John:
On top of two hospital visits in the last month the last week, since returning from leamington, has been pretty stressful.
26th August - Monday
Monday was a failed attempt to get the crack in the sunroof fixed on the car – Rest and Be Thankful was shut due to an accident, then on the alternative route the ferry queue was horrendous. I would have missed the appointment by the time I got there by 2 hours. So, after two hours fruitless driving I went home and went to bed all afternoon. I managed two meal drinks and a whole can of soup and kept my fluids up but it's difficult. I spoke to Sheila, from MacMillan, who recommended taking Metaclopromide to try and ease sickness and prevent being sick.
27th August - Tuesday
Awful day. I woke early and headed off to the QE Hospital in Glasgow, an hour and a half away, for a PICC line insertion. Previously we'd had some difficulties but managed last time on the left hand side. So today they tried on the left arm, about halfway between my elbow and shoulder. They tried with ultrasound then I was wheeled into theatre for x-ray / fluoroscopy. They were on me for between 1 ½ and 2 hours. It was hell, mainly because lying flat on my back made me feel sick and towards the end I was sick. I had a cup of tea and left after another 20 minutes but felt dog rough all the way home. Once home I went to bed from 3-5pm and managed to drink less than 1 litre and no meal drinks all day.
28th August - Wednesday
We did a little bit in the garden and tidied up the garage for an hour. The tree surgeon guys came to take the tops off all the really tall trees to try and keep them managable and let some more light into the garden. I had a small piece of bread at lunchtime then felt awful whilst at Colin and Sue’s house later. I threw up when we got home at about 4pm then slept a few hours. I went to bed early at 9pm and slept well although I tried to be sick again to get rid of the nausea but there wasn’t anything to be sick on.
29th August - Thursday
New plan is to have a Hickman line put in for the chemo, which has now been delayed until next week. This requires a blood test to check my clotting capability at Dunoon hospital, so that was Thursday morning gone. I went to bed on and off from 1pm to 5pm, I wanted to be awake for Liz in the evening.
The last few days have been pretty bad. Friday (30th August) I went to the GP to ask for help (pain relief, sickness relief, mental health). I’ve lost count the number of times I’ve been sick the last week despite having a liquid diet (meal drinks, soup, isotonic fluids) and only taking small portions (maximum 200ml every two hours). Problems seem to build-up during the day resulting in me being sick in the evenings. Then Saturday and Sunday I was completely knocked out and rested literally all day both days. I was feeling exhausted, light headed and faint, and couldn't stay awake.
In desperation Liz called the Community Nurse team on Sunday and thankfully it was Jennifer on duty who knows me very well. She suggested Liz call the Palliative Care Team as they will have all my treatment history and more expertise in cancer care. They were very good and requested a visit from the out of hours GP. The doctor came to see me Sunday at about 2pm and put me on antibiotics as my lungs sounded like there was a probable chest infection, which has been on the verge for about two months now as I've had a terrible chesty cough all that time. My blood saturation was low at 94%, which may not seem to be that low, but anything below 95% makes you feel rough, coupled with low calorie and fluid intake resulting in being exhausted.
Dr Hallam, the GP at the surgery, is trying to help with a number of recommendations including sub-cutaneous injections of Metoclopramide and steroids via a pump as my intestines are inflamed and probably not taking up the oral medications very well. The main thing is to try and reduce the sickness so that I can get more nutrition and fluids in and be less tired out by the constant feeling of sickness and throwing up.
2nd September - Monday
Amber drove me to Grantnaval hospital today, Monday, for the Hickman line to be inserted. It’s a very different procedure to the PICC line. The tube is inserted through a vein in the neck down to the heart then secured under the skin and down for a few inches before exiting at about the third rib. The procedure lasts about 40 minutes (or it did with me) and usually it is on the right, but they chose to go on my left for some medical reason (bad veins?). There are some weird side effects during the procedure – heart flutter is the main one – and it was certainly a more intrusive a procedure than I was anticipating, including being under a paper tent for most of it!
3rd September - Tuesday
The medical team arrived promptly, as promised, this morning to set up the injection and pump routine, which will need daily attention. First thing is to see whether they have a positive impact, then think about how to manage this more intense regime (eg. self administration).
Liz: this is John's mock 'FFS' look! He's feeling a lot better today, despite looking a little pale.
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