Hello, I’m back

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;
Cardiomyopathy
Renal issues, requiring his Kidneys to have stents
Neutropenia
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. 

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‘Some people feel the rain, others just get wet’ Bob Marley

Since my operation in January I have been in and out of hospital every three weeks. Nearly 100 nights, let alone appointments, since Jan.
The procedure was and is functionally a brilliant bit of kit and allows me to live a normal life…. Accept the plastic bit they have added has been colonised by bugs and created horrific kidney and urinary tract infections, to such an extent that the function of the kidney, my only working kidney, is decreasing day by day and my quality of life is such that I am in pain on a daily basis. It was hoped that the extra anatomical stent would not get infected, but it has and despite all of everyone’s best attempts we can not get me infection free. My daily quality of life is now pretty poor.

What about the cancer?

Good and undetermined news, I guess. 

Despite all of the preparation carried out for the stem cell transplant, the infection prevented this from being possible, so I have not been able to have the transplant.
When you scan your body for cancer, a PET scan, you effectively feed overactive cells (cancer sells) with sugar, this then lights up like a Christmas tree on the scan, you are able to determine growth, change and obviously new cancers. The problem being so do areas of infection. So we know the cancer is still there, but we do not know if the new areas that are lighting up are new cancer or massive infection.
The good news is that all of the side effects that I would demonstrate if the cancer was high grade and this fast growing and thus seriously life threatening are not there, so the assumption is the Cancer is low grade, something that we need to watch, as it was from the low grade that the previous massive tumor mutated to become high grade.
What next?
Well the kidney has now become more life threatening or life prohibitive than the cancer, but the quality of life, created by the debilitating infection is and has been breaking me. When things are good they are excellent. When they are bad, which has become more and more often, my life is full of pain and restrictions and more often than not these put me in hospital.

At an appointment yesterday with the surgeon who did the extra anatomical stent, it was discussed that potentially we have reached a point where we should consider an autograft. Effectively this is a very serious procedure where the kidney is removed, put on ice and then grafted directly onto the bladder. This would mean no plastic tube and thus not opportunity for bugs to colonise. 
This is obviously daunting and come with massive risk, if it were to go wrong in any way, there is no turning back. I would be without a kidney and thus on dialysis.
I will be taken into hospital in the next few days, so they can surgically look at me and see if all of the bits that are needed to make this autograft a reality are there.
In the meantime, I have an infection to fight, which is a daily occurrence, but when walking to the toilet and having a wee is this painful I am happy to try anything to find a solution.
Onwards and fucking upwards, the fight continues.

Stem Cell Transplant

Ok everybody time for an update.

As most of you will know I was re diagnosed with cancer just before Christmas, since I have had a pretty serious operation on my Kidneys, which now I have shaken the infection has been a great success.

Sadly however I was told I was incurable and it was a case of maintaining the growth and spread of the cancer with a trial drug. I started taking that in January and 3 months later following a PET scan the cancer appears to have reduced in size and activity.

That was truly incredible news, so much so that I am now thought to have a chance of cure once more, although only 30%.

I feel the best I have felt in 12 months and have even done a little bit of work.

I have now been approved for a stem cell transplant. I will have a bought of Cyclo chemo on 27th May, which will drop my blood counts so I can then have injections to falsely raise them and they will then hook me up to a machine that will take my blood out of one arm, filter the stem cells, store and freeze them, whilst putting the blood back into my other arm. This will take 48-72 hours, the need to capture 2 million cells. I will then have recovery time of about 3 weeks before I go into hospital for 3-6 weeks to have the transplant, which is effectively a massive dose of chemo that kills all cells and the medical team will then use my frozen stem cells to keep me alive. This is effectively a control alt delete. The recovery time of the back of that is 6 months, once again the most dangerous aspect is infection.

