Days 262 – 264

Low.

Its been a hectic few days – organising and starting in on a bit of building work in the house, thinking about fields and barns (a possibility once the house is sold and my debts paid off) and visiting my friend Alex Smirnoff’s studio in Nanquidno – more of that later and in fact you could just skip over my tedious tale of trial by hospital and read about Low Brow at the bottom of the page…

But the above image is a detail of one of Alex’s paintings and there’s no escaping it – I now know what my cancer looks like!  Zoom in a bit closer and this is what you see – fiendish, intelligent, parasitic, confused, mutated, motivated, menacing, entirely other and alien.  It shouldn’t be in my body!

I’ve had a difficult three days dealing with the hospital.  I’m relieved to say that now, Thursday morning, things are resolved and I’m happy with what’s finally happening. So if you’re reading this you can skip to the paragraph ‘Ok. FINALLY some resolution.’ because what follows was written in the dark hours of last night as I tried to make sense of what’s been going on on and going wrong.

It’s 4.53am.  The dark hours.  I’m getting them every night; black negative morbid thoughts and they’re tenacious, not easy to fight off, they cling like smoke from a fire.

I’m feel being given the run-around at the hospital. Both my haematologist/oncologist Dr Kruger and my MacMillan Nurse Caz are away on holiday.  I’ve not met Dr Pottinger or Linzi, their colleagues who have taken over my case, but I’ve now spoken to Linzi several times trying to get some answers and some action, but it’s not going well.

I’m going to recap to get it straight for myself:

Sept 30th: Last chemo session

Oct 24th: Post Chemo PET/CT scan which shows a single avid lymph node in my chest.

Oct 28th: Discuss results with Dr Kruger who recommends I see Mr Awan for a repeat mediastinal chest biopsy to find out what it is, and advises that it’s 95% certain that the cancer is back, that it’s mutated into a resistant and aggressive form despite being hit with ABVD Brentuximab chemo on 2 week cycles for 6 months.

Nov 14th:  There is a delay because Mr Awan has been on holiday but I see him today. He expresses concern about repeating the same mediastinal chest biopsy because he would have to follow the same route from an incision at the base of my neck down behind the sternum – he explained that they have to insert a rigid tube (indicating a diameter of 3 or 4 centimetres) and push it down through the chest past major blood vessels and close the heart so that he can cut out a good pice of the affected lymph node.  His concern is that there will be stiffened connective tissue and scar tissue biding the vessels and organs from the previous biopsy and that there is a real risk of vessel damage or rupture which could be fatal.  He says he would do it if I agreed to the risks but he also suggested that a needle biopsy would be safer and may give us the results we need.  I opt for that.

After this meeting I see Caz to discuss the Stem Cell Transplant SCT procedure and she’s clear and thorough about that. But a strange thing happens because at the end of our chat Dr Kruger puts his head round the door to talk to Caz about something else and seeing me says hello, surprised I’m there as I’m not scheduled to see him. Caz explains we’re going over the SCT procedure and he says “But Hadrian, it may be nothing – you may be in 100% remission.” He says it twice and then he pops out again and disappears.  Now that’s really confusing.  I ask Caz later about it but she says not to attach too much weight to what he said and keep focussed on the likelihood of more cancer treatment.

Nov 25th:  needle biopsy day.  There have been delays because on Dr Kruger’s advice the Thoracic Respiratory team have had to order in a special needle in order to facilitate getting a big, clean un-mashed biopsy sample from the lymph node.  All seems to go well with the operation but I ask Dr Iles when I’m on the operating table about him using a new type of needle for this but he doesn’t answer a clear yes, perhaps not understanding what I’m asking, instead he says no they’ve been using this equipment for some months. There’s no time to follow up this confusion as I pass out from the morphine.

Dec 1st:  Biopsy Results. My case is discussed in the afternoon Multi Disciplinary MDT meeting which includes presumably the haematologists, oncologists, surgeons who are concerned with my case.  Linzi calls me afterwards and reports that there is no result – the sample was too small and damaged for the lab to analyse it.  She also suggests that they are recommending I go to Mr Awan for the mediastinal biopsy.  I don’t understand this outcome and remind her that Dr K had asked for a special needle to be used to give a bigger clean sample.  I also voiced the nagging concern that they had perhaps not used the new needle given my operating table exchange with Dr Iles, and could she double check.  I’m not sure I’m getting through and have to reiterate the concerns Mr Awan raises about the repeat chest biopsy and my reluctance to follow that line.

Dec 2nd: I decide to try to discuss the matter with Respiratory myself and contact Dr Iles secretary, explaining the biopsy sample problem and wondering if the new needle was used, and in any case was it worth repeating the needle biopsy to get a better sample. I ask if it’s possible to speak to him but Kim says he is away but she’ll get in touch with him.

Dec 3rd:  I hear back from Kim in the morning and she says she emailed Dr Iles who says yes they did use the new needle but no there was no point in repeating the needle biopsy. No explanation was given for this.

