Merry Christmas

So Nick and I have done our usual donation to Myeloma UK instead of sending Christmas cards to our friends – as much as I hate how few cards it means we receive these days, the fact that charities are receiving money has to be a good thing.

But we have still done our annual Christmas newsletter for anyone who would like to read it (and who gets Nick’s sense of humour….or lack of!)

So wishing you all a very Merry Christmas and a 2018 that is happy and healthy where possible.

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2017 Christmas Letter

 

 

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A month of new beginnings

I know I’ve been really quiet for some time now and it’s not for any reason other than that I have been mega busy!

This month has seen some quite major changes for me – moving into our new family home after two years in rented accommodation, and me making a final decision to start pushing forward with my new business. That along with Sam starting at secondary school and there is no way that anyone can accuse us of taking the easy road!

These changes have all been really exciting ones, but for those that know us, they haven’t been without an awful lot of thought, discussion and contemplation. Neither of us like to let my myeloma affect our lives massively, but when you are making big decisions, it has to come into the equation. Even now as I write this, I still keep my fingers slightly crossed that we have made the right choices with the direction that we have taken.

design.pngBuying a house that mortgages us up to the hilt was probably the most major decision. It is a fabulous house, that we can’t wait to turn into our home. But it will mean that Nick has the pressure of a large mortgage on him on top of everything else….and a 28 year one at that! That is the sort of thing that is hard enough normally, but we are just having to hope that nothing happens with my health to compromise his ability to work like he currently does. It is also a very old house that needs everything redecorating and some structural work too and in the back of our minds, the concern of whether this is good for me, or how we will do this if I relapse, is always there. BUT that said, it is SUCH an exciting opportunity that I think we would have always regretted it if we hadn’t given it a  go. I suppose in the back of my mind is that if things really got bad, we could always sell up.

At the same time as moving home, I have also started to push forward with my business concept – doing social media for small businesses who don’t have the time to do it themselves, but can’t afford the usual top rates that marketing companies often charge. I have finally realised that I don’t think a 35 hour a week role with a company works for me….I don’t know when I will be poorly and I hate letting people down! So this allows me to work for myself and pretty much schedule things to suit my family and my health. Perfect.

I’m very excited as it will allow us to do our renovations on the house quicker than we might otherwise achieve – I’ve already managed to pick up some extra clients since I made the decision and that is before I even have my own business pages set up! So now I’m working on the confidence piece. I don’t think I’d realised quite how much the myeloma plays in the back of my mind….making me doubt my ability to do anything. But luckily, I have a fab husband and wonderful family who have really encouraged me to push forward and have more faith in myself!

So, all in all, life is very exciting at the moment!

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The consequences of complacency

So recently I learnt about the consequences of complacency. And sadly it was my son that bore those consequences which broke my heart.

We have been so careful about what we have told the children about my myeloma over the years. They were only 2 and 4 when I first got my diagnosis, an age that was obviously too young to share any details with them. Only when I started treatment, did we tell them the first bits of information, and even then it was only that ‘mummy had poorly blood and needed some medicine to help make it a bit better’. We explained what that might look like and left it at that. They were so young that they didn’t really ask anything further and my treatment and the effect of it remained between Nick, me and our family and friends. They didn’t need to hear the figures we had read about 2-5 years life expectancy or listen to our concerns that I might not see them reach primary school .

As the years have moved on, my fundraising has obviously had an influence on them and they have been aware of myeloma. I’ll never forget the first time that they asked me whether myeloma was cancer and I had to say yes and explain that I was still doing well and that it had gone away because of the medicine that I’d had, but that I still had it. Our focus was always on how well I was despite having myeloma. We have always sworn that we will never lie to the children about my myeloma – if they ask us a question we answer it truthfully and the most we will do, is leave out information if we don’t think they’re ready to cope with it.

To try to make sure they didn’t hear too much or find out things without our knowledge, we always made sure that whilst I publicised my fundraising with friends and family, that I didn’t take it bigger in the early days. I turned down the idea of articles in papers etc because I didn’t want to risk them hearing the message I would have been giving to people. Anything that I did do, was away from High Wycombe where we lived, or didn’t open them up to seeing anything that made them realise that myeloma was an incurable, relapsing, remitting cancer.

But since we moved up to the Midlands, Nick and I made the decision that they knew enough for us to be able to publicise my fundraising a little more. They still didn’t know that information about myeloma, but they knew enough that we felt that me doing an article in the local paper wouldn’t be an issue….and that the reality was that they wouldn’t see that article anyway.

I got it so wrong though….when I saw the article it was online and so I didn’t really pay much attention to it apart from to use it to help promote my event in April. My sister kindly got a copy of the paper for me and I threw it down on one side in the study and thought nothing more of it. And then Sam came and found me last week and said that he had read the article when he was up before me one morning. And said that he hadn’t realised that I might have only had 2-5 years. He had tears  in his eyes and was so sad it broke my heart.

And so began the next stage of our education about myeloma for him. And as heart breaking as it has been to have to burden him with that information, I am so relieved that I was still able to tell him the truth about how it is and that for me, I don’t seem to have an aggressive form of the cancer. I was so honest with him that we were both teary at the end. I explained that he was too young before to worry him about it and that we would always answer his questions honestly. I explained that I was currently well despite being 8 years post diagnosis so those figures couldn’t be accurate for me. And I promised, at his request, to tell him when anything changed.

The hardest thing is to know whether to tell Rebecca now or whether to wait till she asks the question. She apparently hasn’t read the article so do we worry her about it all or let her continue in ignorance for as long as possible. Will she be cross her younger brother knew before her? Does that matter if it stops her concerns. She’s very different to Sam so at the moment our gut feeling is to leave it and deal with it as and when it comes up. God parenting is hard….even without having to deal with cancer!

I’ve talked to friends and family about what has happened and people have said not to beat myself up about it. I think they’re probably right – he was always going to find out at some point and so now hopefully he will feel he can talk to us about it along the way. And maybe, just maybe, it might make things easier for him to take on board, as and when I relapse.

Myeloma certainly impacts life when you least expect it!

 

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