Monthly Archives: January 2016

Chemo Coma

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

7500 hits in 36 Countries!!!

Happy New Year everyone, hope you all had a fantastic festive period.

At the end of 2015, I received a report that summarised the traffic to my blog since it started in November. By 31.12.15 it had received 7500 hits in 36 countries, with the most visits on 11th Nov with 1036! I was completed shocked, but very proud and honoured that so many of you are behind us, supporting and helping us to stay and positive. We certainly feel it…

We had a good Christmas Day at home with Ali’s parents – I could even taste and enjoy a hearty christmas dinner! Unfortunately, a trip to Liverpool on Boxing Day to see the Staley clan was cancelled due to quite a few of them having bugs. This got me down and very frustrated, especially when due to my illness it impacts seeing family, friends and upsetting the kids. I understand why I need to stay away from people with bugs but it doesn’t make it any easier! Some were able to visit us the day after and we then made a trip to Liverpool at the end of the holidays. A fantastic few days rest in Sutton Coldfield to see Ali’s parents, brother and family before celebrations at New Year.

Had a great time celebrating New Year with great friends, attending 2 house parties (afternoon & evening – thank you very much), meal out, drinking 5 beers & glass of red ( I think….) and staying up until 1am! I even managed to win (out of the adults) the ‘cereal box’ game- having to pick a cornflake box up with teeth off the floor without hands or knees touching the floor – obviously funny when you’ve drank and are entertaining kids!! After each round the box is made smaller…. I won’t mention any names, to embarrass those adults who were beaten by an invalid…haha…

Each day I have improved, increased my walking and I have gone over the 5k mark with 2 walks in one day, averaging 3.5k each day since I was discharged on 7th Dec! I have also started to do small tasks around the house and some school drop offs much to Alison’s relief! As long as I rest in-between tasks to help the body recover, Im fine. I remember the advice “listen to your body, and rest when you need to”. Now 6 weeks post op, I am amazed how well I am doing. Next short term aim is to do 5k in one go! (walk then run – don’t laugh!!!) I still have a cough and occasional nightly sweats but they are not as bad as they were.

Emotionally it can be hard at times, we have our down times, but these are outweighed by a lot more ‘ups’. Its been hard getting back into a ‘normal’ routine this week, whatever our new ‘normal’ is!! As a good friend said even a normal healthy person has a down day, we are all allowed them. I remember my dad saying emotionally, it was harder for him than my mum when she had Cancer. This is true, and for Ali not only is she having to see me go through all the surgery, recovery, cheering me up on down days, looking after the kids, having a full time job, it is the emotional strain of one day thinking she maybe left on her own with the kids. We are positive people and we firmly tell ourselves we have to live for the moment, but occasionally these thoughts do cross our minds. However, we only have to look at some of the inspirational stories (we’ve found a Meso Warrior 17 years on from diagnosis this week in Arizona) and that instantly gives us hope & belief. 17 year meso warrior survivor Chris’s advice to patients: “Just have faith and keep going, stay positive and stay strong.” This is us! We also have plenty of new positives which we are typically taken for granted – Ali & I have never had so much time recently to talk to each other face to face in hospitals/waiting rooms etc, we worked out that in all our working careers neither of us had had the full 2 weeks off at Christmas to relax and spend time with family and friends, plus we got out every day over the holiday for a family walk (this is a positive once the camaraderie of sorting out gloves, umbrellas, wellies etc etc is complete)!!!! Also, we only have to watch the news locally and abroad to know how truly fortunate we still are.

Oncologist appointment this week went well. Plan is to start on 22nd Jan at Wythenshaw hospital (just 20mins away luckily). It will be 4-6 cycles, every 3 weeks. Day 1 will entail a 7/8 hour day on the ward having the drugs administered via a drip, Day 15 checkup, Day 21 the cycle starts again. We are currently looking at the possibility of a drug in addition to standard chemo, it’s called Bevacizumab. It has been proven recently to have better results than just standard chemo. Disappointingly, it is not available on NHS or private currently, however it maybe going through appropriate approvals as we speak, due to successful trials. What we don’t know either is whether the drug will be specifically for Mesothelioma or other types of Cancer. Luckily we know people who have contacts whom are investigating to see what the latest position is. I will keep you updated if chemo plans change!

In this last week, I have emailed and had a response from Lord David Alton (former MP) who is trying to push for a bill to go through that will make insurance companies put more money towards Mesothelioma research. Unfortunately, Mesotheliomas is on a sharp rise especially here in the UK, but currently it is only £430 per death, where a lot of other cancers are in their £1000’s. David Alton has put me in touch with the Bristish Lung Foundation, who have since read my blog and have advised it is a ‘very powerful story’. I have offered to help in their funding campaign and we are going to speak next week to discuss ideas! One of my other targets this year is to do a fundraising event…..Watch this space…

Thank you for all your continued support, generosity, humour, love, it is all very much appreciated by us both

Dave & Ali xxx