Not very good news, again

Things take a turn for the worse, I fear. I meant to write up the blog about this earlier but just haven’t got round to it now.

After having a CT scan two weeks ago to find out why I’m having trouble keeping solid food down, I was seen in clinic last Wednesday. It’s not good news, I’m afraid. The scan showed no obstruction of the duodenum, but there are several hotspots in my liver and the tumour is compressing one of the arteries that feed the colon, the superior mesenteric artery. This means I’m in stage 4, palliative care only, too risky to attempt surgery or even chemo. I might have several more months or things could go downhill quite quickly.

I’ve been referred to the community palliative care team and have been left with an open appointment to see the oncologist. I’m not in any extra pain yet so the blood supply to my guts must still be getting through, but obviously the danger is of ischaemia (lack of blood supply) causing tissue death in there with serious consequences that I’m slowly getting my head round.

As always, we’ve had loads of support from the Mercian community with visits, transport and all sorts of offers of help. For example, it’s boat shuffle month in the marina for the residential boats, but we’ve not had to do a thing, our fellow moorers moved Sanity Again with shafts and ropes to her new berth. I just had to take the credit off the old electric meter and put it on the new one, an advantage of the new smart card meters now installed on our pontoon.

I’ve got a GP appointment on Tuesday to sort out some tangles with my repeat prescriptions and to discuss the Respect form I completed in the clinic. This is a new scheme being rolled out across NHS districts for folk in my situation to record their preferences about the balance of quality vs extension of life and to take the Do Not Resuscitate decision (no point of it in my case, when the end comes, it comes).

After a few days of feeling panicky and depressed, I’m coming to terms with it all. I’m still watching Strictly so my first milestone goal is to survive long enough to see who wins.

Another little problem

I saw the oncologist yesterday, which was good timing as things have recently started to get a bit more difficult. I won’t bore or disgust you all with an account of the search for a laxative I can tolerate, suffice it to say that good old senna has proved to be best. I’m taking rather more Zomorph to keep the pain under control and opiates tend to slow your gut down, hence the need for a counteractant.

Unfortunately, on Sunday evening I found out the hard way that solid food isn’t going down well anymore. I’m currently living on a variety of fancy liquid nutrient products, like Complan but in small quantities. Dr Morangie, one of the GPs, had already written me up for some, fortunately, and I had a chat with a dietitian at the clinic yesterday to explore more of these. They’re all quite tasty and so far seem to be staying down.

Dr Shankland, the oncologist, is referring me for another CT scan to see what’s going on in there. The concern is that this is gastric output obstruction or GOO for short. The lump may have started compressing the duodenum, the bit of intestine immediately below the stomach, so that food can’t escape from the stomach in the normal way. The result is very like the problem some babies have, pyloric stenosis, which results in projectile vomiting. The short term answer is to do what I’m doing, survive on liquids, not too much at a time, so that it can find its way through slowly.

The long term answer is, guess what, another endoscopy, this time to place a stent in the duodenum to keep it open. I’ll see Dr Shankland again as soon as I’ve had the scan to discuss that and maybe actually start some treatment. I’ve not been able to put on any weight, what with one thing and another, so the chemo choices may be more limited.

I have to say that all this is finally getting through my mental defences. Being restricted in what I can eat and feeling precarious about my internal processes means that the phony war is over. What I think of as the beast in my belly is being more than just a bit of a nuisance, making me use Creon with my food and take morphine to keep on top of the pain. It’s showing its teeth now, becoming life threatening in a very real way. If it gets to the point where I can’t keep fluids down I’ll start to dehydrate and will need admission for IV feeding.

Still, there are positives. We’re going to get to the Braidbar Owners’ Weekend this weekend, staying in an Airbnb house in Poynton with Elanor and Sally. It’ll be good to get away from Mercia for a change of scene for a few days, though of course we continue to be hugely grateful to all the Mercians who give us so much support.

There’s good news and then...

