Monday, 4 November 2019

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.

Saturday, 26 October 2019

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.

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.