All Mixed Up

Well life has been pretty mixed over the past few weeks.

On a personal level, I am pleased to report that I have now been well with no cough or cold for nearly a week (well only very small remnants of my original one!!). It must be time for the next one to kick in now…lol! I sincerely hope not though and am hoping that the warmer weather will bring with it a period where we can just enjoy being a family and spending some healthy time together! I have had a horrid pain in my armpit/ shoulder, but I am pretty sure that this is muscular, self-prescribed some nice strong tramadol and nurofen (not meant to have this but was told I could for 24 hours!) and seem to have seen that clear substantially….so all good there really.

The Ball continues to move on, although it really is a hard slog. We are chuffed to pieces that we now have a sponsor – Autostyling UK (www.autostylingUK.co.uk) which has meant that we no longer have to worry about the cost of getting raffle tickets printed, envelopes, stamps, etc. However, we still don’t have a major prize for the raffle and I still need loads more smaller prizes! If anyone out there has a contact to someone who might provide a TV or something like that, or a fantastic experience etc, then please let me know. We might even be able to contribute towards the prize if it was needed. In return, we can offer advertising on Facebook, twitter, our website, our Event Programme and for the top 3 prizes, on the raffle tickets!! I can also try to get it into any press releases that we do a little nearer to the time! Who could refuse that (apart from the hundreds of companies I’ve already approached!!). And if you are thinking of coming along (and we would love to have you there), don’t forget that the tickets go up from £45 to £49.50 after the 31st May. So take a look at www.glitzandglamourball.co.uk where you can order tickets and see some of the prizes to date!

But the reason for my mixed up status is that I had some really sad news yesterday. I found out that a lady who I have met a few times, who was a fellow Myeloma patient, passed away yesterday morning. She was always so positive about how myeloma affected her life, and felt that the allo transplant that she had in November ( a donor transplant), was just a stepping stone to a second nice long remission time. And sadly it wasn’t to be the case. It has hit me, and many of my myeloma friends, very hard as it came out of the blue. Whilst we knew she had been ill, we had heard last week that she was coming out of hospital. It is far to ‘deja vu’ of another lady that we lost a couple of years back. I am obviously really sad for her family and what they must be going through at the moment. It must be heartbreaking to lose someone no matter what, but it must be even harder when you had expected many more years ahead of you. And as I am sure I have said before, from a very selfish perspective, it reminds me of what this damned cancer does to us all in the end. I don’t want to die soon, I want to be around for many, many years. I hope that will be the case too, but the reality is none of us know when our time is going to be up.

So yesterday I felt a real mix of emotions. Part of me wanted to cancel the ball, stop spending every waking hour worrying about it, and instead focus on my family and enjoying time doing things that I really want to do. But the other part of me feels like I have to keep going, that I owe it to Penny and her family, and to all the other families that have lost members to myeloma, and to my family, to do all I can to raise money so that they get closer to finding a cure, or at the very least, a better way of prolonging life for patients. And even if it isn’t me that it helps, hopefully that money will help patients in the future. So, the ball WILL go on. But please think if you can help me. Even if just by seeing if your family and friends can donate a bottle or two, or a box of chocolates. And if you can’t do that, can you help on the night? I don’t have much control over how this cancer progresses for me, or for others, but I can raise money…..and so can you if you really want to help. Every little thing will make a difference. Thank you.

Sniff’s, snuffles and coughs.

So, part of life with myeloma looks like it is going to include being regularly ill. Gutting. Somehow I need to find a way to turn this into a positive…very open to suggestions on this one as I’m struggling to find the good in feeling permanently rubbish! I have worked out that I have had about 3 weeks where I haven’t been ill since the beginning of December and I can promise you, even if it is just a bit of a snotty nose, it is VERY VERY draining!

So, we’ve just had the Easter holidays. It all started well and we had a lovely day out at Black Park, a day with my godson and his sister, and then we headed into London with some of the kids school friends to visit the science museum. All good. Until we got there when my slight sniffle turned into Mount Etna, my cough wouldn’t give up, and I had the energy of a dead frog!! And there I have been for the past week! Yuck. And to top it all my poor little girl was sick on the Thursday for nearly 48 hours over the Easter weekend, and just as we thought we were turning a corner, my little boy was sick last night. I feel so sorry for them when they’re so young, as they don’t understand the sickness, and they certainly don’t understand why they’re not allowed to do anything for 48 hours afterwards!!!

