One Day I'll Fly Away

When I started my blog, my sole purpose was to be honest with what was happening with me with regards my illness, in the hope that by doing so, I might help just one other person. 

I have spoken about my decision to come off medication and withdrawing from medical support. I have tried to look at the financial costs and implications of complimentary medication and supplements. I have explained the 'dark' feelings and an inability to have people close to me. 

The one thing I never intended to do with my blog, was to upset anyone. Unfortunately, I have found out this week that in writing my blog with such honesty, I have been upsetting my estranged daughter. I did not even know she could or would read them, after all, she does not follow me on any social media forum.

For that reason, I am taking the following decisions. I have cancelled all health appointments, I don't want to be timetabled and I will know myself when things are changing and will shout out for those I need at that time, in the hope they will be there. I know this will bitterly disappoint some people but it is far easier and less stressful for me to not be put under the microscope, so I am sorry. I know One Day I Will Fly Away and I am not trying to hide from it but knowing the when will just cause too much hurt and depression, especially as I am now at the end of my initial prognosis. I know my life has been extended because my best friend took the decision to move me to Hertfordshire at a time when I could barely make a decision for myself and  will love her forever for her intervention and her friendship.

My second big decision is to discontinue my blog from this point on. I am sorry again for those who have taken some comfort or level of understanding from it but the fact that my daughter is accessing it and it is causing her upset, is something that I, as a father can not deliberately do. 

I want to thank each and every one of you who has ever read and retweeted my blog. I could not have communicated with so many people and received so much support. I will still happily talk with anyone about the issues of living with a terminal illness, but this will be done in private. Just drop me a DM or send me a text or an email and I will come back to you 

David Lewis xxx

A guess is just that

Think it is only apt with today being World Cancer Awareness Day that I release this weeks blog. There are so many people out there who live with this disease now, have had to lose people to it in the past and are fearful of it for the future.

However, there is so much good research going on around the world that I hope this number becomes less and less, despite recent reports saying that more and more people will have cancer. One is a guess (the more bit) and guesses can be wrong.

Which brings me to me. We are now in February and in general, I am feeling pretty good. The pain level is still strong and I have to admit, I have allowed the doctor to prescribe a nerve inhibitor to see if that can bring an element of relief. Apart from that, the main thing is fatigue and I am having to force myself to rest and not feel to guilty about it.  Must admit, six months ago, I did not think I would see February, now my sights are on spring (small goals). The good thing will be that people wont have to wrap up so much and even more so if I can swing it to summer. Again, the original prognosis is really a best guess, so sorry if I am not going fast enough for some people.

Last thing on this bit is when it does happen and you get the funeral details, can I please say, no flowers. In fact, if anyone wants to make a lasting contribution, then please make a donation/commitment to harrisonsfund.org  I know it is not cancer related but it is a charity that I support and would like to think some of my friends will carry that on.

Away from the cancer still nothing from my daughter and I am coming to the conclusion that no matter what I or anyone else does, this is not going to change. Thank you to everyone who has supported me in my efforts in trying to get a relationship going again, it has been very much appreciated.

I have made a limited number of boxes of chocolates for Valentines Day and will take orders until the 9th February but I realise that not everyone celebrates this and I do believe it is far too commercial. That is not to say that I am not loving or romantic. Given the right circumstances and the right person :)

And an update on my ongoing battle with Interparcel and City Link. My MP and Trading Standards are taking the matter up. I am not expecting to win the battle but hope to cause a few injuries along the way.

I have also noticed this week that a lot of people who were always on twitter and up for a laugh and chat are missing. Where have you gone?? Come back xx

Sorry, not a long blog this time round, hope for something more interesting next week.

David xxx

My Friends, I Could Not Do Without You

I have been asked by a few people over the last couple of days as to how I manage, being on my own most of the time, saying that they would be the other way and surround themselves with friends all the time. It was a hard decision to make, I must admit, probably even harder than it was to make the decision to come off the mind numbing medication.

However, until you have been in the situation where you see a certain look in a friends eyes, not pity, not fear, not panic but something in between all of these, can you honestly make that decision. What you need are people who come in and out of your life, while getting on with their own. People who can be there for you when you really need them but treat you no differently just because you are having a bad day or the pain is a little worse.