I had a phone call from Kate yesterday to say that the latest biopsy finally produced some usable material for histology. Unfortunately, the result wasn’t what we are hoping for as cancer cells were identified and I’m now confirmed to be suffering from a pancreatic carcinoma. This is a bitter blow, of course, but there are still positives in the situation in that the tumour is growing remarkably slowly and there must be some hope that chemo will keep it under control for quite a while. Pancreatic cancers vary a lot in how long they take to kill you, though it’s usually pretty rapid. The other plus point is that we know from all the investigations that the beast has not yet metastasised.

I’m due to see the oncology consultant on the 10 September (she’s on leave at the moment) and will use this time to try to put back more of the weight I’ve lost. The aim is to be fit enough to tolerate the Folfirinox regime, the more robust of the alternative chemotherapies. Can’t say I’m looking forward to it, but at the moment I’m inclined to give it a try for at least a few cycles. It will be a case of assessing quality of life versus extension of life. Some people, though a very few, manage to live with this cancer for years, so I’m not giving up hope yet.

Going down for the fifth time...

...down my throat, that is! It’s been a while, so I thought I’d do a quick catch up. Last Thursday I had my fifth endoscopy in four months, this time the combined ERCP and EUS. That is, Dr Austin, in a longish session for an endo, took out the stent from my bile duct, obtained several biopsy samples guided by the ultrasound and then put the stent back in. In the course of it all I received a fair whack of the medazolam sedative, so my memory is pretty hazy for the later stages. Probably just as well judging by how long it’s taking for the internal bruising to wear off. I’m nearly clear of it now, Tuesday.

I was starting to need more and more paracetamol and Oramorph on top of the slow release Zomorph, so I went and saw one of the GPs this morning. I had to settle for the locum, couldn’t get in to see my favourite Laura Saunders as they are a bit short handed at the moment, it being summer hols and all. No matter, I’ve had an increase in the dosage and a change of one of the other, side effect controlling, drugs I wasn’t getting on with. I won’t go into details, you might be eating whilst reading this.

On the plus side, the change of possibilities means that we’re starting to think about design issues with OMDB again. I’ll do another quick post over on her own blog about that.

Don’t know when we’ll get the results of the latest biopsies – sometime next week, probably. Once again, many thanks to the transport team who uncomplainingly ferry me and Sheila about and collect prescriptions and things. We’ve made much use of Jo James, Jean Gittins, Pete and Sue Horridge and Bill Smith since I last posted, it’s so good to have all this friendship and support.

No news, probably

The saga continues. Sometimes I have trouble remembering there was a life before this when I went boating and stuff and my contact with the Royal Derby was once a year to check my eyes. I heard from specialist nurse Kate today but there’s no change in the situation. There wasn’t  enough material in  the tiny needle sample to find the IgG4 cells which would mean I definitely have autoimmune pancreatitis (AIP), so histology needs a bigger sample unless the blood test I did on Friday comes back positive. 

The plan is for a mega endoscopy session combining the two types I’ve had, ERCP and EUS. The stent is in the way of getting a full biopsy sample, so it will be taken out so as to get a big ultrasound guided biopsy sample (instead of just the fine needle one) and then the stent put back in. Only the senior consultant can do both and things are a bit tricky at this time of year because it’s holiday time so it may not be for 2 to 3 weeks. It needs an overnight admission. If the blood sample turns out positive, all that will be cancelled and we can start treatment for AIP.

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.

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!

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!

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...

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!

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...

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...

Thank you, everyone

The main reason for this post is to say a heartfelt thank you from Sheila and myself for all the messages of support we’ve been receiving by commenting on here, replying to my post on the Braidbar Owners’ Group Discussion Forum, by direct email and in person. I know from being on the other end at times that there’s not much you can say, but it still makes a big difference to us.

There’s not a lot to report: I’ve had a repeat Endoscopic Ultrasound to try to get a better sample for biopsy and, thanks to the Bank Holiday and school holidays, I won’t see the consultant again until a week next Tuesday. The histology report won’t be ready before then anyway, probably. The EUS found some pus lurking around, likely the aftermath of the first one, so I’m on antibiotics as well as everything else.