Anyway, enough of the moaning. I did get some fantastic news in the early hours of this morning whilst nursing Sam in his room….my sister is coming back to the UK (from Beijing) for my Glitz and Glamour Ball in November!!! I am so very very pleased! Apparently Nick and another sister already knew and they were all trying to keep it a secret, but it is hard to do that with the person who is organising the whole thing!!!

The ball itself is coming along slowly but surely. I get a couple of raffle prizes each week…need to up that rate a bit but it’s all good!! We haven’t done so well on the sponsorship side of things…I think money is really tight out there. We do have one potential sponsor (still ironing out some details but will be revealed all being well, very soon!) and we’re hoping we will get another one too. If we can get some small sponsors for the rest of the event too, e.g the main course, entertainment etc, that would be great too…..so if any of you know some companies that want some good PR and are up for helping a VERY worthwhile charity (Myeloma UK!), please let me know. Other than that, I’m just grafting on with searching for raffle and auction prizes. It’s not easy as not many of the bigger companies will help these days – you need contacts for everything!!! But friends and family are helping me lots and we’re having all sorts of things donated from perfume, to bottles of wine/ champagne/ to tickets for the theatre. I would ideally like to get over 200 prizes so if you can help at all, please shout. I’m even happy to take unwanted presents etc if they are in good as new condition.

So, I just need to make sure that I’m not ill in the run up to the ball – probably means having everything fully organised by the end of September so I can rest in October….hmm, chances of that?????

 

Loving the Sunshine

Wow, isn’t it amazing how some sunshine can make all the difference to your take on life. After 5 or 6 days of it now, I feel significantly more positive and seem to walk around with much more of a smile on my face which is great.

We had a busy weekend catching up with family and friends. Whilst it’s sometimes sad not to be at home able to get things straight, it was lovely in that it gave me a chance to rest a bit, not have to cook, and be able to just chill out. I had an awful night of coughing last night, but then slept till nearly midday today (with a slight gap in the middle to get the kids ready for school!), followed by 2 hours of reading in bed. Lazy….absolutely! But totally blissful and I feel much better for it.

It has been really nice to have a bit of a break from the ball, although I have to say, I’m totally inspired with it at the moment after a VERY successful Friday. I had managed to get myself an invite to the Handy Croissant Networking group up at Handy Cross, in High Wycombe. The idea is that it was a guest session, but that everyone there, guests and members, pitch for 60 seconds, and at the end get referrals. It works brilliantly, and I have to say that I keep thinking of how some of the businesses there could really help people I know. But better than that, was the fact that loads of the people there were really keen to help me and the ball. I was pretty gobsmacked as I’d thought beforehand that I’d be pleased if I got one person interested in helping. And I was SO SO SO nervous. I really don’t like public speaking at all, so standing up in front of 30+ professionals who I thought could be really disinterested, was turning my stomach upside down.

But they couldn’t have been nicer. They even gave a little clap when I sat down….made me cry of course! But more importantly, I have had quite a few of them offer to help/ offer raffle prizes/ auction prizes and one of the companies is even considering whether they can help with the sponsorship side of things. Wow. I’ve also been asked to a couple more similar breakfast meetings so I’ll definitely try to get to those as, like I had hoped, they get me access to people who normally wouldn’t talk to me if I walked into their offices. Hopefully some of the promises will come good too As an aside, if any of you in the HW area are thinking about networking, I would definitely recommend you taking a look at www.handycroissant.com.

Right better go….need to go and tolerate the sauna conditions at the kids swimming lesson now!!

Crap on a Crutch!!

Haha…I love the phrase ‘crap on a crutch’….apparently one of Homer Simpsons’s, but I picked it up in the first two pages of a book by Kate Carr that was recommended to me after my second to last post. It’s how she described living with cancer. None of this….’it makes me a better person’, or ‘my life is whole again’ or ‘it is the best thing that happened to me’. Yes, most of us who have to go through this, make the best we can out of a bloody rubbish situation, but it can’t be said that had I been given the choice of living with myeloma (and getting the small benefit of having reassessed my life), or not living with it, that I would have chosen the former. And to be honest, anyone who says that they would, I am sure, is living in some form of denial. But that’s just my view

The book I have read is called ‘It’s not like that, actually’ and is the most poignant book I have read on cancer. Nearly everything she wrote about, made me nod in agreement. It makes no attempt to tell you how you should live your life, doesn’t suggest that if you don’t juice everything you see that grows in the ground you will die earlier, and definitely goes against the whole concept that I have brought it on myself through my busy life, stressful existence, smoking when I was younger etc. Kate Carr talks about people’s attitude to you when they know you have cancer, and yes, every single one of the things she has had suggested to her as to WHY she got cancer, have been suggested to me in some way or another….even if the people doing it were trying to do it subtly. It’s amazing how people don’t realise that it’s totally unhelpful. What would I gain even if I did know what had caused the myeloma? Hmmm, let me see, a big feeling of guilt. And I can tell you this now, I feel guilty enough about the fact my husband and two children won’t have the life ahead of them that they had expected. I don’t need other people making that worse.