One of the things my best friend thinks she wants, is the knowledge of what signs to look for if my condition worsens but I know, that once she is fully armed with that information, she will spend any of the time we get together, looking for these signs rather than just enjoying the friendship, having a laugh and putting the world to rights. I also don't want to be on some timetable, ignorance is bliss after all. My supposed consultant obviously feels the same, as the next available appointment is 18th March or I could go on a daily cancellation list. Um, the hospital is in Middlesex and they expect me to answer a telephone call and make my way down there. Don't think so!!

On the health front, I agreed to go back on muscle relaxants but after a few weeks I have decided to discontinue them, as my mind was starting to cloud again, muscles that I did not want to relax decided they would and my sleep patterns were awful. On the positive side, if it is the muscle relaxants that make me like that, I might be able to try pain killers on their own, something I will discuss.

Away from health, as many of you know, I have decided to make some Taste of Love Valentine chocolates, mainly to compensate the costs of replacing the damaged items by City Link, who admitted they were at fault but have said they will not compensate !! If you are interested in some of these totally unique chocolates, I need orders in by the 9th February. You get 16 handmade chocolates that taste of love plus 2 melting chocolates, filled with essential oils that, well, TASTE of LOVE :)

I have still had no contact with my daughter, not through want of trying on my part, but did see a recent photo on a family members facebook page, so if it is okay with you all, I will leave you with that, as the hope of some sort of reconciliation is still one of the main things that keep me going.

Another company that just does not care

As everyone who has bought my taste of  Christmas chocolates is aware, the reason for me knocking myself out has been to buy my daughter a final Christmas present and portrait, something she will be able to keep forever and something to help her with her exams (a laptop).  I would like to thank you from the bottom a dying father’s heart.

However, this has been seriously blighted due to the Courier company City Link and the middleman, Interparcel. I sent a large shipment with them, thinking they were one of the biggest names. Unfortunately, the goods were severly damaged in transit and I have had to use some of the monies raised to replace the goods damaged by City Link. To top it off, after having the parcel of 21 boxes of chocolates for almost a month, they tried to send some (8) of the boxes back to me in a plastic bag!!

Some of you may be aware that the chocolates were due to be received by Homeless Beanies, part of Inn Churches in Bradford and supported by the Archbishop of York.

Now neither company is willing to accept responsibility for this despite explaining to City Link and Interparcel about my illness and forwarding on to them the reasons. It would seem that City Link should rename themselves Grinch and Scrooge and I hope that all you small business out there that use them as your couriers of choice, will seriously reconsider this, giving their appalling customer service, never mind the fact that they damaged goods clearly labelled fragile.

I am sending this to the press as well, as this companies, City Link and Interparcel, have ruined my last ever Christmas and would rather be jobsworths than show a heart. Please remember this when you want to use a courier in future and if you would like to email the company yourselves, as people who have searched your own hearts in purchasing the chocolates in the first place

I am so sorry that I have had to write this and publish this but you have a very broken father who did nothing but try his best.

David Lewis

Sometimes it is good to go back

Some of you will have noticed that I have not put up a blog for the last two weeks. This has been a mixture of not really feeling up to it and the fact that I was not happy with the way my blogs came across on Wordpress, something that I changed when I linked it to the website. I have made the decision to go back to blogger, hope it is not too confusing for people but the idea in the first place was to get my blog out to as many people as possible and this, for me, is the best way of doing so.

It has been a very hard few days, firstly with the death of Roger Lloyd Pack (Trigger) of pancreatic cancer (something which was kept very quiet by his family). Here is one of the most recognisable actors of the last 20 years and I am sure everyone will have watched him in either Only Fools and Horses or Vicar of Dibley. It is a sad loss to the acting world and an even sadder one for his family.

Then we have the ongoing Coronation Street story, something that I have refused to watch, but on Monday we have the 'assisted suicide' culmination, a decision taken as Hayley does not want her loved ones to see the pain she would have been in if her character was to be shown living with the effects. I can truly understand that and know many people with terminal illness would choose to take this course of action. I have been there and I am sure I will revisit.

One of the main things I need to avoid is stress, as it will speed up my illness. try telling that to City Link and Interparcels, who between them managed to damage beyond repair, 21 boxes of chocolates that was going to Homeless Beanies. Neither company will accept that they are at fault, blaming each other, blaming Christmas, blaming ME !!! So much so, the senior manager at Interparcel freely admits that he has not done enough for his customer (me) and has no intention of doing so!!!! Apart from the financial implication to myself, as in I am having to replace all of these chocolates, the stress these two companies have caused is immense.

