The last month has been truly awful. We only really feel able to write about it now due to an slight improvement in how John is doing.
Last time we visited the girls, one month ago, he was starting to go down hill. He had recently been in to hospital a couple of times due to vomiting and his stoma had pretty much stopped working, so an almost complete blockage was diagnosed. An MDT meeting was held (as per previous post) and the team reiterated that there were no more surgical options for him so a liquid only diet was prescribed. However, another course of chemo was offered, including a different drug to act against the blood supply to the tumours. The side effects are pretty scary, including internal bleeding along with the hair loss and pins and needles in the hands and feet.
Chemo was scheduled to start the following week, but the PICC line insertion failed and so the first round was delayed for a week while a Hickman line was arranged. However during the following week the vomiting continued and ramped up to every day or several times a day. This was miserable and also meant that the little amount of fluid John was managing to get down was not getting through and he began to lose weight quickly.
On the Friday he went to see our GP when his stomach ballooned up again, and she spent an hour with him trying to get to the bottom of all his symptoms and work out how best to tackle the difficulties he was having and get him through to chemo the following week.
Dr Hallum prescribed Metocloprimide to help the gut motility, and Levopromazine to try and prevent the nausea. She had a good think over the weekend and devised a strategy to try and help, based on how he got on with the new medications.
That weekend there was a dramatic change and he was so exhausted he could barely wake up and was clammy and hot. I called the out of hours palliative care team number and they sent the out of hours GP over on Sunday afternoon. She was very good. She checked him over and said he was slightly dehydrated, probably had a minor chest infection (he has had a cough for months so it was impossible to tell that it had changed), and his oxygen saturation was low. She put him on antibiotics and gave him an intramuscular anti-sickness injection because she suspected his gut wasn't absorbing the oral medications well enough and much of it was being vomited up. The next couple of days were much better and he was more awake and wasn't sick, which meant he could keep his fluids down and had a bit more energy.
On Monday Dr Hallum suggested we try administering the medications subcutaneously to bypass the dodgy gut, and added in steroids to try and reduce the swelling of the tumours and any gut inflammation. This meant that the district nurses had to pop in every morning to administer the meds through two subcutaneous venflon needles, one of which was on a 24 hour pump which had to be attached to his belt permanently. Things improved slightly and the regime was tweaked each day to try and perfect it. He suddenly seemed to have a bit of an appetite and tentatively ate some cheese, a cracker and tiny glass of wine. This was such a complete turn around that it brought a glimmer of hope to an otherwise heartbreaking time. Thursday was chemo day, starting easy with two of the original drugs from the last round to make sure he was ok. Over this week the stoma starting working again, back to normal, and John was able to eat again normally, although a little anxiously. He was up and about and feeling awake. He stopped taking the morphine and was more alert and coherent, having barely been able to complete a sentence just a few days previously, and completely incapable of making any decisions, even about what he might like for lunch.
There was another dip towards the middle of the following week and the GP came out in the evening to give him another anti-sickness jab and a drip to try and rehydrate him, but he developed horrendous hiccups (which also happened early on in his last round of chemo) and they were painful. One night they went on for six hours and meant he couldn't sleep. He tried everything from drinking cold water to breathing into a bag and nothing helped. Dr Hallum also added Lansoprazole to try and calm the raging indigestion and acid reflux which was another source of pain.
There were several times over this two weeks where he said he couldn't go on and he just wanted to be left alone. Whilst it is completely his choice I do feel like he needs to make that decision at a time when he isn't in a dip after a good morning when he had said that he felt well enough to have hope. Dr Hallum was amazing and managed to arrange a hospice stay for him to try and get on top of his symptoms by utilising their one:one care and ability to react quicker to changes in symptoms. The bed should have been ready on Friday, but then was delayed to Monday. However, apart from the hiccups and associated pain he was comparatively much better by Monday and things were looking up. He didn't want to go in as the staff had suggested one to two weeks. It felt like a huge chunk out of the time we have left, but we knew it was the right thing to do to make sure he was going to get some enjoyment out of what time he does have left, rather than being too tired to even go outside.
I dropped him off mid-morning on Monday and once we were there he felt much better about it. It was a lovely place, eight beds only and plenty of staff to really make sure that ever need was looked after. It is partly NHS funded and partly charity funded and the staff were incredible. In the end he had the room to himself for the three days he was there before they decided he was well enough to head home. His hiccups were sorted with a higher dose of steroids, the anti-sickness was moved to the evening and Lansoprazole was scheduled for half an hour before meals morning and evening. So, on my day off on Wednesday I went over to visit him and he took me out for lunch. It was a lovely restaurant called Scotts, overlooking the Clyde with a very chilled soundtrack on the stereo. I had a cocktail and the food was delicious. We then called in for a coffee, which was not good, but we were ready for a sit down along the walk back up hill to the hospice.
When we got back the doctor popped round again and agreed that we were good to be released that night and we joyously drove home. I was slightly nervous that the chemo the following day was going to knock him back but John was dead set on keeping to our planned trip to Leamington to see the girls again as we never know how many more trips we can manage. We should have been going to Isle of Skye this week, and we had the B&B all booked a few weeks ago, but when John started to get ill we cancelled it and decided to prioritise seeing family.
Chemo went fine, with the third drug being added in without incident, and improved by a visit from the lovely Hazel from the Beatson cancer centre to give John a foot massage to help his dry and numb feet. I had my own appointmnent at the same time, for an iron infusion as my iron levels were refusing to improve despite various messures over the years. It is now at the lowest it's ever been. We should see shortly whether it improves my tiredness, breathlessness and achy joints.
We headed off to Leamington, with John driving for the first time in almost a month. The next day he was exhausted, which is normal for the few days after chemo, so I am trying to keep him going, staying positive and hoping that he bounces back in a few days time.
Comments