I think the only comment I have to make about that procedure (which at least went a bit more smoothly this time) is that the info leaflets might be a shade  more honest about the aftermath. It’s generally a very safe procedure, with only low risks of a serious adverse event like a gut bleed, but inevitably your tum doesn’t appreciate having tubes shoved through it and being blown up like a football. It takes it a few days to get back to whatever passes for normal. The info sheets used at Derby warn of the danger signs for bleeds and so on but otherwise just say that you can expect around twelve hours of discomfort while the trapped air escapes.

I’ve found it better to take three days off the normal diet in favour of soft foods like tinned rice pudding, fruit and yoghurt – I’m just about back to eating properly again now but plan to stay off the booze until I’ve finished the antibiotics, that is until Tuesday.

A change to the advertised programme

I’ve been having a few months of back pain, responding to paracetamol and exercise but not going away. At diabetic review a couple of months ago, my Hba1c (the measure of long term blood glucose control) had jumped from 6.5 to 7.5 so I started on metformin with the usual gut disturbances. They settled but I started having gut pain as well. When my skin turned yellow, we realised that things were serious. 

I had a CT scan and a fancy gastroscopy to check out the bile duct and the conclusion at case conference afterwards was that the mass in my pancreas is almost certainly a tumour. It’s already involved some blood vessels, so is non-operable. The plan was to get final confirmation of the diagnosis from an endoscopic ultrasound with fine needle aspiration for cytology. The brush cell collection done during the previous gastroscopy was inconclusive so they want to be absolutely sure which variety of tumour it is before starting chemo, probably the latest 3 cytotoxics variant (Folfirinox) as I’m reasonably fit and should be able to handle at least a few cycles. Unfortunately the FNA sample was inadequate too, so it’s going to be repeated next week.

I have at least recovered from the jaundice – my liver is not damaged, just knocked out of kilter by the bile duct being blocked by the tumour. The duct’s been dilated and a stent put in to keep it open. It has now recovered completely. I’ve had a first meeting with a consultant oncologist and been prescribed oral morphine to use alongside the paracetamol for pain control and a wonderful preparation called Creon. These are capsules containing the digestive enzymes that my pancreas is no longer producing. You take them with every meal so as to get the benefit from the food. I’ve lost quite a bit of weight but should actually put some back on now.

Hopefully, the chemo will halt tumour progression and maybe even shrink the beast but nonetheless this is not a good diagnosis. Can’t yet estimate likely survival, but it doesn’t look like Sheila and I will be celebrating our golden wedding in two year’s time though it might just happen yet. The challenge is to stay positive without going into denial of my plight. Things have moved on a lot over the last couple of years when pancreas cancer was called the death sentence diagnosis and survival was measured in a very few months.

We’re all still coming to terms with it, of course, our lives have been suddenly turned upside down. Any boating we do will be short trips fitted in amongst clinic and chemo appointments. I’ll use this blog to publish any further developments as they occur.

New blog is up

I’ve just published the first post in the new blog: Just One More Darn Boat. It’s a new blog, so give me time to tweak the appearance – I’m not at all sure about the pink!

Incidentally, I’m now using BlogTouch Pro to compose these posts on the iPad. It’s early days, but it seems mostly ok so far, only had it crash once!

Here we go again

We’ve decided that we might be getting old. Sanity Again is a wonderful boat, but at 70’ and 23 tonnes displacement she can be quite a handful to heave about on a mooring or lock landing. We thought about getting a shorter used boat, but couldn’t see anything we liked. So it’s going to have to be a new boat, a Braidbar naturally, and the next build slot is not until early February/late March 2021.

After an email exchange with Donna and a phone call with James, we’ve booked that slot.

I’m going to repeat what I did with SA and keep a separate blog about it. There’s nothing up there yet, but I’ll give the link here when there’s something to read. As before, I’ll do occasional posts about our design thinking in the run up to the build and then probably a weekly one once the build is underway. What I can say here is that the theme will be minimum maintenance and a modern approach in a much shorter boat.

We’re really looking forward to working with James and his team – I reckon he’s the most exciting designer in his field these days.

What’s up?