Anyway, the book was great for me in that I came away from it feeling less alone. I’m not sure if it was good or bad that I spent the whole time reading it, sobbing my eyes out. And it certainly wasn’t good when I was reading it at the hospital and blubbing in front of everyone! lol! I think there is a definite time and place for a book like this. I still feel pretty isolated at the moment. I don’t really know how to change that. It’s so hard to know whether to live life thinking I’ve got years ahead of me, or whether if I do that and the cancer comes back next year, whether I’ll regret my choice.

But one thing I have realised is that I have allowed myeloma to consume most of my life. And I need to change that. It hasn’t done it in a wholly negative way, and I have gained loads from doing the fundraising that I have done, and am doing, and from supporting new myeloma patients for Myeloma UK. But I have realised this week that perhaps by doing all of that, I can never quite step away from it.

So I have made quite a big decision this week. I have decided that up until the ball on the 10th November, I will throw everything into fundraising and doing whatever I can for MUK. But once the ball has finished and I have wrapped it up (Christmas?), that will be it. I will pull away from it all for a couple of years and find other ways of keeping myself busy. I’m thinking of maybe trying to do charity fundraising outside of cancer charities. I can’t imagine being able to get a job that easily that is paid but that fits around the kids. And that is really important to me.

So to all of you who aren’t sure about supporting the ball as it’s just another fundraising initiative from me, please see it as the last time I will ask you to help in such an outright way. Obviously I’d love it if you continued to support MUK, but I won’t be doing things that mean I’m constantly asking for money.

The other major decision I have made this week is that I think we need some support. It’s amazing how hard it is to find that. I spoke to Macmillan today because I can’t get a GP appointment till the middle of next week. But Macmillan can’t really help either. It seems a bit harsh that not only do we have all the general costs associated with living with cancer (petrol to the hospital, parking, food, and that’s all on a good day!), but then if you want any help, it is made difficult to get it unless you are prepared to pay for it. I know not everything can be free…..we are lucky to get the NHS treatment we get….maybe I should stop moaning! But I think that as a family we need some support in knowing how to move forwards with living under the umbrella of a cancer diagnosis. At the moment, I just seem to be making everybody around me sad and I don’t want to do that.

 

 

Thank you.

I just wanted to post something quickly to say thank you to all of you who read my last post and either commented on my blog, fb page, or messaged me.

With this damned cancer, I am so lucky to have such a fantastic family around me, and such great caring friends…..both new and old friends. And it is having that support around me that really keeps me going at times like this when everything is tough.

I will get through this next bit….I am confident in that. Just bear with me while I get there.

Love you all……………….

Feeling lost

I haven’t written for a while….largely because I have been really chocca trying to get on with things. But the last week or so have been really tough and I’m really feeling lost and don’t really know why or how to cope with it all.

I don’t seem as able to cope with things since the summer and I find that all so frustrating. When I first got told it was time to start treatment, it was on the basis that my life would go back to ‘normal’ afterwards, but that just hasn’t happened. To everyone around me, things are fine again, life is hunky dorey, and I should be happy…..but I just don’t feel quite like that. I go through phases where I can cope….and then bang, it all seems to come tumbling down. And not always for any good reason. Recently, just trying to redo our bedroom has all seemed far too much. In the past I’d have thrived on this, but this time I just can’t cope. I can’t multitask. So trying to do the room, help at school, keep in touch with friends, and organise a ball has all just got on top of me. And I can’t deal with the fact that I can’t find what I want. I do nothing else all day, so feel it is down to me to find what we want for the room and when I can’t, I just feel like a total failure. And what makes it worse, is that I know it is only me that feels like this. Not Nick. He is brilliant and just wants me to be happy.

It’s not straightforward I know. At the moment I’m particularly sad as one of the guys from our ‘Under 50′ site, died over the weekend. I always find it hard when something like this happens as it brings home just how real my myeloma is and just what might happen to me. I’d just felt back on track mentally, and it has sort of brought everything crashing around me. I hope to dear god that my remission will last many years, and I have been living life thinking this, but when people die or relapse, you realise that what you wish for in life doesn’t always come good. I can’t stop thinking about her at the moment and I didn’t know her more than to write to. It just makes me feel so, so sad. God it’s all so rubbish.

