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.

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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….

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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.

Theperfectpair

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

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The hardest one yet….

I did a post a while back about my latest fundraiser and this follows on from that.

I’m really excited about ‘The Perfect Pair’ as it is going to be an amazing wine tasting evening and rather than just being with a few nibbles, our guests are going to get a Prosecco reception, amuse bouches, a scrummy lamb shank main, a cheese tasting board and some chocolates!

TheperfectpairSomehow though, it doesn’t seem to be pulling in the ticket sales as fast as when I did events like my Glitz and Glamour Ball, so I thought I’d write out to any followers on my blog who might be interested in supporting Myeloma UK. I still have a few tables that I’d really like to sell…..every full table raises £100 for the charity and with the amazing auction prizes that we have, the more ‘bums on seats’ that we have, the more likely we are to raise loads of money for my lovely Myeloma UK. If you would like to come, whether it is just one of you, or a full table, we would love to meet you and have you with us! Or if you aren’t able to make it, perhaps you could encourage your support group, or family or friends to think about it?

The evening should be a lot of fun….by the night we should have a musician as you arrive, and we already have a professional photographer to take those special photos of you with your friends. In addition, we have a fabulous table magician who will be entertaining you throughout the night.

But, of course, the main attraction are the wines that are being brought to you from Tim at Nickolls and Perks, a specialist wine and whisky merchant in Stourbridge. He will be taking you through some different pairings as you eat and challenging you a little about the ‘usual’ pairs. You will definitely leave having found out some interesting facts about wine and food!

I’d love to sell out this event….so if you would like to come, take a look at the website (www.theperfectpair2017.wordpress.com) and get in touch! You can buy tickets in pairs or as tables of 10…..or if you come direct to me, I can work most things out!

Oh, and don’t forget to look at the amazing auction prizes that we already have for our guests to bid on…..with more to come!!

I’d like to have people in the room more than anything, but if you can’t come and would like to make a donation instead, please visit www.justgiving.com/fundraising/theperfectpair.

Thanks and I hope you’re inspired to come along and join in on a fab night!

Deb x

 

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