Sunday, 6 October 2019

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.

Wednesday, 11 September 2019

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.

Saturday, 24 August 2019

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.

Tuesday, 13 August 2019

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.

Monday, 29 July 2019

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.

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!