Just reflecting on the last 3.5 weeks – The weekend before the last Chemo session we all went to centre parcs to celebrate Ali’s Dads 70th. It had been booked prior to diagnosis and although I was dubious about leaving the ‘security’ of home comforts it gave us all the break we needed – family fun time – the perfect medicine! I had to stay away from the swimming pool each day (due to high risk of infection) which was hard as the best thing is seeing the kids having so much fun on the rapids/slides (never mind me enjoying then too!), but holiday therapy is one I would recommend – pure escapism.
Chemo day arrived and went very quickly. I had visitors throughout the day which is a massive help and keeps us both going. From chemo 1, I knew what to expect and with extra strength anti-sickness drugs that made me sleep, the nausea was easier to manage. Day 4 after a late shower (my laziest & worst day of finally getting up at 9pm), I noticed a rash on my chest, back & stomach. We were concerned if this was a reaction to chemo – you get a long list of ‘watch outs ‘ on discharge. A call to the Ward resulted in advice to go to A&E. However as I wasn’t feeling unwell or the rash wasn’t itchy we decided to leave it. The thought of A&E & rearranging childcare 10pm on a Friday night did not appeal. I slept, ali was anxious but advice from a kind neighbour as a retired GP on Saturday morning reassured us nothing was wrong. I took some photos to show the oncologist, we monitored it & it turns out one of the drugs Pemetrexed could cause a rash.
Day 5 onwards the nausea started to improve and it certainly helped eating my way through it. Daily walks continued and really helped, whether it’s a quick bit of fresh air to the end of the road or building back up again to 20 minutes walks.
Day 7 onwards, it was great to have family and friends visiting to keep me company, it is such a massive help & I was up for it. Before all the treatment I would never think sitting & talking makes you feel tired, it does but it’s well worth it!
What has hit me more this time is the tiredness and a total lack of energy – hence the lack of a blog for a long while!! The Oncologist & nurses advise that the more sessions of chemo you have, the more the drug builds up in your body and therefore the more tired/fatigue you are & this was certainly the case. This certainly took it out of Ali too with doing everything.
Day 14, finally feeling bit better, I was able to start doing school drop off & we had a review with our Oncologist who advised that I will have 4 sessions and the last one will be on the 5th April. This was a real boost to think we will soon be half way & we have an end date – it can’t come quick enough! It’s been a long winter from biopsy in October, surgery November & December & now chemo!! We’ve certainly had a good tour & dosage of hospitals, appointments, waiting rooms etc!! Ali & I have had so much time together!!
Depending on how my symptoms go after the 3rd one they may change my dosage of drugs or give me another drug all-together. I am currently having Pemetrexed & Cisplatin and the main symptoms I’m experiencing are fatigue, tiredness, nausea, and tinnitus (ringing in my right ear). The tinnitus can be long term and worst case lead to loss of some hearing (maybe a blessing not hearing my good lady nagging!!!), but they will monitor. The oncologist also confirmed that my recent CT scan shows no tumours, which we were expecting & hoping as they were all taken out, but good to know. Another scan will be done in 2/3 months to measure the impact of the chemo & hopefully to see no growth!
The real positive part from the chemo is that I haven’t lost my hair, eyebrows etc. Thus, especially to the kids I still look like Daddy which is great. It is hard on them, and after sleeping one day, Josh said when will you wake up Daddy, but they are both still doing very well for us & at least the chemo calendar has worked very well with me being well enough to see both of their school assemblies. Erin & Ali have also been unwell & a huge fear is me picking up their germs, so it’s extra bed washing etc etc (our house has never been so clean!!) but thankfully all be it the symptoms of chemo, I’ve been fine.
Thank you to everyone for writing to their MP, it is having an impact and responses are coming in. I’m yet to receive one from our local MP – very disappointing despite so many of you locally also writing to her, but I have chased up! One MP has spoken in the House of Commons and referred to one of our letters – yeah!. I was very honoured to be invited to the House of Commons to talk about life with meso to raise awareness but unfortunately it clashes with my Chemo and I will not able to attend, hopefully there will be another time as this would have been great. I have also just been interviewed by a journalist in the Sunday Times/Daily Mail to raise awareness, therefore watch this space……
My blog is having an impact and currently with over 10,600 views from 10 blogs which is amazing. Thank you for all your continued support which is truly amazing. I wish I could thank you all personally for the generous food rotas, visits to keep my spirits up & relieve Ali, kiddi care, kids taxi, our parents endlessly helping us etc. We are so very grateful and words can’t describe what it means to us.
I’m now sitting at Wythenshaw hospital having my 3rd Chemo and know in just over a month I will have finished this Chemo round and be over the worst side effects – fantastic!. I cannot wait to be treatment free (for a while!), so we can start to do ‘normal’ things. I am also due an appointment with my Surgeon & Mesothelioma specialist Mr Waller on 10th May. A decision will be taken on whether Radiotherapy is required, but what I’m hearing is that this is at least not as bad as Chemo. If I have to have this,it would be a relief as Chemo side effects aren’t nice and I can fully understand why people say no more. It totally saps your energy.
On Sunday the sun was beaming, clear blue skies (yes up here in Manchester even!) so we wanted to take the kids out for a nice walk. However, after all the chaos of wellies on etc I could only manage a 25 minute slow walk. Very very frustrating!! But what keeps me going is the amazing support of my wife,kids, family & friends. I want to be able to say I have done everything possible to beat this. What also gives me hope and strength is the amount of trials, research generally in cancer and the potential new treatments. With our campaign for more funding for meso, who knows what’s round the corner, but let’s just hope a cure is found for everyone.
Lots of love to you all Dave & Ali x