Add to that, yet another set of rejections from my daughter and you can quickly see that it has been a tough time.

However, there has many good things as well and this culminated today in finally meeting one of my best twitter friends and her husband. We had a lovely lunch out and the company was excellent. It is moments like this that make me realise just how much friends mean to me and that I could not have gone on for so long without their support.

A BIG THANK YOU

I need to give a big thank you to everyone who has either purchased or advertised and pushed my taste of Christmas Chocolates over the last six weeks.

I received a message from my daughter at 5.45 am to say enough, as she felt  I was making her out to be a charity case.

Everyone knows that I have worked hard to produce and sell these chocolates and charity did not come in to it.

I will continue to make and sell chocolates while I can and the profits made from them will be put in to a savings account to give to my daughter on her 16th Birthday on 26th February.

Again, thank you everyone

David
xx

Meeting with Angels along the way

A bit of a break from my normal blog this week, as I really want to spend the time talking about the launch of Homeless Beanies in Bradford last Thursday, which just so happened to coincide with my 'Hello/Goodbye' tour of lunches. (Wonder how that happened? :) )
From speaking with them in the development of their own unique chocolates, which I can now announce as vanilla and lime, and gob smackingly gorgeous, we decided to help with the launch, to have a Wine, Cheese and Chocolate evening, along with a smattering of art and health related stalls, all within a beautiful Bistro called Forsters in the City Centre.
I had arrived the day before, to help ensure that I was not trying to push too much in to one day, with the bus, taxi and two train journey it involved, and after a bit of a struggle and the fact it was getting dark, I gave in and got them to co come and find me. We went back to their office within the College, for a much needed coffee and to meet the team.
I was then hit with my first real surprise of the visit, a calender made up for Inn Churches, whose umbrella Homeless Beanies sits, was shown to me and the first page has a dedication from the heart, to ME. Me, I say. I have never ever felt so humbled by the thought and sentiment of something.
Spent the rest of the evening helping, Emma from Elaborate Designs, keep calm, as she was showing her art off the next day to the public for the first time.
Got up in the morning to howling winds and torrential rain and a message from Sarah Wearing to say she definitely could not make the lunch as her little one was poorly and of course, trains were cancelled. (Good job I was guided to travel the previous day).
I had a 9 am appointment with a women who puts together a CD for those dying, as a lasting message for my daughter, arranged by the lovely Juli from Homeless Beanies, so a taxi was phoned for and a brave driver, risked the journey to the college, past flying roof slates. I thought I was emotionally prepared for the experience of putting together the CD, with a selection of 6 songs, pertinent to myself and my daughter and me talking about nice things in between. However, after introducing the first song, I was on my fifth tissue of literally hundred I would need in those two hours.
On to lunch to try and compose myself. Met with Lacuna Raven and her hubby, Juli, Emma and Mad Hatter himself for what was a fun filled two and half hour lunch, with glorious food from Forsters Bistro and even better company.
Right, now for the main event. 70 guests and volunteers, all desperate to find out this unique flavour and to get stuck in to my taste of Christmas and the AnjulaDevi range as well. The crowd was split in to 2 and I completed my first set of tastings, with a member of the Forsters staff doing the wine and a chef doing the cheese. All went well and everyone loved the new ranges, with numerous enquiries to buy (in fact, the Homeless Beanies chocolates were in high demand).
Quick stock up of the trays and away we go with the second round. Had just finished the Christmas flavour when I get a tap on the shoulder from Juli, who is standing there with the Archbishop of York, who had insisted to come and meet me in person. Juli took over the next part of the tasting, while myself and the Archbishop spoke and then he asked if he could pray for me and with me, right there at the side of the tasting table!! I can honestly say that when he held on to me, I could feel the presence that comes with his Office, and yet again, I was truly humbled.
Prayer finished just in time for the tasting of the Homeless Beanies chocolates, the first of which went to the Archbishop. I can say that he loved them and actually came back for more a little later, along with the poses for photo's from the gathered press and the wonderful Ben from Homeless Beanies.

There is so much more to say about the event but I will have to save that, along with my usual health update til next week. Just want to finish off with a massive thank you to all the Volunteers, Forsters Bistro, my friends, Andy who helped throughout the whole event, the Archbishop and most importantly Juli, who made it all happen, a true angel xx