Monthly Archives: November 2015

The night before…

Hi All

Having made the decision to go through with the full EPP – lung removal, it was wonderful to be contacted by other ‘Meso Warriors’ (America, Australia, U.K. ) via the blog. I never thought it would have the impact it has. They have had the same op, but 10&13 years ago….. Amazing stories, and like them I will still be writing these blogs in 10+ years time.(Sorry you maybe bored of them by then….)

Having made the decision, it was great to relax and celebrate turning the big 40! Ali booked us a meal at hawksmoor (best steak house in Manchester!), followed by nice surprise in the evening. Ali then booked for the 4 of us to go to langdale ( Lake District for the weekend). We had a great time, kids enjoyed swimming; we enjoyed 2 pub meals @Wainwrights & walks; and then a day with the staley clan in Ambleside. Thank you Ali you did truly spoil me.

Monday was all about getting ready for hospital visit, planning for the week ahead, and seeing friends. Thank you to everyone for kind offer of help, and we will be contacting you all to take you up on it (if we haven’t already….). It was also an emotional day as reality starts to hit home, and the fact I won’t be seeing the kids for 7-14 days. Thoughts of ” I may never see them again (due to high risk of surgery) has crossed our minds, but I remain positive this will not be the case, due to the trust in the surgeon and his team in Leicester, and the love, prayers & the support from every single one of you. This is helping us be so positive.

Today we dropped kids of at school who went in as normal, and it was us adults who were more emotional/worried. We have told the kids Daddy has a poorly lung, which the doctors are repairing. Joshua said to his Aunty ( who is a nurse!) “can you not do the operation, and Daddy stay at your house in Liverpool”! If only it was that simple….

This morning I also received 2 emails from Everton football club, one from Graham Stuart and the other Graeme Sharp. I was beaming, and the fact they had mentioned the blog made be very proud & emotional…..also on recovery I may get invited to meet the players…..Thank you to whoever has arranged this….

So I’m now enjoying a good meal (more steak and more beer), whilst writing this blog. We have met Dr Waller and his team this afternoon who have made us very relaxed (as can be) for tomorow. He advised he discussed my case at a Meso conference in Spain, with worldwide experts. Majority view was to go for full EPP. He advised Leicester is currently treating the most Meso patients worldwide!! I feel so lucky that I have had world specialists looking at my case, and at the best hospital. Due to the major surgery I will be having an epidural, along with any other strong drugs to numb the pain…”1000 X stronger than morphine” was said!!

So tomorrow I will be given sleeping tablets at 11am and go into theatre midday. The operation will be 3-4 hrs, and then into recovery. As a precaution I may go into intensive care, but more likely HDU. I should be out of recovery between 7-8pm ish!! I will not eat for 48 hrs, so hopefully by Saturday I will start to eat and have some movement…..Ali or my sister will update Facebook to let you know, and you will have another blog from me early next week.

So that’s me off now to look at the desert menu, drink with my gorgeous wife but once again, a massive thanks to you all for the love, support and prayers.

Dave & Ali X
Sent from my iPhone

Toughest Decision of my life

After a great weekend (school disco for adults, UNICEF game at old Trafford, time with family& friends) it was time for more appointments and calls with specialists to finalise treatment plans.

On Monday it was suggested to me that I should consider very carefully the operation that we had previously decided upon as my treatment plan. It was thought that surgery (removal of lining, diaphragm) was the best way forward but to be careful as to the extent. Thus, we have had to re-evaluate the options of, in addition to above: a) removing my left lung (EPP) and hopefully all the cancer or b)removing the cancer and repairing the lung (EPD). Medical literature states they have found no evidence that EPP benefits patients in the long term though.

Sleepless night on Monday, much discussion with Ali and family, and emails to specialists for more advice. After being certain on the way forward up until this point, this was very tough on us all! But I am glad this was raised with us, to ensure we have carefully evaluated our decision.

Tuesday involved speaking to Dr Waller and travelling to meet his excellent team in Leicester (People travel from all over Europe to see him- best in the business we’ve been told) and then straight to an appointment at the Alex (Manchester) with Professor Woodcock, who was the original Specialist we saw in April 2014. It was a long day but very informative!

EPP (lung removal) has not been done for over 12 months here. However, advice from Dr Waller and his team, who have always thought from experience EPP would be ideal for a select number of patients, is that I am this ‘select’ case: Young (don’t laugh!) to cope with major surgery, my right lung is fully functioning and that the Mesothelioma is at an early stage (we have had this now confirmed which is a positive)!

There are no guarantees, medical evidence, but from all the advice we feel it’s my best chance of obtaining any type of cure. By keeping the lung, this runs the risk of cancerous cells being left there or spreading, whilst with removing the lung there is more of a probability that they can get rid of it all. To summarise: “if I keep the lung I maybe able to play football with my mates, but not watch my kids for as long in their life or if I remove the lung, I won’t be able to play football but I maybe able to see my kids play for longer”. When put like this, removing the lung makes sense.

We are still to speak to a few specialists but I feel certain on the way forward. Even though Surgery has major risks (Mortality 1:20), after weighing everything up and seeking much advice, we feel it is the right decision. I want to be able to look in the mirror and say I gave it my best shot. I would always regret not removing the lung, if the cancer grew back in that area.

So the plan is to go into hospital on Tuesday 24th, with the operation on Wednesday 25th. I will be in Glenfield hospital (Leicester) for 7-10 days. First few days closely monitored on HDU. I believe in the surgeon and his team, I got an excellent feeling from them yesterday and from speaking with other Meso patients there as well.

