Monthly Archives: April 2016

Final Chemo done & dusted (pardon the pun of ‘dust’!!!)

Fourth time round Chemo has been physically easier to manage. I think this is because we knew what to expect, there wasn’t any new symptoms and the Steroids helped massively (if I had only had them after each chemo for 7-10 days!)! I still suffered with the usual nausea, bad taste, ringing in the ears, tiredness, breathlessness and Alison winding me at all hours in the night, but because we knew what to expect it seemed ‘okay’ the fourth time round. I also believe the fact that I knew it was the last one, psychologically gave me a boost! The fact that I haven’t lost any hair throughout so I look like ‘Daddy’ is a real benefit especially for the kids.

Emotionally though it has been a tough few weeks for us both. I think that after 6 months of constant treatment (biopsy, lung removal, 4 chemo sessions) the body and mind needs a break. Also, this last treatment was at the start of the Easter holidays when we would normally have had been out and about with the kids enjoying time as a family. However, it is a massive relief knowing that for now I’m hopefully on a break from treatment, hospital appointments, drugs, needles, repeating my date of birth 1001 times etc and we can start to get back to some sort of normality. I can’t wait to be able to spend proper time with Ali & the kids, family and friends and have the energy to do activities with them. I just need to remember to pace myself. Recovery is not a sprint but a marathon!

My Oncologist (Dr Paul Taylor) advised that I will have a CT-scan in June and a follow up appointment on 6th July. They will assess whether the mesothelioma has disappeared for now and not re-grown – the very thought of this appointment though makes my stomach churn! Dr Taylor said that I need to let my body recover and to start to build the fitness levels back up. I would like at this stage to give a special thanks to Dr Taylor, Lorraine (Meso Specialist Nurse), Lesley & the team of nurses in Cecilia Ward, Wythenshawe hospital, whom have all looked after Ali and I so well during the Chemo treatment. They do fantastic work day in day out, have made the process as best as possible and are always there when you call them. Thank you very much.

Further next steps, is also an appointment with my surgeon (Mr Waller) on the 10th May in Leicester following my lung removal, so we will see what he advises. I also have had quite excruciating pain in my leg at times, but my physio is looking after me well and I have a MRI scan booked in early May but hopefully just to rule anything else out.

It is a huge relief that currently treatment is over, but now we need to prepare and manage the fact that we will need to go for tests every 3/6 months and then wait for results. Mentally preparing for this is the next challenge, but I feel fortunate to be able to have this break and that I will be having regular check ups, so if anything is wrong they will be able to identify it.

I feel very honoured that friends and family are fundraising on my behalf to help in the challenge and research against Mesothelioma & cancer. Whilst we appreciate there are so many very deserving charities, thank you so much for those of you whom have already kindly donated and if you haven’t, but are able to kindly donate, please see the attached 2 links for:

Joel Staley (Running London Marathon) for British Lung Foundation with funds going directly to Mesothelioma research
https://www.justgiving.com/Joel-Staley3

Roshan Daryanani (Climbing 6476m up Mera Peak in Nepal) for Macmillan Cancer – whom is currently as I type doing this amazing climb!
https://www.justgiving.com/summit6500

There are a further 3 events in July, for British Lung Foundation, Christies and Mesothelioma UK, so watch this space….

Thank you so very much for all your continued support, prayers, childcare, tasty meals, chemo buddies, friends re-arranging work etc to visit us, ironing help, car lifts, lovely messages, support to our family too it all means so very much to us both. We are very honoured to be surrounded by amazing family and friends.

Lots of love
Dave & Ali xx

Toughest One So Far

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