Friday, 19 July 2019

Good news, probably

Nurse Kate rang me this morning with mainly good news. The MRI found no lesions in my liver and all the images over three months show no increase in size of the lump. The most likely diagnosis therefore now “autoimmune pancreatitis” rather than cancer. So guess what, there will be more tests to try to confirm that using the material from the last EUS and a further blood test, oh happy day. If necessary, I may have to have yet another EUS. 

AIP is an example of a protean disease called IgG4 dependent disease, characterised by the immune system taking it into its head to attack one or another of the organs. In the case of the pancreas, it closely mimics pancreatic cancer and is hard to distinguish from it. It’s much rarer than the cancer but now seems very likely in my case, what a relief.

According to Wikipedia,  the treatment options are an oral steroid like prednisolone or, if too far advanced for that, an immunosuppressant like methotrexate.

Once I’ve got my head around this major change in my prospects, I’ll try and post at more length. One thing I can’t do tonight is have a drink – alcohol is a bad idea with pancreatitis.

Wednesday, 10 July 2019

A slightly pointless appointment

I had an OP appointment on Monday afternoon, technically a follow up from my admission last month. It was a useful review of where we’re at, I guess, but we didn’t learn anything new, much. Main outcomes are that, failing to get a tissue based confirmation of a cancer, there’s no point in starting chemo. Meanwhile, the hotspot found on my liver by the PET scan needs identifying, so I’m booked for an MRI of that area next Friday afternoon. I’ve also been sent for a load more blood tests, some to confirm that the infection has gone and some as a general check up on how my liver and kidneys are coping. That meant a quite long wait in the blood test clinic which tends to be very busy on weekday afternoons.

The consultant who saw me this time (they work as a team of about four of them), Dr Haq, confirmed that I’m a highly unusual case in taking so long to tie down a diagnosis. The difficulty is that some non-malignant growths, an autoimmune one for example, can so precisely mimic a malignancy in its symptoms and appearance on imaging that it’s been known for the patient to be sent to Nottingham for the major surgery of removing the head of pancreas only for it to turn out to be non-malignant after all.

If the MRI does find something in my liver, the next step will be to get a biopsy sample of that with an ultrasound guided needle.

What larks, Pip!

Monday, 1 July 2019

The saga continues

Spoke to Kate the specialist nurse today. There’s good news and bad news...

First off, the latest biopsy samples, one of lymph and one from the mass, were adequate for analysis and did not contain any atypical cells. However, the team continue to be suspicious of the lump. Not so good is that the PET scan found a hot spot on my liver, so the next step is an MRI scan of that area since the CT scan didn’t find anything there. If it’s a new little primary, then it could be excised like any other cancer that’s caught early but if it’s a secondary from the pancreas tumour then it’s not good at all.

And I guess it might just be some artefact of the scan and not really anything at all. I’m down for an urgent MRI, probably next week.

Meanwhile, I’m going to speak to my GP tomorrow as taking enough Zomorph to properly control the pain seems to be stopping me from peeing properly, so I need to change analgesics.

Once again, many thanks to all of you who’ve written or commented with support – it really is appreciated by both Sheila and myself!

Monday, 24 June 2019

Nothing changes

After having the third EUS (endoscopic ultrasound) and a PET scan, I’d been hoping to get some feedback after last Friday’s MDT case conference, but Kate never rang and she’s on leave this week. This leaves us all up in the air still but does imply nothing alarming like metastases were found. Would have been nice to be told that, though. Similarly, the repeat CT scan showed that the mass had not increased in size in two months.

On the plus side, every attempt to find cancer cells or definite signs of a tumour that fails increases the chances that this was a chronic infection, now treated with hefty doses of antibiotics. In which case, I’m not sure what further treatment is available, though steroids are a possibility, I think.

Meanwhile, we all have to wait and see...

Tuesday, 18 June 2019

Private investigations*

Thought I should do a quick catch up since it’s been a while. Turned out I was still to have a third EUS, this time by the senior consultant. I’d just about recovered from the antibiotics in time to have my tum upset all over again last Thursday. (By the way, talking of unpleasant experiences, there’s enough alcohol in Oramorph solution to trigger the side effect with metronidazole. Found that out the hard way in the small hours of the Saturday morning before last and got through the rest of that weekend just on co-codamol every six hours, which wasn’t a lot of fun.)

