Category Archives: illness

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.

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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….

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Shouldn’t be surprised…..

So this time while I sit in hospital, pondering what my bloods will be for another month, I thought I’d write about something that might actually help someone.

It all stems from us visiting Australia over Christmas and if you’ve ever suffered from dry skin, you might want to keep reading.

Personally, I’ve had eczema since I was a baby. It has never been horrendous, but it’s been pretty bad with fingers cracking and generally a dry skin issue. My skin is constantly dry unless I use moisturiser – which I’m too busy (for busy, read ‘lazy’!) and my head has been itchy for the last couple of years. It basically makes me feel pretty scummy and not particularly attractive at the best of times.

I had my first shock when I had my stem cell transplant. My eczema pretty much cleared up! And that was nearly 6 years ago! I don’t ever have a big reaction now, and don’t tend to suffer from allergies in anywhere near the same way. Now don’t get me wrong…I won’t be recommending a transplant as a cure for eczema, but it did totally surprise me. I can even wear earrings again which was a big ‘no, no’ before as I would always react.

Despite that, I continued to have the dry, slightly flaky skin (ummm, nice!), the itchy head and the generally not nice feeling about myself. Until we went to Australia. While were out there we were staying in AirBNB properties, most of which had septic tanks. Any of you who know about these (!), might be aware that you have to be very careful what you put into them. So all of the properties we stayed at provided all the usual toiletries, cleaning materials etc that you would expect in an AirBNB house…with the slight difference that they were always organic, and always without Parabens and without soap (along with a few other things that I can’t remember!). Any my head stopped itching so much, and my skin became less dry!

So when I got home, I thought I’d try it out to see whether it was the products or whether it was the water/ environment out there. I’ve been using a Forever living shampoo and conditioner for the last couple of days (Thanks Katie! And if anyone wants some let me know) that whilst I don’t think is organic, doesn’t have parabens or sulphates in it. And already my head has stopped itching so much! I’ve also grabbed a shower gel from a health shop and found that whilst my skin isn’t beautifully silky and smooth, it definitely doesn’t have a permanent dryness now!

So, I’m still in a slight transition phase and am still trying to make sure it isn’t just a fluke, but actually, it can’t do any harm to knock out all these chemicals, especially since I’ve been saying for years, that they must be contributing to all the conditions that are now out there. It’s not a totally easy decision as the products costs substantially more than what I used to buy for us. However, if it does the job, then it is probably worth the extra pennies. I’m going to try my son next as he has dry skin – it’ll be interesting to see how it helps his skin, if at all.

Anyway, I’d be interested to hear if anyone else, post transplant, or just in life in general, has experienced anything similar, and also whether if so, they have any products they would particularly recommend?

 

 

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New opportunities

I thought I’d write a brief update as I have been back to the fracture clinic this week….and am pleased to say that I have been told that my foot is finally healing well and whilst not 100%, it doesn’t require me to stay in a boot!

It’s brilliant news although I had already started doing small walks etc without the boot on as my foot felt so much better. I can still feel it a bit and I can’t say I’m ready to go running or anything like that yet, but it is nice to feel that things are progressing in the right direction. The consultant was very clear, physio won’t help it particularly, and I shouldn’t play netball or racquetball for another 10-12 weeks.

I can’t say I’m pleased about the second part of the outcome, but nonetheless, I do realise that it isn’t just me that it impacts when I have these breaks. Nick ends up having to do so much more, both around the house, and in terms of driving and ferrying the kids around. And then there are all the family and friends that I also end up having to ask to help pick up the pieces. So, I have promised that I won’t go back to sport too quickly and that I will make sure I take it easy when I do. And here, in writing, I promise, that if I break that same bone again playing sport, that I will stop the netball and racquetball altogether 😦 .

That said, I do need my sport. It makes me feel so much more positive and so much better about myself. But if I have another break, I’ll have to find another way of challenging myself without doing high impact sport. It won’t be yoga, pilates or swimming, but perhaps tennis is slightly less ‘bouncy’!

In terms of my myeloma, it continues on a gentle path. Since just before we moved to the Midlands, my figures have been ever so slowly rising. And I mean REALLY REALLY slowly, so no need to panic anyone! I’m certainly not. It is so slow that I would imagine that I’ll have well over a year before I even have to consider restarting treatment….and if the numbers stop going up, much longer! I was talking to Nick the other day and all it means is it gives me a focus on not procrastinating with things that I want to do. I’m going to think of it as a timeline to work against and if that timeline extends, even better!

So, I’ve started trying to find a venue for my next fundraising event which will be some sort of large cheese and wine dinner. I’m hoping that we might get the venue where Nick and I got married, but we’ll have to see….I’ll need to work some magic with pricings to make it effective! I’ll be looking out for sponsors and some auction prizes too so if you have connections, maybe you can start thinking…..it won’t be as big as the Glitz and Glamour Ball, and the auction certainly won’t be so big, but I really want to raise this extra £10,000 and reach £100,000 before any relapse gets hold of me!

Over and out for now….got some bits to get sorted for #myelomaawarenessweek in June!

 

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