Sitting having my final Chemo and looking forward so much to being treatment free (hopefully!) for a while. Once the next 2 weeks – the worst of the side effects – are out of the way we will hopefully be able to start to get back to a ‘new kind’ of ‘normal’. I want to build my fitness levels back up, spend more time with the kids and as a family and return to work (once the Specialists give me the go-ahead, and I feel fit enough!). It was a bit scary today as I have been very breathless so I had a quick check up with my oncologist and X-ray before we could begin. Reassuring in the end as all looked ok, but always makes you nervous when chemo ‘routine’ changes!
Chemo cycle 3 was the toughest one yet. Nausea kicked in on the actual chemo day and continued to day 6. The ringing in my left ear (tinnitus -not the wife’s nagging – honest!) this time was more prominent. I really struggled to enjoy any drink and didn’t seem to be drinking enough. Whilst everyone else was freezing, I was boiling hot in T shirt and shorts!! Previously after about day 5, I’ve got gradually better but by day 7-8 fatigue really kicked in and I felt I was getting worse. I had no motivation or energy to do anything at all – even get up. I was also feeling very sick but in a different way and by day 8, I was very very sick. Afterwards I felt slightly better but rang the ever so helpful meso team. They said not to worry, it would be a build of the chemo inside but also gave me steroids for my fatigue.
I never knew steroids could be so good!! Ali had purposefully planned a few little things over the 4 day Easter break to keep us busy and do things altogether. Thursday night I still felt rotten and were thinking we would have to cancel & it would be a long 4 days for Ali& the kids. But Friday morning I took the steroids and instantly felt better with plenty of energy! ‘Good Friday’ had a new meaning for me after 10 days of feeling rubbish!!! We then had a lovely 4days as a family and with fab friends too. Yes I was very tired and I could only manage half days activity but it was quality time doing everyday family stuff which previously we had taken very much for granted.
I continued to improve then from a chemo perspective and just as I should be starting to enjoy my brief week of semi-respite between sessions, I had extremely painful sciatica. I typically try and enjoy a few school drop offs/ pick ups to help Ali & see real life again but I was in agony and not sleeping either. Unfortunately all I could take was paracetamol and my Physio was helpful but couldn’t do too much due to chemo – argh!! So I rested again and have not done much – very frustrating. Following the conversation with my Oncologist today, I will have a MRI scan now too just to rule out anything else!
So today I am back at chemo for session 4. Not well timed as it’s the start of 2 weeks school holiday for us, so Ali’s parents & brother et al are kindly looking after the kids for us this week, and Liverpool family the second week. Normally, although we miss them, it’s lovely to have a few days respite from their boundless energy but this time it’s strange already. They really do keep you going, distracting you and almost forcing you to get on with things positively. Therefore we weren’t expecting it but Ali & I have both been more emotional this time. Also, perhaps it’s a relief that after 6 months of sheer madness and being thrown into a whole new world of life with mesothelioma of hospital appointments, decisions, 2 operations and chemo we are now poised again on the Unknown. Whilst having treatment, I at least feel I am doing something to fight this disease but potentially we will have a break from that new kind of normal for us and we have to learn another new kind of normal living but with a terminal disease.
However we remain very positive and we have further appointments and checks up to come still this month and next back down in Leicester in May.
The continued amazing support from friends and family is incredible. Meals being cooked for us, kids being looked after, friends and family keeping our spirits up, listening and talking with us honestly helps significantly. It sounds a cliche but all makes a huge difference in helping us. It’s still makes us emotional at how generous and thoughtful everyone is and how fortunate we truly are to have everyone onboard with us – thank you so very much.
lots of love Ali & Dave xx