Over Half Way

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

12 thoughts on “Over Half Way

  1. Well done Dave. An honest and reflective diary of a tougher few weeks but still with sense of humour in tact. You helped us all have a good family holiday at Centre Parcs so brill! It’s good to think by the end of April you will be free of chemo and most of its side effects with energy gradually returning. You have certainly done well for Alison,Joshua and Erin as well as your wider family. Just go with the body feelings again over the next few weeks. Our love xx

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  2. Thank you for the update and keep fighting Dave – you already know that you have so many people supporting you in different ways…there is a light at the end of the tunnel so keep focused on that!! Take care.

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  3. Good on ya Dave…… Keep on keeping on….. Your “Over half way” is most inspiring and must serve as encouragement to those on the same journey….
    Cheers. John

    Liked by 1 person

  4. Prayers continue for you and your family Dave. I am in awe of your courage and the way in which you are and have handled this journey – especially with consideration evident to your wife and kids.

    Liked by 1 person

  5. Your blogs continue to be amazing, Dave. Keep it up! We expect nothing less!
    Love and best wishes, Kelly and Dave

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  6. Hi Dave and Ali,
    Thanks for your latest blog, make really good reading. It is amazing what you have been able to achieve although I guess that the Chemo is not at all pleasant …. sounds dreadful!
    I have been in India for the week and with my time with International Needs coming to a close my jet setting days may well be drawing to an end as well, apart from the occasional holiday of course! Won’t miss all the waiting around in airports. I got 5 hours to wait in Dubai! A. Olive stayed in home, I know she would hate India and I have literally been in meetings all day everyday… honest, it would have been expensive for her to come. I am sitting at Bangalore airport waiting for a plane to Dubai and then on to London Gatwick. I hope to land at 7.00am and go straight to London for Bethan’s wedding at 2.30pm. we’ll see how it works out.
    It’s been hot here about 32 so I shall feel it when I get back home.
    We fully intend to stop of on one of our trips to see you when we visit Dan and Kate this summer we’ll let you know when we are coming through and hopefully we can arrange it. Your Dad is coming to stay with us week after Easter so it will be good to catch up with him and here all the family news.

    Sign off now but just wanted you to know that we are thinking of you and praying for you as yo go through the latest NHS treatment.

    Lots of Love to you both and the kids.

    Love
    Peter & Olive
    xxx

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  7. Good to know that you are nearing the end of the chemo. You are still being prayed for at Frontline Healing rooms. Maria Eagle ( Garston MP) has not replied but good to hear that an MP did raise the issue in the House and that awareness is increasing.

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  8. Hi Dave,

    I’ve just come across your blog, having just entered the world of meso with my dad having been diagnosed with the disease just a few weeks ago. He has just had chemo 1 and as we are all venturing into the unknown, your blog is really helpful. It’s also confirming to know that ought people are walking a similar path and that we are not alone. Dad is also at Wythenshawe and I see that’s where you go too for chemo etc.

    Keep up the fight and keep blogging, it’s a real help to other sufferers and their families.

    I’ll also be writing to my mp to support the campaign for more funding which is so badly needed.

    All power to your elbow.

    Steve

    Liked by 1 person

    1. Hi Steve, Really sorry to hear about your dad, but thank you for getting in touch. Unfortunately you are not alone, but the positive out of that is we can help and support each other through it. I’m a week after 3rd Chemo and had a tough few days, but your message has given me a boost. If my blog helps one other person I will be happy. If you friend me on Facebook I can put you in touch with others where we shares stories, ask each other questions. I’m David Staley on Facebook.

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  9. Hi Dave and Ali.
    Keep going Dave, your blogs and positivity are astonishing. As always we keep praying. With love xx

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  10. Hi Dave, great blog and never mind about doing everything possible to beat this, you’ve already gone over and above that. Just keep being inspirational. We’re thinking about you at work. Catch you soon.

    Liked by 1 person

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