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!

 

Nothing is Forever – except a cancer diagnosis

Once you have been diagnosed with cancer, life changes forever. For you and for your family, it is unlikely that you will ever look on life in the same way. Sometimes that can be amazingly positive, and sometimes, sadly, it is soul destroyingly awful. Whether you get through treatment and survive, whether you get through treatment and relapse, one thing is true….a cancer diagnosis is one of the few things that is forever.

I think I would be right in saying that in general, Nick and I have been massively positive in how we have lived our lives since I was first diagnosed with myeloma in 2009. It was obviously a massive upheaval to our lives in the early days, and hugely scary to think that our children might not get many years with me. But, as we went through the treatment regime, we got stronger and stronger together. I think we learnt to accept the myeloma as part of our lives, and for me, I did my fundraising as a means of controlling it. And in the main, my myeloma is NOT my life….it is just that unfortunately it has a nasty way of getting away of my life when I don’t want it to.

I will always remember a strange part of the journey where I just wanted the treatment to start – I wanted an end to the ‘unknown’ and I thought that once I had my chemo and transplant and had recovered, that life would go back to normal. Little did I realise, that the ‘unknown’ never really disappears with myeloma, you never quite get to sit back and totally relax, especially when you are at hospital on a monthly basis for your maintenance therapy. But even without that, I would imagine us mm patients aren’t unique in the fact that the word cancer is always there, hidden, in the back of your mind and in the way you make decisions.

In fact, you end up living with a kind of guilt and frustration that are hard to put into words but I am going to try to.

I know, from the bottom of my heart, that I am REALLY lucky to still be here today to write this. I know, that when I was diagnosed 8 years ago, that I thought I would have gone by now. I know that I have said goodbye to too many myeloma friends that I have met on my journey, who have not had the positive response to their treatments, that I have had. I know that my life is pretty good when I take that all into account.

But I sit here writing this feeling nearly as sad as I have done in a long, long time. Why? I am ill again. Not badly ill, but ill enough to lay me up at home for a number of days (expected to be at least a week) and to make me dependent on Nick and the kids for everything. This comes on the back of looking after my son having the same thing for two weeks and at the same approximate time, breaking a bone in my foot for the 3rd time in 2 years.

The reason for these things? Well, my immunity is permanently low due to my maintenance therapy and my myeloma so I pick things up pretty easily. Whilst I am much more relaxed about being around people these days, I still rely on people to make sensible decisions about seeing me when they or their kids are ill…otherwise it can lay me up – and that isn’t fair on me or the family. And my breaks? Well, I still that they are due to the bisphosponates I was on for so many years….but I’m no expert.

The reason I thought I’d write is because I want to help people to understand how hard it is to live with cancer ‘under the surface’. To everyone around us, I am now pretty healthy…and I am in comparison. I look well. I smile (most of the time!). If people ask how I am, I rarely talk about the myeloma anymore. But behind it all, Nick, the kids and I, have to deal with so much more on an ongoing basis.

I am lucky to have the most supportive husband I could ask for. He drops everything when I am ill or hurt and makes sure he is there for me. But this time, I think it has hit us both emotionally and we are both exhausted from what this life means for us at times. I think we want to think life is normal again, but the reality is that ‘normal’ isn’t what it once used to be….and I don’t like the new normal that much. I’m someone who is active and on the go all the time, but if I do that now, it makes me ill and the family suffers. I’m not sure how it impacts the kids…..they don’t really talk about it, but I see them so concerned when I am laid up in bed with a temperature, again. I think they’re ok. I dearly hope they are.

Even with work I find it so frustrating. Given how much I have been ill/ injured in the last couple of years, I can’t think of many companies who would take on someone who worked like that. And if I take on a role that is too stressful, it makes me ill. So I’m trying to set up my own business doing social media and admin pieces for small businesses who don’t want to do their own….fingers crossed that doesn’t lead to more stress than is good for me. The reality is there is no ‘standard’ job out there for me that works though, so it is this or nothing….and that feels hard in itself.

And all of this is with the knowledge that my paraproteins are very slowly creeping upwards. They are so slow it will probably be a couple of years before anything needs looking at, but unless you are living with that, it is unlikely that you can begin to understand how that plays around in your head with every decision that you make. One minute I’m talking about us in our retirement together and the next we’re having a reality check and discussing the alternative if we knew we only had another ten years together……..an eye opening discussion I can promise you…which limits Nick massively, as well as me.

But if you ask me next week how things are, I’ll likely tell you it’s good, smile and carry on….

Final Call

So I thought I’d do a final call on my blog for ‘The Perfect Pair‘, my wine tasting in aid of Myeloma UK…..just in case any of you haven’t been following me (aka avoiding me!) on Facebook.

I’m excited about this event, as it should be a lot of fun. It’s a wine tasting with Nickolls & Perks, (an independent wine merchant in Stourbridge), at Hogarths Stone Manor….a beautiful hotel in the West Midlands….the one where we got married in 2002! But it isn’t just that….we have a Prosecco reception to start, a five star Jazz musician playing in the background for our guests throughout the night, and then the wine tasting will be done alongside what will (nearly!) be a 3 course meal. I’ve popped the menu below as I think it looks lovely and I’m hoping if you’re still deciding whether to come or not, this might help!

But that isn’t all….we’ve also got a table magician, a photographer to grab some fantastic memories of the night and lastly, a fantastic auction with some really great ‘Money Can’t Buy’ auction lots – as well as some other great lots that have been donated but that might feel that little bit more affordable.

It’s taken a lot of work to organise this fundraiser as I’ve been without my previous ‘Glitz and Glamour’ team, but I know it will be another great evening. I’m still trying to sell the last few tables/ tickets so that we can raise as much money as is possible. So, if you fancy a good night out, why not come along. The hotel are even doing reduced rates for all of our guests that might be travelling that little bit further….or who just want to turn it into a night away!

I am especially grateful to Tim at Nickolls & Perks for helping with this event – he has not only agreed to do the wine tasting FOC, and to help keep the prices as low as he can get them from his suppliers (by writing to them all himself), but he has also been an amazing sounding board for me, has found me the musician, and generally listened to me witter on constantly about the event! Oh…and he’s also been my proof reader (blame him for any typo’s 😉 )But seriously, he’s been great and since I genuinely love N&P, I really wanted to give him a more personal shout out.

So, any of you who have been procrastinating about buying tickets, PLEASE have a think about doing it now – we would love to see you there. And if you can’t come, but would like to make a donation, you can do this at www.justgiving.com/fundraising/theperfectpair or if it is a prize you would like to do this, please just message me.

And one final thing, I’m still looking for a printer – just to do our Event Programme (a maximum of 50 copies of a 16 page A5 document) and perhaps a couple of pull up banners. If anyone knows anyone who might do it FOC or at a low cost, please get in touch!

THE PERFECT PAIR menu