Magnus the unsung hero

Ok so I have spent a lot of time in hospital over the past 18 months, in total 90+ nights! but I have never been in a situation where I can not clean myself and on the couple of occasions when this has happened! Anna has stepped into the breach and given me support so I can get up have a shave, shit and shower.
Not yesterday, my stomach muscles have been cut, I can not for the life of me sit up, all that moaning Anna went through when she had her 3 cesarean (by the way, she almost did none) now made me realise and I have had about half of that. I have also had a bloke, a nice bloke, force a tube under my skin all down my left side to connect the kidney to the bladder. That is as painful, if not more so, than the cut across my belly.
Got to think of some great stories for the kids about shark attacks for these scars, they are going to be impressive. 
The real point about this, is that the surgeons mate came round the ward and said, right we now need you cleaned up, we need to get you out of bed and have a wash. I looked at him, like he was having a laugh, but he wasn’t. He wanted me to begin mobilising. Got the terminology down to a pat.
With the help of yet again another wonderful health care assistant this time, who goes by the name of Magnus, he helped me out of bed, undid the gown, provided me with a bowl, flannels and a towel and left me to clean the bits I could reach. 
Magnus, who by the way was a 6 foot 4 black bloke, as strong as an ox, came back turned me round and washed me from my shoulders to my ass, cleaned my entry site and removed all of the old blood.
 Now what was disconcerting about this was, not that he was a bloke or black or 6ft 4, but the fact that his touch was so soft and sensitive, as if he really cared that he did not hurt me. The fact that this guy probably got paid bugger all to do this to some 6ft 4 middle aged, overweight, hairy assed whimp, who moaned and groaned, as he gently cleaned away all of the dry blood left over from the procedure. 
He eased me back into my new gown, helped me into some pyjama bottoms, which must at some point have put him in direct lines sight of my nasty and raised the bed and helped me back into it. Magnus an unsung hero.

The Op was a success

So I guess an update would be polite.
As I am writing this I am clearly out of surgery, feeling very battered and bruised, but sat in a seat next to my bed.
I finally went down for surgery at 12 midday, 5 minutes before Anna arrived to wish me well, Sod’s law.
Having now had 5 general anesthetics in the past year, the daunting nature of the cold bleak corridors and lifeless anesthetic pre theatre room become less daunting. However lying on a bed, under covers with no clothes on and knowing what is about to happen is a little unnerving. The nature of all the questions, checks and double checks is a little disconcerting. The explanation of everything that is happening is what fills me with interest and confidence, the last time I remember was of the clock just approaching 1pm and the next time I was aware it was 4:45, that is a considerable amount of time to be out. I have no idea if I was being operated on for that amount of time or if there were complications, but what I do know is this, everything that needed to be done was done and it was a success. The other thing I knew for definite is I was in agony…. I think I have used that word before and meant it, but this was agony that made me grip tight to the metal bars of the hospital bed and my feet and head writhe around. The rest of me wanted to but with each writhing motion increased pain. I exhausted the morphine and rapidly moved onto something beginning with F, that I was told was stronger, but it was not immediate pain relief like morphine has, despite the fact it was given intravenously. The wonderful nurse assured me he would get under control, despite him later remarking it was like trying to give pain relief to an elephant. I assumed he was talking about my ears and not my….. Behave yourselves, weight.
It took an hour and all I could think about was seeing Anna’s smiling face and hold her hand. 
The pain relief did its best to put me to sleep, but I fought it wanting to see my Anna, when I got to the ward, which I eventually did at about 6:15. Her smile, smell, hands and of course her snacks and drinks brought me much happiness.
It did not solve the pain, but it gave purpose to it. I was pretty much out of it and although I am a lovely drunk… sometimes. I am not the most pleasant man, under pain relief or in pain. Something Anna has reminded me of today.
This was all resolved with something that was shoved up my back passage. Diclaphenic I think.
Anna also told me the surgeon had called her at about 4:40, telling her what a success the procedure had been.
Again an example of the care and attention to detail that the NHS provide time and time again. He did not have to do that, but he knew she would be worried, so he did.
Anyway, I drifted in and out for the good part of 2 or 3 hours, Anna left at about 10 and I managed to fall asleep for a couple hours until my oxygen levels fell below 90 and my blood pressure below 100, which meant be woken hourly and slowly raised into a sat sleeping position, this went on all

Night, which did mean I was topped up with morphine until the morning.
The fun really started today, but that is an entirely different story….. Haha be sure to tune in.