Things are hard work these days. Nick thinks that part of it is that I have to learn to deal with being in remission. I feel like I should feel lucky to be in remission. There are people I know who have relapsed already, and god knows how they’d feel reading this – probably thinking that I should thank my lucky stars. But what do you do? I seem to be fine for a while and then things just build up and get on top of me. I don’t sit there thinking ‘It’s the myeloma’, or ‘I’m so unlucky’, but most of the issues we have these days come back to the fact I don’t really know whether I’m coming or going these days. I don’t know whether I have 6 months ahead of me, or 6 years. How do you live your life on those terms. With 2 kids, I can’t just go ‘sod life’ and do what I want. I still have the things I have to do everyday. And we still have the financial obligations. I want to go back to work if I’m going to be well for a long time, but not if I relapse this year or next. I want to enjoy the kids and have special time with them, but don’t want them to become spoilt or think that we can do that year after year. But I hate the idea with everything that I will assume/hope that life will be ok for ages, and that if I relapse I’ll look back and wonder why I didn’t take the opportunities when I had them.

Somehow with all of this I still feel obligated to so many people. Like I can’t let people down. Luckily my oldest friends are being really good…and I am very grateful to have people who I know in the main, take me for who I am. Now. But to so many people around, I feel I have to put on a bit of a show. Maybe we all do in life. It just really stresses me out now as I feel the conflict like I never did before. I want to be selfish and put Nick and the family first and foremost (and not care what the wider family and friends think). But I can’t do that. It’s just not me. I worry too much what people will think of me…or how little they’ll think of me. It frustrates Nick to pieces…..he just wants me to be happy again.

So, the question is how to get that back. I think I am happy when I’m busy…I feel like I’ve got it all under control. But then something seems to break me very quickly and I collapse. I don’t feel sad most of the time, but I think Nick is worried that I’m not very happy with my lot. I suppose it’s not really surprising but it must be so hard for him. How do you deal with it if you think the person you live with hates their life. Which I don’t. Not most of the time. But I do find it tough. And conflicting.

God, quite a self-indulgent post. But I really needed to write some of what is going through my head down. And hey, this is for me more than anyone else too.

More wine needed I think…….

 

Time to think

It’s been a funny few weeks with a real mix of emotions.

Overall I feel like it’s been quite a good few weeks….strange really as I’ve had a week with a pulled muscle so bad I would put it on a par with labour (yes that bad!). It involved the compulsory trip to A&E which seems to come with any illness I get….while doctors once used to just tell me to go home and rest if I complained about anything, now they have to send me to get checked out! Better safe than sorry, but it can be quite frustrating and a little bit scary too. But as soon as an embolism had been ruled out, I was pretty confident that it was just a pulled muscle/ trapped nerve, and sure enough, 3 days later, it disappeared.

But something that has really affected me is that a lovely online friend of mine with MM is losing his wife to a really sudden cancer diagnosis. I don’t know them that well, but I have been in correspondence with him since the early days of my diagnosis (he has asymptomatic myeloma). They have had so many things go wrong for them in the past couple of years that this is just heartbreaking to hear about. He is such a lovely guy and I get the feeling that they are just a loving family. I wish I could do more to help them. It seems so unfair, but these things always are to the people involved.

Another friend who had her transplant is about to come out of hospital. And that made me more aware of how lucky I was when I went in. She ended up with pneumonia while she was in there and it sounds like it was a very close thing. It’s tough for everyone who goes through a stem cell transplant, but when you realise just HOW bad it can get, you realise how easy you had it yourself. So, all in all, I’m feeling like a pretty lucky person at the moment (in-between the sad moments!!! lol!)

It seems to put other things into perspective, and at the moment, I’m finding it a little hard to concentrate on the ball and processing the information for that. We are very close to sending out all the information now. I’m just hoping desperately that we can get some good sponsors for the event…..I’ll be cold calling every business I can think of in a couple of weeks time!!

Anyway, it’s half term at the moment and I’ve been busy doing stuff with the kiddies which has been nice. One of my lovely sisters and her husband offered to have the kids for a weekend so tomorrow we’re off to London…..48 hours of adult time together should be lovely and is definitely much needed. I’m hoping to get tickets for Phantom of the Opera too which would be amazing as we’ve never seen it.