Notes Wednesday 3rd May 2017.

• A temperature spike this morning.

• The infections are getting more frequent. Ven has no clear answer as to why it is happening. It could be the cancer itself (pointed to by recovering on just paracetamol, also heart rate not raised) or the collection of bile (which are forming in the 3 parts of the liver where it showed up on the CT scan (7th April). [We had been led to believe it was 2 parts not draining.]

• The microbiologist Ven had talked to suggested a 6 week course of antibiotics, but Ven does not think that this is the best plan because that will not treat the cancer problem.

• Ven will talk to the radiologist to see if a further CT scan would be helpful, but if abscesses are not drainable there's no point in doing a CT scan.

• Ven is happy to continue with antibiotics, but a time will come when no more will work. The main problem with long term antibiotics is the side effect of diarrhoea and vomiting.

• When there is a high temperature, they will treat it with paracetamol and naproxen.

• While on antibiotics, there is no chance of going home.

Notes Friday 5th May 2017.

• Talk with Ven, notes taken from memory after he left.

• Yesterday's CT scan showed that the large abscess had grown, and there are several smaller abscesses.

• The scan also showed there is a large clot in the inferior vena cava.

• Because of the blood clot, she is receiving blood thinners. These are much stronger than she had previously, and side effects may lead to bleeding, in particular nose, bowel, possibly she will be sick and find blood.

• Ven does not particularly want to replace the stents, nor to drain the larger abscess. Either procedure would be painfully invasive, and there is no guarantee that these procedures would help with the infection.

• Ven questioned on whether we wanted to continue the antibiotic treatment to deal with temperature spikes or to use morphine and/or other drugs to mask the symptoms. My personal feeling was to continue using the antibiotics in the 5-day courses up to the point when they don't work any more.

• Ven also asked whether she wanted to die in hospital or at home. Our consensus was probably in hospital.

• Ven asked if we wanted his opinion on her prognosis, we said yes. He said she probably had weeks to live rather than days or months.

Notes Monday 8 May 2017

• Ven agreed to stop antibiotics today. See how she goes until a temperature spike, then manage with paracetamol and naproxen.

• Review in 24 to 48 hours about going home - proper support to be put into place in terms of medication and help.

• Antibiotics can be used again if she chooses.

• Ven noted that she wants to be readmitted when she can no longer manage at home.

• She confirmed that the anti-clotting medicine is not causing a problem (nose bleeds and the like).

Notes Monday 12 May 2017

• Ven came into the room at 10:45.

• we shouldn't take her temperature unless she is really unwell. A temperature of 37.8 is not anything to worry about.

• Must keep taking paracetamol 4 times a day and Naproxene 2 times a day.

• Telephone 111 if you are concerned, telephone 999 in an emergency.

• If there is a problem with temperature you can decide at the time whether to have antibiotics which would mean coming into A&E and admission.

• If re-admitted, say that you are known to the Macmillan unit.

Message from daughter:

• Well there we are. I brushed your hair for you and put a clean tissue in your hand. You looked beautiful as always, this morning. Absolute privilege to be with you today and have you as my mummy always. Good night. Love xKx

I've never thought of myself as an emotional person. I enjoy seeing/doing/meeting, but have no need to enthuse. I see terrible events on the news, come across situations that are upsetting, but I don't get wound up about them. I've had losses of people I know, friends, some non-immediate family, my mother (I've not seen my father for probably 60 years). Yes, I've been sad, and seeing others in their grief has upset me. Politics and religion certainly can make me angry (one reason why I like this forum [politics and religion are banned subjects]), but I can easily deal with these. Yes, I've yelled in my helmet at perceived attempts to kill me on the road, but I forget these in any emotional sense in seconds.

• Grief. Loneliness. Sadness. Fear. Inadequacy. Guilt. Others I can't find words for. All these merging into each other, in no particular order or relative significance.

• Grief for the obvious reason; I've lost my partner, friend, companion, confidant, helper, advisor, lover, homemaker (as she always called herself), nurse, boss, servant - all of these things and more. And, as is often the case, the whole is so much more than the sum of the parts.

• Loneliness is obvious, she is no longer there. We've spent time apart before, she would go off to some embroidery class for a week or so, I would be left at home. Or I would go away on a motorcycling trip, usually with others, but without her. However, I always knew she was there. When possible we would usually talk daily, on the phone or by email. Now, she isn't here, nor anywhere else. I find this loneliness strange. When out on my own, particularly on the bike, I like lonely places, bleak moors, Scottish highlands. Now, lonely and bleak have taken on a whole new meaning. I feel a huge void. No longer will she say to me, "Come on, we're going shopping". I hate shopping, but I loved being with her. No longer will she walk past my chair and flick me on my ear - yes, it hurt, but from her that was perfectly ok. No longer will she snuggle up to me in bed on a cold night. Or, if I was really lucky, on a not-so-cold night.

• Sadness. Because I miss her. Because of what we haven't done yet, we'd plenty of plans for what we would do, where we would go. We'd already booked to got to America in November, including going to the Grand Canyon. Had to cancel that when we knew she was very ill. There was plenty more we would have done. Sadness that she will never be with me again. Sadness that I never told her how much I loved her. Maybe it was because, until now, I never realised how much I loved her.

• Fear. Strange. I've really nothing to be afraid of, but I am. Afraid of being without her for the rest of my life, of making wrong decisions because she isn't there to say what I should do (I originally wrote "what we should do", had to change it), of being unable to cope. Even though I know that I will cope, that life will go on, that I am in no way the only person to go through this.

• Inadequacy. I can't help our daughter with the grandchildren like she could, I can't give advice to our son and daughter like she could. I can't look after the house and garden like she could, I can't prepare meals like she could, I can't entertain like she could. And, of course, sorting all the legal stuff is well outside of what I am comfortable doing.

• Guilt. In all sorts of ways. For being selfish in my grief. For feeling sorry for myself. For not supporting our children as I should. For not thinking about the feelings of her family and friends as I should. For not looking after her as well as I might have during her illness. For not being a better husband to her during all our years of marriage. That really hurts, there is no way I can make anything up to her.

• Curiously, no bitterness. It's nobody's fault that she's gone. The medical profession did what they could for her, but were candid in that, right from the start, they knew they couldn't cure her. It was just the one chance in several thousand that she got the disease, from then on it was just a matter of time.

• That's enough rambling.