I wasn’t too bad after the EUS, just a bit sore and with very limited appetite for a couple of days. I had the PET scan yesterday afternoon, being taken there and back by Steve and Denise who wanted to do some furniture shopping in Nottingham. The Department of Nuclear Medicine is actually at Nottingham City Hospital, off to the NE of the city, not far from the Mansfield road. A 4 o’clock appointment meant nil by mouth except water from 10 onwards, much tougher to do than just missing breakfast for a morning slot, but we made it ok.

It’s a tedious rather than uncomfortable procedure as it takes much longer than a CT scan, twenty minutes in my case. That’s twenty minutes of lying dead still on the quite narrow gurney as it trundles back and forth inside the white tunnel. The injection of special medium an hour beforehand makes you mildly radioactive for a few hours, so the staff stay well away from you once you’ve had it. They can’t even help you get off the gurney when it’s all over: which can be a problem after all that time on your back in a tray with curved sides and your arms out above your head.

It’s only just occurred to me today that if  “InHealth Nottingham” were prepared to shell out for a couple of the fancy lead aprons they all wear in Endoscopy in the Royal when doing an ERCP, the staff wouldn’t need to keep away...

Heigh ho, a few days of nothing much happening now until I’m discussed in the MDT case conference on Friday morning, after which Kate will ring me with what’s been decided.

*It’s one of my favourite Dire Straits tracks, even if some people think it’s the most boring thing Mark Knopfler ever wrote, so there!

Thursday, 6 June 2019

Out on licence

I’ve been given time off for good behaviour and sent home. I knew it was looking good when Nurse Rose came into my room yesterday morning and took the cannula out. I saw the medic team later and was told that I’ve had enough gentamicin and so can go home and take the other two antibiotics orally. Sheila recruited Bill Smith to bring her in and collect me that afternoon so here I am back in the lodge, feeling a bit feeble after no serious exercise for 6 days.

The other good news is that it’s been decided not to attempt another EUS, praise be, but to send me for a PET scan instead. Positron Emission Tomography is a bit like a super-CT scan, involving infusing a solution of a glucose analogue labelled with fluorine18 into the blood stream. F18 is unstable and emits gamma rays as it decays. These are detected by the machine and used to produce a 3D image similar to the CT process. Since rapidly growing cells take up more glucose than ordinary ones, a tumour becomes apparent in the image.

So it’s time-to-wait time again. The Royal has made an urgent referral to QMC Nottingham’s Nuclear Medicine department for me, that being the nearest PET scanner, and I should be getting a phone call sometime soon, hopefully.  The estimable Jo James has already planned out how to take me there, thank you Jo.

Meantime, I just have to live with usual consequences of taking two potent antibiotics by mouth...

Sunday, 2 June 2019

Living in limbo

Well, here I am banged up in the Royal Derby for an undisclosed term. No, it’s not a sudden deterioration, it’s another twist of the waiting game. Having had a repeat endoscopic ultrasound, some pus was discovered and sent off to microbiology. I was given a five day course of the broad spectrum antibiotic co-amoxiclav to take while we waited for results. Next thing I know, on Thursday morning I get a phone call from my excellent specialist nurse to say I’m to be admitted that day for IV antibiosis. With the welcome transport help of Bill Smith, I was admitted to ward 304 that afternoon.

Initially housed in a four bed bay, I’ve been transferred to a single side room because even my pee shows some bugs so I’m being barrier nursed at the behest of Infection Control. The barrier nursing isn’t too onerous, nothing fancy just extra care with procedures to avoid cross-infection. When they changed my sheets, for example, the dirty ones were put in their own special pink bag.

I’m having three antibiotics by drip: amoxicillin, metronidazole and gentamicin. I saw both the consultant and the specialist nurse yesterday. Seemingly, I have three different bugs lurking in my pancreas and they’re sensitive to different drugs, hence the mixture. It’s a bit tedious sitting around here – the food’s not too bad, the nurses are fine and competent but the day ends with a drip at half eleven and starts with another at five. At least I have plenty of chances to nap during the day. I’ve had a repeat CT scan and may well need yet another EUS, oh joy.

The thing is, three attempts at biopsy have failed to find undoubted carcinomatous cells, so it’s possible still that this is all a rare form of pancreatitis after all.

Further discussions will take place tomorrow morning, Monday. Meantime it’s a life of drips and blood tests...