I’ve had a couple of queries from followers as to what we’ve been up to since getting back to Mercia in July, so I thought I should do a quick catch up. The drought meant that it wasn’t possible to get to the Owners’ Weekend by boat as the Bosley Lock flight was closed. So Elanor gave us a lift there on the Thursday and we stayed in the Adlington Travelodge for the weekend, relying on the kindness of fellow owners for getting to and fro.

Despite the rain, the weekend went well. We had seven boats to show off and the weather meant that virtually all the visitors were serious about potentially buying a boat. Orders taken since the event means that the next available build slot is a start in 2021, not earlier than March (though that slot may be gone by now).

Since then, we’ve been living in the lodge and doing various bits of maintenance of both the boat and the lodge. We’ve a programme of work to do on Sanity Again, running repairs and cleaning, mostly.

Thinking ahead, we may well take a trip down the South Oxford next Spring, going on from there to Crick for the Show, then back to Mercia for health stuff. After that, we might go down the Trent to Torksey and so to Lincoln and Boston again.

Possibly, depending on the weather and our mood...

A bit of excitement on the way home

We had a couple of interesting experiences on the way home yesterday. First off, there was the body on the towpath above Tatenhill lock. Lying on the waterside edge of the towpath, this old dear was curled up on her side with some belongings nearby. I couldn't get the boat in before the lock landing, so Elanor had a bit of a walk back to her, wondering what she was going to find.

In fact she was just asleep with her glasses neatly on the ground beside her and her head resting on her handbag. Later on, as we were entering the lock, I saw her stand up, turn round and lie down again.

Just seemed an odd place for a kip, that's all.

Secondly, we've previously had bother persuading Sanity Again to leave Dallow lock when working downhill, but this time she was firmly aground and flatly refused to move. In the end, I had to draw a top paddle and flush her out. Once she was moving, I dropped the paddle and she promptly stopped again. I had to leave the paddle up until she was clear of the lock.

The pound was a bit down, but not that much. There's just too much silt in the bottom of that lock. I've emailed CRT via the website about it – they don't seem to publish email addresses for individual waterway offices any more, so I've bunged another email off to Damian Kemp at head office about that, too.

We're now back in the lodge, hiding from the sun and catching up with the laundry. Next trip will be towards the end of this month, on our way to Poynton for the Braidbar Owners' Weekend. If there's any water to boat in by then, of course...

Alright in Alrewas

A pleasant if routine run has brought us to Alrewas, leaving Kings Orchard just on half seven and arriving at a bit after ten. It was my turn to steer and for once I made the turn off the Coventry and into Junction Lock in one smooth sweep despite the audience of one volocky.

We had a straightforward trip down the locks, Sheila, Elanor and Sally lockwheeling. There was a moderate amount of traffic, so I had to hold back above Common for a while, no problem on an airless day. We've tied above Bagnall as usual.

After coffee, Sheila and I walked into the village to get a last batch of supplies including pasties for lunch from Coates. It's actually been raining a bit this afternoon, but the main shower is scheduled for six o'clock, just when I'm due to fetch the fish and chips.

We'll return to Mercia tomorrow – I won't blog about that unless there's something unusual to report.

Retracing our steps

We're getting into a routine with Elanor and Sally on board. Sheila and I get our breakfasts, walk Sally and give her her breakfast, then start boating. This lets Elanor have a lie in, being on her hols, but if she wants to get some steering, she has to get going before we finish for the day...

We've come all the way back to Kings Orchard, it being a very pleasant morning for boating, so Whittington was too soon and we decided we'd rather have a bit of road noise here rather than a lot of train noise at Huddlesford.

Elanor did a good chunk of steering, including the tricky stuff through Huddlesford with a fair bit of traffic the other way. It's a good mooring here and we've had only one untoward incident when a rather scruffy Serenity (one of the many) scraped all down the side of Sanity Again. When I remonstrated (quite calmly) the steerer said "It wasn't that bad"!!!

Must have been watching a TV programme featuring a pair of ageing actors...

We managed to get the roof, bow deck and well deck washed before lunch and have been taking it easy this afternoon. Tomorrow, on to Alrewas.