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

About Deb Gascoyne

I am wife of one, mother of two and a person in my own right :-) I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-)
This entry was posted in general, illness, Myeloma and tagged , , , , . Bookmark the permalink.

4 Responses to Changing Times

  1. alexbicknell says:

    It’s always hard: not letting myeloma intrude, not thinking too far ahead.

    And yes, managing stress is hard too. We know it’s bad for us, but we want the challenges, and we want the outputs.

    No flippant advice from me. And no envy and no guilt. Just a cyber-hug. So sorry to hear your numbers are on the up. Keep strong. and may the waiting – agonising as it sometimes is – last a very, very long to me.

    Like

  2. mymyeloma says:

    Chin up! We all feel like that at some point. I have only had this for about 18 months but VTD, CTD and DT PACE have all failed to reduce my light chains. They have decided to go ahead with SCT anyway as the Melphelan may do the trick and they want to keep other drugs in reserve. I have started to get a little blase about the monthly count; what will be will be, after all the more stressed we get the worse we feel. Yes it worries me, going on my track record that I will go through all the stress of SCT and it will give me little or no remission but worrying isn’t going to make a difference. This bloody thing never goes away and is constantly at the back of our minds. The inability to plan really gets on my nerves; no holiday for me again this year. I am a great believer in remaining positive, focusing on what I can and have done and not dwelling on what I can’t; so many people are in a worse predicament than me. If our lives are to be cut short then we owe it to ourselves and our families to live that life to the full as much as we can.
    Hope your results are positive.
    xx

    Like

  3. 4windsfl says:

    I guess the only thoughts I can offer for support are that any time you find yourself starting to focus on negative stuff that might stress you out, try to refocus on anything that will bring you delight and joy. That is one way to reduce stress. Hoping your summer brings you some lovely fun times.

    Like

What are you thinking?

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s