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.

16dcde62b35e556376c2a254cedc1ebf

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….

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, Uncategorized and tagged , , , . Bookmark the permalink.

5 Responses to Nothing is Forever – except a cancer diagnosis

  1. alexbicknell says:

    Yes Deb. Exactly this. It is my experience too.

    I hope your infection and breaks clear up quickly. I’ve been blissfully well of late, except I keep having problems with kidney stones which is annoying because it somewhat takes the edge off life (understatement!)

    Plus, like you, the eternal challenge to be “normal”. One minute we’re making long term plans and dreams; the next we’re remembering the perennial caveat. A peculiar existence. And hard to explain to others – so thanks for writing it up.

    Liked by 2 people

    • Deb Gascoyne says:

      Thanks Alex. I always worry writing my blog that either people will think I’m writing a pile of nonsense or that I’m the only one. It’s helpful (although not wishful) to know that others go through the same feelings I/we do. X

      Liked by 1 person

  2. meeshymeesh says:

    Hi Deb, My name is Michelle Gillet and I have been meaning to write to you for the past…. 4 years. Yes you read correct. I, like you am a young ‘un. I was diagnosed just after my 40th birthday. (8 years ago now). I am a Brit living in South Florida so found your blog very easy to read. I tend to find medical issues and symptoms are over dramatized here so reading a British blog was very insightful. We have lived over here for the past 10 years. I too have a boy and a girl. Liam is 10 now and Lauren 15. I read all your posts and then tell myself I will write to you tomorrow and well you know the rest. I spent a year trying all combo of treatments with no reduction in my m spike so had a auto transplant which only got me into partial remission, so 3 months after the first transplant had the second which finally got me in remission. I then spent a year taking Carfilzomib as maintenance therapy. I then had a break for 6 months and started on Revlimid maintenance. I have been on and off Revlimid for the past 3 years. Generally my health is good apart from the Myeloma but as I am in remission I try to forget I have it except for the monthly reminder when I have to get my blood work done, then nervously waiting for the results. I too am very active. I recently just completed a Sprint Triathalon. My first ever. I was so pleased with myself but knew the inevitably was going to happen. Get a cold…And yes of course I did and I have been wiped up for the past 3 weeks with a cold, which most people would shake off in a week. Whenever, i embark on a health and fitness program I inevitably come down with a cold. I find it so so disheartening. I have been thinking and worrying a little more about my Myeloma lately, as I am 5 years post transplant and that tends to be a turning point for many Myeloma patients. Anyway, so glad I finally wrote.. Michelle Gillet

    Michelle

    >

    Liked by 2 people

    • Deb Gascoyne says:

      Hi Michelle
      Lovely to hear from you…and I’m glad to hear that my blog has helped you a bit. I sort of know what you mean about the US info…it was the first stuff I read and it scared me stupid!!!! I tend to tell people to stick to our Myeloma UK site now but that’s also because our treatment is still a bit different to yours too.
      Anyway, wanted to say to try to ignore the numbers…I’m great at giving advice but just rubbish at taking it myself!!
      Take care
      Deb x

      Liked by 1 person

  3. 4windsfl says:

    I am the mother-in-law of a lovely guy who was diagnosed 8 years ago as well and after two autos and one allo (from his sister) is carefully enjoying a respite from treatments; this past year has been crisis-free (except for selling one house and moving to a farm and all that entails!). However, with other MM folks having less success I am brought up short in my dreams of what might be a long-term outcome for this family. I follow others’ blogs so that I can be aware of resources, information and new trials in the event we are facing a new onslaught because, like you, the whole family is living on the edge of the numbers. I hate the expression “new normal” but appreciate its origin. I wish all MM folks and their families more remissions and less angst.

    Liked by 2 people

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 )

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s