Changing Times

It’s been quite some time since I last posted – life has been really busy which is always a great sign….there was a time (and it was quite a long time!) where no matter what was going on in my life, I couldn’t help but worry about myeloma and what it meant for our family.

 

This year will be 9 years since my diagnosis. I still can’t believe that when I read it back. When I consider we’d initially read about a 2-5 year prognosis….and then thought things were good that this had improved to a 3-7 year one! And here I am, nearly 10 years on and being one of the lucky patients that has still only had one set of chemo and one Stem Cell Transplant. I almost feel like a fraud when I think about my initial fundraising messages that I gave to people. And I can’t begin to explain the guilt that you feel about surviving when good friends around you have long gone or are extremely ill.

 

This is the first post I have written in many months/ years where I won’t allow it to go to facebook though. The reason being that my daughter, now 13, is on facebook and probably doesn’t need to read all of my thoughts, fears and worries about myeloma. So, I’ve decided that I need to be more private about the situation to avoid her being unnecessarily concerned. She’s ever so private and would just worry in silence I think. And hopefully she doesn’t need to.

 

Those of you who have followed me over the years will know that Nick and I have always prided ourselves on being 100% honest with the children. None of that will change, but I don’t believe that the children reading things on a blog will help them to understand my situation as well as us sitting down and talking with them. I need the blog for me. And I suppose I just have to hope that they don’t stumble across it online. That said, Rebecca, Sam, if you do happen to start reading this, please let me know! Nothing is a secret! I know the day will come and I hope that it will give you another way to start conversations with us.

 

I suppose if I’m honest, the reason I am writing this now, is that I’m a little bit scared. My figures are starting to increase at a more regular rate than they had been. Only 3 months ago, my consultant had said he wasn’t worried about them as they were rising so slowly, that if it continued, he didn’t imagine me needing treatment for well over two years. It was like it was the kiss of death. Since then, they have gone up more in 2 months than the last 2 years. Still not really a huge amount, but enough to make Nick and I sit up and listen.

 

It’s amazing really. It feels like I have gone back to 2009/10 when we were constantly chasing figures to see whether they were high enough I would need treatment. The nerves are definitely highly strung and I am back to taking things more personally (please don’t take it personally if I get snappy at you!). My mind is going off track and I’m back to worrying about what we can and can’t plan for the future…..even though I know it’s far too early to be worrying about all of that.

 

Nick and I were walking the other week and it suddenly struck us both that the increase had started around the time we took on the new house and I started my business in earnest. The conversation stopped almost dead at this point when I realized that perhaps stress was my main cause of my myeloma levels rising. The first diagnosis came shortly after I first left the banking world, stressed and unable to cope with the level of pressure they put on me and two young children. Should I have picked up on this earlier? ‘Stress’ is a well known trigger but I suppose because I constantly put pressure on myself, I don’t always associate the two….my life is busy because I like that and I choose it to be so. I’ve loved doing my fundraising no matter how hard the work has been. But maybe there’s a difference when you choose something and know it can stop whenever you want if you need it to.

 

The reality is that I don’t feel I can (or want to!) give up my work – I’ve finally done something I’ve been talking about for years. And I don’t want to give up the house either – it really is a ‘forever’ home, no matter how much of that forever it takes us to complete it. So, I’m at a total loss as to what to do, to make life easier. I don’t want to be the mum that doesn’t let the kids have people back. I don’t want to give up my sport which I love. But is all of that totally selfish if it is what is making my myeloma worse? I really don’t know how to answer that question. I know that I can’t say no….but I don’t want to either L

 

Anyway, maybe I’m getting ahead of myself. There is no talk yet of treatment. It’s still that awful waiting game…the game that is always being played in the background, no matter how slowly, or how much you can shut the door in its face for a while. I’m sat here writing this just before I go into my next monthly appointment. Hopefully things are relatively stable this month and you won’t get another update from me for many more months!

 

Normal
0

false
false
false

EN-US
JA
X-NONE

/* Style Definitions */
table.MsoNormalTable
{mso-style-name:”Table Normal”;
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-parent:””;
mso-padding-alt:0cm 5.4pt 0cm 5.4pt;
mso-para-margin:0cm;
mso-para-margin-bottom:.0001pt;
mso-pagination:widow-orphan;
font-size:12.0pt;
font-family:Cambria;
mso-ascii-font-family:Cambria;
mso-ascii-theme-font:minor-latin;
mso-hansi-font-family:Cambria;
mso-hansi-theme-font:minor-latin;
mso-ansi-language:EN-US;}

So, it’s probably a bit clearer now why I didn’t want Rebecca reading this yet. This is too much information for a 13 year old, too early in the day. It’s my general ramblings and fears – and probably irrational ones at that – I’m sure many of my myeloma friends going through treatment would tell me to just enjoy the fact I’m not there yet (and they’d be right but it’s just difficult!)

Advertisements
Posted in general, illness, Myeloma | Tagged , , , , | 4 Comments

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.

image1

2017 Christmas Letter

 

 

Posted in general, Uncategorized | Tagged , , | 2 Comments

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!

Posted in general, Uncategorized | Tagged , | 4 Comments