At least the eyes are ok.

Some good news, at least, in that we went to the Eye Clinic last week to be told the the MRI of my cranium found nothing of note. The swelling at the back of my left eye is resolving, too, and my pressures are well down. It seems quite possible that the enlarged blind spot was associated with sudden peaks of BP associated with occasional fits of vomiting I’ve had when I misjudged my dietary intake.

I’m to be seen in the clinic again in three months time – if the pressures are still down (and I’m still around) it may be possible to reduce the number of eye drops I have to use.

Otherwise, we just plod on. We saw the GP Laura Saunders last week, too, for a good session tweaking my drugs. Maxine the Macmillan nurse is coming tomorrow. I want to discuss pain control with her yet again, the slow release morphine doesn’t quite last the full twelve hours, no matter how much I take, so there may be scope to add in a neuropathic pain killer to the cocktail. The hospital bed has arrived and is installed in the spare bedroom. I’ve started using it already as I’ve been having some trouble with acid reflux (heartburn) in the night which is helped by sleeping with my shoulders propped up a bit.

Sleeping apart from Sheila, together with sleeping much more these days, feels like another slither down the slippery slope but we’re blaming all the morphine for now. Time will tell soon enough but meantime we’re both sleeping rather better.

Up and down

As always, I’m starting by saying thank you to you all for your love and support, it means a lot to me.

Things are a bit quiet just now with no dramatic investigations – the next big event will be my next Eye Clinic appointment – it’s on Friday 13, but fortunately I’m not superstitious as it’s when we should get the results of the last MRI. In the meantime, I see a district nurse every two weeks and Maxine the Macmillan nurse in the intervening weeks. I see a GP every four weeks, too, so I can keep prescriptions sorted out.

It all means that queries and concerns can be dealt with without having to ring one of the various hotline numbers I’ve got.

Overall, I’m slowly getting worse, as you’d expect. It’s nothing dramatic, but my slow release morphine, Zomorph, has had to be increased a bit and I’ve had a couple of days when I’ve not got up in the morning. I won’t go into reasons, don’t want to get too clinical on here, but each time having a day in bed sorted it. Getting the diet right is the tricky bit at the moment. It’s good to try something different for a change – home made soup with a splash of cream works well, for example – but if I get it wrong my gut takes its revenge, usually several hours later.

Anyway, enough of that gloomy stuff. The other half of the family makes it across from Lincoln every two or three weeks, they were here yesterday for a few hours, and various friends from round the marina drop in for coffee or tea and a chat. What larks, eh?

Chugging on

The main events of the last couple of weeks were an MRI scan of my head including one of the orbit, the area around the eyeball, and a follow-up appointment at the Eye Clinic. The scan was a bit tedious, 45 minutes with my head in the washing machine. MRIs are very noisy, so they play some music down headphones while it’s going on. You’re supposed to get a choice of sounds, so I asked for some 60s pop, but they left the previous CD of very raucous rock on for most of the time. Not that it was much better when they did change over, it was nothing like my memory of the best ever decade for pop. And yes, I was there and yes, I do remember it.

Guess what, the results hadn’t come through by the following week when we attended out patients, but the Registrar did a very thorough review of my retinas and said that although there was certainly some swelling and a bit of a bleed there, it didn’t look sinister and will probably resolve of its own accord. I’m to go back in another four weeks.

It’s always good to be able to end these posts with another example of people’s generosity. As well as a load of transport, I’m very pleased to be able to say a big thank you to Grahame and Chrissy in the Still Waters shop. The most recent supply of food supplements, the Altrashot, the Fortisip Creme and the Complan, was a bit restricted as to flavour, mostly banana with a bit of strawberry. These are all very tasty, but all the banana in particular was becoming monotonous, a touch of a Minion diet. Sheila asked in the shop if they had any ice cream sauces in stock as a way of adding a bit of variety. They didn’t, but instead presented us with the open big bottles of sauce they keep for adding to the ice cream cones. They won’t sell much ice cream now and the open bottles won’t keep to the Spring. 

I could even have had the bubble gum flavour, but Grahame correctly sussed it wouldn’t have been popular...

Downs and ups

It’s been a mixed few days. I was rather poorly weekend before last, I won’t go into detail but by Monday night I decided I needed checking out. So, Tuesday morning I rang the contact number for the community team and after a few phone calls ended up with a visit from a GP Registrar who gave me a thorough checking out. He couldn’t find anything specific but on the basis of my symptoms started me on a five day course of amoxicillin. It’s not something they’d normally do in the absence of a proven infection, but in my case the risk of a trivial infection tipping over into sepsis before it’s declared itself is too high to take the risk.

In effect, I’m being treated as though immuno-compromised like a transplant or chemo patient.

Much more fun was Friday and subsequent days. I’m finding it a struggle to walk any great distance now, even though I’m a lot better after the antibiotics, so we’d talked about hiring a mobility scooter for the duration. Sheila emailed a fellow lodge owner, Dave, as his wife uses one having had a stroke. His response was not to bother hiring or buying, Lynn has a spare which I’m welcome to use for as long as I need it.

He brought it over on Friday afternoon and gave me a course on the care and feeding of mobility scooters. It’s an excellent machine, a type 3 which means it’s set up to be road-legal with a top speed of 8mph, though it can be set to just 4mph for use in pedestrian areas. With it, I can accompany Sheila and Sally right round the marina again. 

It’s just another example of the incredibly supportive community we’re living in here.

Plodding on

I’ve not blogged for a bit as I’ve not got much more to say, except, as ever, to express my appreciation of all the messages of support, love and good wishes from you all. Main developments have been establishing contact with the district nurses and the community palliative care team, formerly the Macmillan nurses but now funded by the NHS around here at least. I’ve seen Dr Cowley twice now, first off to sort my prescriptions and then two weeks later as a follow up. She’s started me on Mirtazapine, a tricyclic antidepressant which has both improved my sleep and lifted my mood a bit.  She also wrote me up for some injectables, the “just in case” meds that live in a box by my bed together with the necessary paraphernalia for giving them. This means that if I have a sudden bad do of pain or nausea, an attending nurse or paramedic can give me the needed drugs without delay.

It’s all made us feel more supported – the nurses each visit fortnightly, so I see one or other each week, an opportunity to check out any problems and to get that all important psychological support. I’ve got a whole set of phone numbers I can call in the event of having a problem, day or night, any day of the week.

The other development health wise is with my eyes. I had a routine Eye Clinic appointment the other day. As far as my pressures go, all was well and I would normally have been discharged from that clinic to the care of my optician, but unfortunately, the fields test showed that the blind spot in my left eye had got larger. If this had been both eyes and I was also having severe headaches, one would suspect raised intracranial pressure, which would be alarming. As it is, it’s a bit of a medical mystery (here we go again!) which needs explaining if possible. Pancreatic cancer doesn’t normally spread to the brain, so this is not likely to be a secondary. I’ve had the usual routine bloods, which only showed that I’m still a bit anaemic, and I’m booked for an MRI scan of my head to look for causes. This isn’t until the 7th of November. Oh well, I’ve been missing all those trips to the Royal Derby.

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.