Tag Archives: relapsing-remitting

The consequences of complacency

So recently I learnt about the consequences of complacency. And sadly it was my son that bore those consequences which broke my heart.

We have been so careful about what we have told the children about my myeloma over the years. They were only 2 and 4 when I first got my diagnosis, an age that was obviously too young to share any details with them. Only when I started treatment, did we tell them the first bits of information, and even then it was only that ‘mummy had poorly blood and needed some medicine to help make it a bit better’. We explained what that might look like and left it at that. They were so young that they didn’t really ask anything further and my treatment and the effect of it remained between Nick, me and our family and friends. They didn’t need to hear the figures we had read about 2-5 years life expectancy or listen to our concerns that I might not see them reach primary school .

As the years have moved on, my fundraising has obviously had an influence on them and they have been aware of myeloma. I’ll never forget the first time that they asked me whether myeloma was cancer and I had to say yes and explain that I was still doing well and that it had gone away because of the medicine that I’d had, but that I still had it. Our focus was always on how well I was despite having myeloma. We have always sworn that we will never lie to the children about my myeloma – if they ask us a question we answer it truthfully and the most we will do, is leave out information if we don’t think they’re ready to cope with it.

To try to make sure they didn’t hear too much or find out things without our knowledge, we always made sure that whilst I publicised my fundraising with friends and family, that I didn’t take it bigger in the early days. I turned down the idea of articles in papers etc because I didn’t want to risk them hearing the message I would have been giving to people. Anything that I did do, was away from High Wycombe where we lived, or didn’t open them up to seeing anything that made them realise that myeloma was an incurable, relapsing, remitting cancer.

But since we moved up to the Midlands, Nick and I made the decision that they knew enough for us to be able to publicise my fundraising a little more. They still didn’t know that information about myeloma, but they knew enough that we felt that me doing an article in the local paper wouldn’t be an issue….and that the reality was that they wouldn’t see that article anyway.

I got it so wrong though….when I saw the article it was online and so I didn’t really pay much attention to it apart from to use it to help promote my event in April. My sister kindly got a copy of the paper for me and I threw it down on one side in the study and thought nothing more of it. And then Sam came and found me last week and said that he had read the article when he was up before me one morning. And said that he hadn’t realised that I might have only had 2-5 years. He had tears  in his eyes and was so sad it broke my heart.

And so began the next stage of our education about myeloma for him. And as heart breaking as it has been to have to burden him with that information, I am so relieved that I was still able to tell him the truth about how it is and that for me, I don’t seem to have an aggressive form of the cancer. I was so honest with him that we were both teary at the end. I explained that he was too young before to worry him about it and that we would always answer his questions honestly. I explained that I was currently well despite being 8 years post diagnosis so those figures couldn’t be accurate for me. And I promised, at his request, to tell him when anything changed.

The hardest thing is to know whether to tell Rebecca now or whether to wait till she asks the question. She apparently hasn’t read the article so do we worry her about it all or let her continue in ignorance for as long as possible. Will she be cross her younger brother knew before her? Does that matter if it stops her concerns. She’s very different to Sam so at the moment our gut feeling is to leave it and deal with it as and when it comes up. God parenting is hard….even without having to deal with cancer!

I’ve talked to friends and family about what has happened and people have said not to beat myself up about it. I think they’re probably right – he was always going to find out at some point and so now hopefully he will feel he can talk to us about it along the way. And maybe, just maybe, it might make things easier for him to take on board, as and when I relapse.

Myeloma certainly impacts life when you least expect it!

 

3 Comments

Filed under general, Myeloma, Uncategorized

POST 39 – 10 Facts about myeloma and Myeloma UK that you might not have known!

So for my second to last ‘official 40B440’ post, I thought I’d go back to the grassroots and tell you some bits and pieces about myeloma and Myeloma UK that you didn’t (or perhaps did!) know. I hope they’re of some interest to you! Some of them I didn’t know about either!

To start with, a brief overview of myeloma though….Myeloma, also known as multiple myeloma, is a cancer arising from plasma cells, a type of cell made in the bone marrow that forms part of your immune system. Unlike many other cancers, myeloma does not exist as a lump or tumour which can often confuse people.

FACT 1:

The current treatment of multiple myeloma has improved markedly compared with the rhubarb pill and infusion of orange peel that was given to Sarah Newbury in 1844! Whatever we may think about our treatment regimes nowadays, we have definitely moved on!

FACT 2:

There are approximately 4,800 people diagnosed with myeloma every year in the UK. It is the second most common form of bone marrow cancer, but only represents 1% of all cancers

FACT 3: 

20% of people die of myeloma within the first 60 days of diagnosis. This is largely due to late diagnosis allowing progression of the disease.

Since my diagnosis in 2009, I am pleased to say that the average life expectancy has now moved from 2-5 years, to around 7 years…..and is improving each year as new treatments are being identified. In fact, survival rates are increasing faster than in any other cancer in the UK!!! Great news for many myeloma patients.

FACT 4:

Myeloma is a relapsing-remitting cancer. This means there are periods when the myeloma is causing symptoms and needs to be treated, followed by periods of stable disease where the myeloma does not cause symptoms and does not require treatment

FACT 5:

The causes of myeloma are not fully understood but it is thought to be caused by an interaction of both genetic and environmental factors

FACT 6:

On average GP’s will only see one patient with myeloma in their entire career. This is why awareness is absolutely crucial.

FACT 7:

The ring around the “My” in the Myeloma UK logo emphasises the individual nature of myeloma (every patient’s experience of thMyeloma logo CMYK for printe disease is unique) and represents a plasma cell, a type of white blood cell that is part of the immune system and can transform into a myeloma cell.

FACT 8:

Myeloma UK established the Clinical Trial Network in 2009 to prioritise the most promising drugs in development and get those treatments to myeloma patients in the UK faster. The CTN continues to grow and has halved the average time it takes to set up a clinical trial. This is critical with a cancer that sadly is taking many lives each year.

FACT 9:

Myeloma UK receives no government or NHS funding. Their work is made possible by the generous support of fundraisers (yes, that’s us!) and donors and they work strategically to make every penny count.

FACT 10:

The majority of funds is dedicated to research into better treatments. The Myeloma Research Centre at The Institute of Cancer Research, London is a world-leader in the field of myeloma biology and genetics.

40th-birthday

If you would like to sponsor me with my #40ChallengesB440, to support Myeloma UK and help make myeloma history, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

1 Comment

Filed under Uncategorized