For the operation I need to be fit and healthy. Thus, please don’t come near me if you have any bugs! Please remind me not to shake your hand or give you a cuddle and don’t be offended if I use hand gel immediately after shaking your hand! (Being the affectionate guy I am – this will be hard, already failed 3 times today!!!)

I am now looking forward to celebrating my 40th! Not sure what Ali has planned, but I’m sure I will enjoy it. ( No pressure Ali!)

 

Thanks for your continued support and offer of help. We are in the process of trying to plan practically what we need to do over the next few weeks, whilst trying to maintain normality for the kids. (We will tell them over the weekend that Daddy is going into hospital for an operation to make him better, they won’t be able to visit. We continue to appreciate your discreteness around the children). After hospital, recovery will be anything from 2-4 months, with chemo to most likely follow. Therefore, we will be calling on you all to help practically following your kind offers. Thank you in advance.

Keep the comments and support going, we cannot thank you all enough.

Lots of love
Dave & Ali

Ps: Ali will try her best next week to give an update via Facebook and or the blog.

Roller Coaster

What a few days it’s been!

We are both very positive people, but we do have our down times, which is expected in these circumstances.

Thoughts of: – Potentially kids not having a dad to support them growing up
– Ali being left on her own
– why me, when I hear there are only 2500 cases in the UK alone, and only a handful of them are my age. I have a better chance of winning the lottery!

But we take so much strength and support from all our friends and family. We have gifts of flowers, concert tickets, match tickets for UNICEF game, and tea being prepared for us. Texts offering all support, (we will be taking you up on them), being taken out for lunch, hugs at school gates, calls to check we are okay, It really does mean a lot.

Today Ali received an email from her Manager and the Global HR Exec, offering continued full support with anything she needs, from time away, to access to global experts in Cancer. One of whom (Global Chief Medical officer for QIAGEN) happened to be in Manchester today (Ali’s first day back onsite) , and his first visit to Manchester in 2 years. He said ” ali when I got the email, I just had to meet you, it’s more than co-incidence”. (Some would say God is at work). He cancelled important meetings to meet with Ali and has offered so much advice, and is looking and researching into all the various trials in the UK and recommending ones for us. He will help & advise every step of the way. One bit of advice from him – i can now go back to the full fat stuff, as I need to ensure I don’t loose weight- winner…..

I had Asbestos Victim support charity visit us today, and Jeff was fantastic. Giving us advice on what benefits we can claim for (I maybe able to get the next room in the house done if ali lets me!!!!) and how we can pursue a Civil claim through a panel of solicitors. It turns out a school friend of ours works for one of these solicitors and he has agreed to help us. We prefer to use people we know and I can do it over a pint (I have a good excuse for a pass out these days….). Jeff also advised the work they do, and I offered to share my blog, and in the new year will attend support groups and help where I can to support others.

Also today we had a lovely visit from the couple we swapped houses with. I text them, and they wanted to come and see me, as they have had a similar experience, it was very encouraging.

We now look forward to a few drinks at the school disco tomorrow night, with great friends and football activities on Saturday.

Next week consists of CT scan and pre/op in Leicester on Tuesday, followed by an appointment at the Alex with Professor Woodcock for his advice. Then let Birthday celebrations commence….

Thank you all very much. Enjoy the weekend…..

Dave & Ali xxxx

“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.” –Francis of Assisi

Let battle commence

Here goes for my first blog……

First of all a massive thankyou to everyone for all the support so far, it has been very overwhelming. With the support of family and friends I know we can overcome this battle…

Thankyou to the Gahagan’s for setting up and suggesting this blog. We will be writing updates on here as it is an easy way to keep everyone updated. Also if my story is shared and can help just one other person through a similar situation, I would be very happy.

Today we went to see Dr Waller who is one of the “Top surgeons in the UK if not the World” (quote from oncologist) for mesothelioma. He has carried out over 400 of these operations in the UK. He advised:
– 2 pathologists have said my biospy and CT scans are “compatable” with mesothelioma
– he has only treated a handful of cases with people my age or younger (positive!)
– mine is potentially stage 1, but could be stage 2 as symptoms could have started in 2013!
– Due to my young age and very healthy body (don’t laugh!) that he would recommend surgery to remove the lining between chest & lung, diaphragm (muscle to help you breathe- any medics please correct me if I’m wrong!), and also to remove my left lung.
– We have the option to keep the lung, and only remove the affected tissue, however he would recommend full removal to try and ensure cancer doesn’t grow back into the lung or spread. Amazingly recovery is quicker if you remove all the lung rather than part of it!
– The operation is pencilled in for Wednesday 25th November at Glenfield Leicester hospital. I will be in for 7-10 days (7 – I hope). Prior to that I need to go back for CT scans, and the surgeon is going to get one more opinion from a pathologist who deals with mesothelioma cases world-wide.
– He has had 2 cases out of 400 that have gone though the operation and it turns out it’s not mesothelioma. He has cases of people who have survived more than 5 years and one living 13 years. I am going to be one of his success stories, without a doubt …….

Today allows us to plan and focus on next steps. It has answered a lot of questions, and I feel at ease, and ready to do battle!

I feel very lucky to have the private medical cover through work, which allows me to get access to the best treatment very quickly. I know I am an unusual case, which is another positive as it gets my case reviewed by many, and they are going to throw the best treatment my way….

Your support and prayers are greatly appreciated, and from the bottom of our hearts we thank you. Please do continue, as together with your support, prayers and positivity, we can beat this…….

Lots of love
Dave & Ali

P.s Please feel free to leave comments, suggestions, ideas below. I am also more than happy for this to be shared.