John:
We had been anxiously awaiting feedback from histology at the hospital - we didn't want to waste any more time before any potential treatment options - the cancer was growing at its own rate with no intervention. Histology (what kind of cancer we were dealing with) was finally available for the MDT (multi-disciplinary team) meeting on 11th December. We got the first insight that chemo was going to be offered when Sheila, the MacMillan nurse, called in that afternoon. This was quickly followed up by a call from the hospital, and we were given a consultation with the oncology consultant 14th December.
So, over the water to the hospital, we set out to see the oncology (cancer) consultant and discuss details of treatment options. The appointment was thorough - about an hour - and ensured that we clearly understood what was on offer (treatment with FOLFOXIRI), what it might do (manage the cancer and buy more time), what it might not do (50% chance it does nothing) and side effects (ranging from mild irritations to death). It's amazing the depth of questions that were put to me, and demonstrate how different people have different priorities in their journey - basically I wanted the best cocktail of drugs and any risk of complications like hair loss were of low priority. An amusing question was asked, which I heard as 'have you experienced any rectile disfunction' and I launched into strange experiences that (bottom) end, only to be corrected that the question was 'have you experienced any erectile disfunction'. Again - an odd question - sex not necessarily being the top priority, I would have thought for most people, but for those curious - I currently have no erectile dysfunction. I so wish when I was asked the question I'd turned to Liz and asked her if she had any complaints, missed opportunity!
I signed on the line accepting of the 'deal' as the only other option was 'no deal' ie. no active treatment. At the same time we also picked up some other tests - bloods and a comprehensive EGC to act as a baseline before treatment started.
Liz:
I listened patiently to the whole discussion - nothing was needed from me - but getting more and more nervous about all the possible side effects, yet accepting the possibility that John may go through all this for nothing. When John said yes to the treatment I was so relieved I cried (it's becoming a habit!) - I'm so grateful that he is up for the fight and so desperate for yet another miracle to be bestowed on him.
John:
There was and is no point discussing outcomes - it's a lottery, so every day, in the state I am, is a bonus, and will remain so. Ahead of chemo I needed a PICC (peripheral inserted central catheter) line installed on a semi-permanent basis (up to 3 months). Basically, 40cm of a very thin tube inserted, whilst being X-Rayed, from the crook of the elbow, up a vein ending up just above the heart. Don't really want to think about it too much! We were told we would get a call next Tuesday 19th with the time to attend for this to be done next Wednesday 20th. Chemo was scheduled to start Thursday 21st December subject to this PICC line, blood test results being good and me being physically present and alive.
Another medical appointment that week was with the stoma nurse as the stoma site was quite sore - each bag change seeming to show a deterioration and increase in redness and bleeding. A different bag was the recommendation, together with a belt to keep pressure on the bag onto the surface of the skin - much improved in the 3 weeks since this change!
Whilst we were that side of the Clyde we also picked Liz's sister, Jess, up from the station - she'd made her way up from Lincolnshire on the train for a visit, which was lovely despite the week of turmoil we had in store:
After the first half of December's lovely winter weather, it turned to a stormy, windy, rainy week. Storm Pia was due on John's first chemo day.
The week hadn't gone well in other areas so far either: Tuesday the car got a flat tyre and an engine fault which made us nervous it was going to let us down when we needed it most. We had also spent all day waiting for the call to tell us what time to come over for the PICC line insertion the following day, and to see if they could also do the chest CT at the same time. In the end we rang the hospital and were told that the doctor who would be doing it had been on leave and was still assessing his clinic list and we would fid out the following morning, first thing.
So on Wednesday, as we hadn't heard anything by 10am we took the decision to set off regardless - stress levels were peaked and we did not want to miss the appointment, whatever time it turned out to be! Seeing as we were making our way into Greenock yet again, we prioritised getting seen to by JLR roadside assistance while we were there, and were offered a courtesy car whilst ours went in. They were very accommodating - no hassle and it was a good move - the car wasn't driving right. The flat tyre had held with 'pump and go' and got us to Greenock, and we felt like someone up there was either trying to test our mettle to really want the chemo or sending us messages to not take it. Whilst we were there, knowing about the dodgy weather on the way, we did briefly discuss John staying that side in a hotel to ensure we didn't miss this critical milestone, but decided against it....
Wednesday to Thursday overnight it really was very stormy and when we got up at 6am, the power was off. No drama, and we were off by 6:30am after getting ready in the dark. Within 20 yards of leaving the home - tree across the road - which was moveable. Another 10 miles down the road - tree across the road with a 4x4 and chainsaw guy already in action. The ferry looked open - showing green status despite the weather. That should have helped us get to the hospital for 8am maybe 8:30am for the appointment at 9am. Just as we got to the ferry terminal however - the bollards were being put out - earlier ferries had run, but the operator took the view to cancel until a review at 10am. OK - no drama, plan B: take the A83 Rest and Be Thankful road - a longer way round but should get us to hospital 9:30am. We turned round and set off back that way, signs still showing it was open. Half way up though - stationary traffic and it didn't take long to find out that lorries (plural) had overturned at Butter Bridge/Loch Restil (it was shut for over 24 hours). At this point - options were 1: give up (no way, we wanted to get going), 2: go back to the ferry and await a decision around 10am (didn't have certainty), 3: take a further detour of at least and hour.
Option 3 it was. So after 4 hours 15 minutes driving, over 150 miles, we got to oncology at 10:45am and chemo could start in anger. We'd phoned the ward to let them know we were running late and they were very accommodating, and we even managed to get in the baseline chest CT scan requested by the consultant.
Liz:
Seeing as the treatment room at the hospital was quite small and had four patients in situ Jess and I went to check out new kitchens at Howdens, followed by lunch at a pub to pass some time. On the way back to find John my crown fell out - because we really needed yet another thing to worry about and organise! But that could, and would have to, wait until after Christmas.
John:
After a long day with the travel and the treatment, we left hospital about 4:30pm to get home, with my 48 hour pump in my natty little bum bag. John was feeling fine and managed a light meal before sensible bed time. We'd been given a lot of strong advice about watching out for post-chemo symptoms and acting quickly. After a few hours sleep, I woke with severe stomach cramps and abdominal pain. We decided to call it in to the 24hr chemo hotline (awesome, right?!) and based on 'yes/no' answers to a script an ambulance was on its way. Just as the call ended I was sick and within ten minutes felt significantly more comfortable, so I rang the helpline back and asked them to stand the ambulance down. Not an option - it was out of their hands now and within 45 minutes (BTW we live 40 minutes from the nearest hospital....) amazingly the guys were at the door all tooled up for a major drama. They were a little surprised to be greeted at the door by the patient! Very understanding and non judgemental - they gave John a full assessment and we elected to chill out, monitor overnight. All part of the journey!
As we pass New Year's Day, I've so much to be grateful for - I've been home for 5 weeks. Against an initial diagnosis of 7 days, I'm about 4 weeks beyond that, I've started chemotherapy, I'm generally not in pain or distress and I'm here with Liz, the cats. Family and friends are beating a path to our door and sending such lovely messages. I can eat and drink pretty much what I want in moderation. Pain does come and go in all sorts of ways, sometimes lasting minutes, other times for longer periods requiring a bit of morphine. As I now head into a second round of chemo, my resting heart rate is up around 90 and full/deep sleep is difficult to achieve. But I am getting through it relatively unscathed so far.
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