Operation Time

So I am sat at home whilst everyone around me moans and groans about going back to work. Of course I get it….why wouldn’t I. Been there many times myself, although I write this from one of those massive hamster cages for children ‘crazy barn’ total madness, but the kids love it. Their sweaty, glowing, smiley faces are special.
Whilst I am on the subject of first days back, what is this INSET days on the first day of term. Bloody ridiculous, you lot have 13 weeks a year, why another day off, if I did not have Cancer, I would have had to get someone to look after my children, how incredibly inconvenient. Bloody disgrace.
So between my day 1 blog and today, absolutely loads has happened and with the exception of today I have felt pretty good. My weekly bloods are not showing any sign of deterioration, which means my white blood cell count is good and thus at the moment I am able to fight infection. This is being supported by twice daily antibiotics. Though that was an extreme measure, since I started this course of preventative antibiotics I have not been in A&E for a month. Prior to that it was every week for two months.
Anyway all of this means I can have my shunt operation. It is scheduled for this coming Friday.
What the hell is a shunt?
So as you will probably be aware I currently have what is called a nephrostomy, this is as a result of having had renal failure. Effectively I have 8% functionality of my right kidney and 30% of my left. On the left hand side the urita, which takes the urine from the kidney to the bladder is totally blocked. This has occurred due to the scar tissue created as the tumor was wasted away by both Chemo and Radiotherapy, initially I suffered similar, although not so sever, problems as the tumor squashed the urita. 
On 3 different occasions I have had a stent put in, which I have talked about in previous blogs. What I do not think I have talked about was the emergency removal of the final stent. It makes me grimace recalling it.
Anyway long story short is, it was removed without either general or local anesthetic, by an amazing surgeon who on several occasions in theatre said “I have never done this before” “get me the right equipment”. Either way, after several attempts, he finally said “by jingo I’ve got it, you’ll need to bite down on this” he handed me a bit of plastic, I bit and he pulled and the next thing I know I have a 15cm long tube with hooks on each end sat on my chest and just the smallest trickle of blood running from my eye. For those few seconds it was the most painful thing I have ever experience, but once out, it simply smarted. 

If you are slow on the uptake ladies, you do not have the kind of eye that was bleeding.

Back to the job in hand, for the last 3/4 months I have lived with a line draining my kidneys straight in a bag strapped to my leg collecting urine.
This op, which by the way I am now finishing this blog off sat in a hospital bed, waiting for them to take me down for the procedure.
Elements are relatively simple and other areas complex. It is a procedure only performed in this country by a gentlemen called Jonathon Glass, there have only been 15 other people to have had it in the last 4 years.
In summary, Mr Glass will enlarge the whole in my back where the nephrostomy tube is and feed it between my skin and muscle all the way down to my bladder. He will then create a 7inch insertion and secure it to the bladder, effectively bypassing the ureter, which sorts my problem out. The securing of the pipe to the bladder is very complex and there are many possible side effects, which is obviously a worse case scenario and for this reason I will not go into that… But it will mean I should be rid of the external tubes, bag and all the pain and infections.

Wish me luck… Off I go.

Day 1 – let’s make the most of feeling ok

 

Well the tablets are collected and the morning of the first tablet has arrived, this has all come around very fast, yet again I tip my hat to a truly incredible, amazing and mind blowing NHS. Just imagine if it was funded properly and nurses and doctors were paid appropriately. They yet again picked this up and sent me for tests, scans and biopsies at brake neck speed and this enabled them to come up with a plan, which included taking Idyela, an unlicensed drug on the NHS, which hopefully will maintain my situation, if it does after 3 months, then it is the medicine that I will take for the rest of my life. Amazing what they are able to do now.

So I unwrap the bottle full of these tiny pink diamond shape tablets and place one in the palm of my hand, raise it to my mouth, whilst a thousand thoughts go through my mind, as I begin the process of trying to kill the cancer, whilst at the same time poisoning myself and knowing that slowly but surely my health will decline. The question is just how bad will it be this time. I say to myself it can not be as bad as last time….. But…..?

Well, as I am sure you will be aware, as of 5pm today I feel no different and am preparing to go out to see the Charlatans. Today s mainly made up of painting and a football party. Fantastic to spend some real quality time with the kids, not thinking about anything else but enjoying their enjoyment.

I will tell you all about the Charlatans tomorrow.