Since my last blog and prior to Chemo on the 22nd Jan, life for the 4 of us was about trying to get back into a normal routine (whatever ‘normal’ is!). I enjoyed doing some ‘normal’ stuff we had previously taken for granted like taking the kids to school, swimming lessons, football training& matches and continuing with my daily walks in between the sleeps! Ali was back at work in normal routine and doing an exceptional job of keeping the family going as well as balancing ‘2’ full time jobs – her newly promoted one & her old one until her replacement started. A few wobbles were had but to be expected.
On the 6th Jan it was back to the world of appointments & this was to meet with our Oncologist to understand the next big stage of my treatment plan – the chemo! So since then, I’ve had to take folic acid tablets to replace the iron in my body that the chemo will remove. Whether it’s a coincidence, the colder weather or my body still healing, but they have given me constant burping ever since, and unfortunately made me sick a few times. Hence for 10 days I had pain around my diagraphm. As this wasn’t getting any better I phoned my very helpful contacts back at Leicester hospital, whom advised me they weren’t concerned as I was showing no other symptoms, but to get an X-ray to be safe. Within 2 hrs of phoning the Meso nurse in our local Wythenshaw hospital, I went & had the X-ray and was back home. Leicester called me back the following day to say Mr Waller & Roco (Senior registrar) had looked at it and all was good. Nothing to worry about and the empty lung space was still filling up well. What a prompt service by the NHS between locations – everyone was superb.
The week leading up to Chemo was all about keeping occupied and getting prepared. I asked for tips from other Meso patients who had been through chemo and thank you to all whom replied. We are now stocked up on ginger biscuits, mouthwash, flat Coke,Ginger ale, ginger tea, some cancer beating superfoods and anti/sickness tablets! I did at this stage stay away from the Wheatgrass etc! It was very emotional as we read through all the booklets, advice, potential side effects, what do we tell the kids and it brought it all back about why I’m having to have this. For reference the kids know Daddy is going to hospital to help his 1 lung, but we haven’t used the actual words chemo or cancer – your discretion is still much appreciated. We constantly debate whether this is right or wrong but it currently feels the right thing to do.
The ‘night before, pre – treatment’ ritual that I have started, continued with a steak for me and a family meal out which I enjoyed! Last Friday the Day of Chemo came and went very quickly. I was hooked up on various drips for over 7 hours but I was looked after superbly by all the nurses. Visits from my good mate Steve, Emma and friends who work at the hospital all kept us going – a huge thank you. Ali even enjoyed a surprise courtesy quick reflexology session for carers and then a pub lunch out in posh Hale Barns expertly diverted by her fantastic friend Emma. They are talking about writing a good pub guide whilst travelling the country attending appointments! Meanwhile, I have an NHS tuna sandwich!
It’s always a bit scary when you return home from hospital & Friday night was a bit like that for Ali & Emma – I was supposed to be taking my temperature but it keep registering me as 35 degrees so we gave up & decided I was ok! Meanwhile an expensive thermometer has been purchased!!
After interrupted sleep due to all the fluids, Saturday and Sunday I was very tired, managed a very short walk and forced myself to eat. Ali & the kids kept me going.
Monday & Tuesday were the worst. I went into ‘Chemo Coma’. It hit me like a ton of bricks, I didn’t expect to feel so tired, weak, ‘can’t be bothered’ and an awful sicky feeling. It was like a feeling of being on a constant roller coaster having that sicky, dizzy feeling that doesn’t go away. I didn’t want to talk to anyone and it felt worse than after my operation. I guess when you are in hospital you have the experts around you, to give you reassurance but at home it’s an unknown world. This upset Ali as she was ok with the symptoms but didn’t expect this from me & hadn’t seen me like this – not wanting to talk before.
Wednesday & Thursday Ali started to get her Dave back…. Doing little bits in the house, talking about plans – especially the house and I started to feel generally better.
It’s been a tough week, but like having operations, we now know at least what to expect and will be prepared. Although we still don’t know how ‘chemo 2’ will affect me, we will plan that I will be ‘out of it’ for 5/6 days and not to put too many expectations on myself or us. Thank you to all of you for supporting us still this week with very tasty dinners, childcare, taking Ali out for drinks, email distractions for me, phone calls etc etc!!
This was the first cycle of 4 or maybe 6 depending on how my body takes it! Next one is scheduled for 23rd Feb due to a family celebration on the weekend before.
My cousin Joel is running the London marathon and wanted to do it to support me. I was very honoured and its situations like this that the emotions flow! There are so many other deserving people and charities too. But currently funding for mesothelioma research is not what it should or needs to be, especially compared to other cancers and the fact asbestos is still everywhere! Hence, Joel is raising money for the British Lung foundation by running his first London marathon. The money will go directly to research for mesothelioma via this fantastic charity, therefore if you can support him via the link below, that would be very much appreciated.
Thank you very much for all your continued support. It honestly keeps us positive & strong & we feel so fortunate to know you all.
Dave & Ali X