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.
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.
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.
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.
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.
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.
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.
So here we are back blogging, no pressure at all, apparently I am a funny eloquent story teller, my English teacher would be pissing herself, that anyone would ever call me that. RIP Dianna Davis.
So the name I have decided to call this blog is ‘learning to dance in the rain’ seen it quoted many times by lots of people, but on this occasion my thanks goes out to Fatima Rodrigues and Martin McDonaugh
As I said my plan is to try and give you brief snippets of what life is like taking Chemo tablets on a daily basis. So here goes.
Yesterday, was the last day of term and with an exceptionally heavy heart I spoke to students and told them in my own way that, my dream was not complete but I need to take a break and get my self better.
The assembly was recorded and it obviously speaks for itself, because as I write this, it has had over 6000 views and counting. It appears to be on the verge of going viral. The comments and support shown has been truly amazing and I have no choice but to fight.
Thank you all so much.
The Hathaway End of Term Assembly
After the emotion of telling the kids, I was once again walking away from them I had to go to the hospital to pick up the Chemo drugs, which thank goodness, can be administered at home. However as the drug builds up in the system those side effects will begin to show themselves, vomiting, diarrhoea, infection and of course the depletion and decline of white blood cells, which effected me so much previously.