which was so debilitating that doing a full day would render him bed bound for the following 24hrs.
James, at this point realised he was unable to be the Principal
During the summer holiday in August 2017, James had to fly back to the UK and was once more hospitalised for 16 days, due to infection, he currently waits for a procedure to look at his extra anatomical stent and potentially for it to be cleaned once more, with this intention of giving him a period of 6 months infection free.
In summary, his medical record is significant, his treatment plan is significant and his side effects are significant, although some elements will see improvement, his ability to hold down any form or regular work is highly unlikely, the ongoing Cancer, infection, cardiomyopathy, nutrapenia, pulmonary embolism, and most significantly the pain, pain relief and fatigue renders him unable to work on any level.
I can assure you that was hard to write, even harder to read, harder still to suffer and hardest of all, losing my school, my role, losing everything I had ever dreamed of being. However, I have my health, in many ways and most importantly I have amazing friends and a loving, wonderful and incredible family. Led primarily, by Anna, whom without which I am not sure where I would be, she is my rock, my soul mate, sparring partner, nurse, phycologist and most importantly my wife and mother of our 3 amazing kids.