Late afternoon Linzi calls.  She has also spoken to Respiratory and has no new news. She suggests we should book me in for the mediastinal biopsy with Mr Awan. I raise the concerns he had again and suggest perhaps we should repeat the PET/CT scan. She says not it not possible to do this as you need a three month gap between scans because of the danger of radioactive damage.  I don’t understand this and we have a confused discussion about how the mounting delays might affect the likely outcome of Stem Cell Transplant SCT if the cancer is progressive etc.

I’m passed over to Teresa Batchelor (Transplant Coordinator) who thinks I want more details about SCT but I explain that I understand that procedure quite well but that I don’t understand why Linzi is saying I can’t have another PET scan for three months when Dr Kruger booked me in for a second interim scan within 4 weeks when the hot spot in my liver turned up.  She says that a repeat scan is likely to just show what we’ve already seen. I disagree suggesting that, given it will take at least two weeks to get me on the PET scan list, it will be two full months since the last scan and plenty of time for the cancer to have grown or spread if it is indeed the virulent form it appears to be.  That might either suggest enough info to begin SCT or offer an easier node for biopsy.

Teresa and I also discuss the needle biopsy again but this time I’m told that the sample was of good size and clean but there was no result  because the sample had not been taken from the right place.  So if not from the avid node then where did they take it from and why?  What went wrong?  And why can’t it be repeated then?

I need more information.

She suggest I wait until Dr Kruger returns on the 15th. I voice my concerns about the further delays and the fact that if we do that then nothing will happen until after the New Year and that this is too long if in fact the cancer is back.  She says she will discuss it with colleagues and get back to me in the next day or two.

This has been very frustrating and I’m beginning to loose faith in what is happening here.   It’s now 7am and I must try to sleep…

Dec 4th: Ok. FINALLY some resolution.

I call Haematology again at 9.15am and speak to Teresa again. This time we make some good progress. She has talked to Dr Pottinger and has some answers.

1) The needle biopsy failed because the node was too deep and they couldn’t reach it. They took a good big sample nearby just in case but it was inconclusive as it showed negative but then it wasn’t from the node anyway.  There is no advantage to repeating it – the node is inaccessible that way.  Ok.

2) The PET/CT scan – the reason they recommend a 3 month wait is that when there is a repeat show in a PET/CT scan the suspicion is that sometimes this is simply a reaction of the tissue to the chemo, and they need to wait three months for it to die down.  Kruger would have ordered the second interim scan because the avid spot in my liver in Month 2 was a new showing and therefore worth checking again sooner.

We then had a debate about whether the current avid node was a new hot spot or a node that has previously shown cancer but this would need comparison of all the scans to resolve.  We also debated whether the current avid spot should be considered a new show given that the cancer had disappeared from my chest in Months 2 and 3 entirely.

I suggested booking another PET scan now assuming it will take 3 weeks to come through and that after discussion with Dr Kruger on his return we can always defer it.  Alison agreed to discuss this with Dr Pottinger.

Half an hour later Teresa called back to confirm that they were booking me in for a PET/CT scan for before the end of December, and that I was also booked to see Dr Kruger on the 15th and also had another appointment booked for the 19th with Mr Awan if Kruger and I decided to proceed with the mediastinal biopsy.

Good, some positive action.  I would hope that we would opt for a new PET/CT and assess the results of the new scan so that Mr Awan would be operating with the latest information to hand, or not at all if the avid node had disappeared.  The debate with Kruger will be about whether to scan at two months or three…and if it is cancer how much risk is involved in delaying the Stem Cell procedure by another month.

At last. A clear a logical plan.  It’s been a difficult and unsettling three days but I feel we are back on track now.

Low Brow.

Visiting Alex Smirnoff’s studio twice in the last week I’ve had a crash course in an art form I’ve been largely unaware of called Low Brow.  Teresa G. who kindly came with me the second time homed in on it right away, but I’m very out of the loop.  It turned out that it was me that needed help.

Low Brow is right out there in every sense, and Alex is out there with it but living on the edge of West Penwith with the vastness of the Atlantic at his doorstep, his nearest partners in crime also on the West Coast, but 7000 miles away in California, facing the Pacific.

I’ve known Alex for some years, a wonderful musician who has moved through traditional Celtic pipe and whistle playing par excellence and is now devouring jazz saxaphone, and whose art making has in the past woven stone carving and landscape and narrative portraiture together but who is now producing work that doesn’t seem to fit here at all.  I’ve been looking for clues; Neolithics, rock pool flora and fauna, natural granite forms, but nothing of his immediate environment seems to be present.  Maybe the fact that West Cornwall gets the 2nd highest reported alien spaceship sightings comes closest, or the latent radioactivity of the granite peninsula itself; Nanquidno valley full of a heady mix of Ozone and Radon.

The morphed and hybrid figures that populate many of the paintings blur between cartoon hyper-realism, abstraction and decoration and seem to exhibit anquish, menace and charm all at the same time, envoloped in an obscure environment, the limitless world of the mind or the microscope…

I homed on on three works that appear to be a new departure…

All images reproduced with permission – Copyright Alex Smirnoff 2014

SAM_3153

SAM_3159

SAM_3160

SAM_3161

SAM_3157

[Click on the images to enlarge]

Alex is developing a new website but to see some more work click HERE

And I used a detail from one of his PaintBlob reworkings of other peoples paintings as the header image for Day 77 Strange Birds.