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?

 

 

All Change

I haven’t written for absolutely ages….and yet tonnes has changed and I probably should have done. I can’t even remember what I last put on here but we are about to embark on a major change of direction so I thought I’d update the blog.

A few months ago, Nick had the opportunity to take redundancy from his pharmaceutical job. It was a decision that made sense to us, and it gave Nick an opportunity to take stock of what he wanted from a lifetime of work (!) and look at what was out there. While he was making these decisions, he started doing some interim work for my brother in law who sells hardtops and accessories for 4×4’s (Autostyling Truckman for anyone who has an interest!). A massive change of direction but at the time it gave Nick the space to look for work with no pressure, and for Mike, I think it gave him someone with a wealth of experience to look at his business.

Little did we know when he started, that he would be offered the new position of Commerical Director with Autostyling Truckman. An offer that, given that the role is based in the Midlands, would require us leaving our home of 13 years in High Wycombe, and moving back to where Nick grew up, and where his family and friends, and my sister and her family live.

This all happened remarkably fast and since then, we have been in a whirlwind of finding new schools for the children, selling our house and finding somewhere to rent for a year while we find a permanent home. In fact, I think we’ve managed to turn the whole thing round in about 6 weeks!!

I’m ever so mixed with my feelings on the whole thing. It is an amazingly exciting opportunity, both for Nick and for us all as a family. New places to explore, new people to meet and new jobs to work hard at. But I am definitely very scared about what I am leaving behind. We have lived in High Wycombe for 13 years now, and our kids were born here (Sam being born in our home of 13 years!). We have an amazing group of friends in the area who not only saw us through those early days of starting a family, but who have also supported us through my diagnosis of myeloma, my transplant and everything that came with it. I can’t begin to name the people who have been amazing, but I hope they all know who they are. I will miss them massively as we move on and just hope that the 90 miles up the M40 won’t put them off visiting us.

It’s not only the Wycome folk though. Many of my family, and my older school friends also live in and around London and so of course the move takes us further away from them….just popping over for the day isn’t really a reality now. The positive is that perhaps we’ll get more quality time with them as we’ll all have to stay when we visit each other…..but sometimes that can be tough to fit in for people with jobs/families/homes. So whilst I have every intention of doing it (they can’t get rid of me that easily!), I am worried it will put others off!

I’m actually say at the Marsden in Surrey as I write this. That is another ‘end of an era’ moment. I came here in 2010, around a year after my initial diagnosis. I wasn’t happy with the consultant I had at Wycombe and we made the decision to travel round the M25 each time to get access to consultants and a hospital which has looked after me amazingly. I have to say, the move is a little easier as my initial consultants Faith and Gareth, both moved to America last year and other than my CNS (Clinical Nurse Specialist) Sharon, and my trial nurse, Gemma, other staff often come and go. But I have been amazed at how they all do whatever they can to make life easier. No pain is silly. No concerns are ridiculed. Everything is taken seriously. And more than that, they treat me as more than just a patient. I am a person in my own right to them. I happen to have myeloma which they treat, but that isn’t what our conversations are ever about unless they need to be! I will miss the fact that I am known there and that I know what I’m doing. That said, I have been put in touch with Heartlands in Birmingham and will start there next month with a consultant who has been lovely since I contacted him. So new starts can mean other new things which hopefully will be good.

I had worried that I was starting to relapse a month ago, but we no longer think that is the case so that’s great news. Obviously we never know when it might happen….could be a month, could be a year, could be 20 years. Keep hoping for the latter please!

Anyway, it will all kick off when we get home tonight. Packing the things to go in the cars, before the packers arrive tomorrow to pack everything else. And then on Thursday we leave West Wycombe to begin our new adventure. So I just want to use this as an opportunity to thank everyone who has been there for us and to say that we want to keep those friendships going every step we go. Friends and family are always welcome to visit us – you mean so much to me. And we will make sure we visit too. Thank you everyone. Love you so much. xxxx

Post 22 – Happy Anniversary (No.1 & No.2)

Five years ago today our life was totally transformed. I clearly remember sitting in the Consultant’s room in Wycombe Hospital with him telling me that unfortunately the Bone Marrow Biopsy that he had been so sure would come back clear, had nearly 10% myeloma in it. It was all a bit of a blur really. I had ‘Smouldering’ or ‘Asymptomatic myeloma’

We came home with this diagnosis being told that it could stay like that for years. Smouldering myeloma (how sexy does that sound for a cancer!) meant that I had no real symptoms. No bone damage, no sever anaemia (just minor), low calcium levels and no kidney damage. We were still pretty shocked at that time. I told friends and family but kept hoping that I was being my usual ‘drama queen’ self and that it wouldn’t come to anything and that I would be watched for many years. Everyone kept telling me that I could be fine for many years without treatment. 

The first few months were really scary. I read too much online. Figures saying that I only had 2-5 years to live. Stories of how myeloma negatively affected people’s lives. Nick would regularly walk in the room in the early days with me sobbing over the laptop as I read about what my life might possibly look like, or heard about another myeloma patient who had passed away. And then I started fundraising. It gave me a bit of a focus with it all and I truly believe that it helps me to stay positive about what I am now living with.

As I did all of this my paraprotein levels (the blood measurement they use to look at disease progression) kept rising slowly. But I still had no real symptoms. And then they started to get concerned at how high these levels were rising, at the fact I was becoming more anaemic and that I had some pain in my back that they were concerned could be the start of bone pain. I transferred to the Marsden in Surrey to ensure I got the best care, and in November 2011, my treatment started. 6 months of various chemotherapy to try to reduce my paraprotein levels so that I could have a Stem Cell Transplant (SCT).

Tomorrow is Anniversary No.2….3 years since I had my SCT. And with that I feel amazingly lucky. So many people that I know haven’t had 3 years of remission. With it comes the knowledge that when I relapse at some stage, that another transplant is possible, and that with that comes potentially half the length of time again that I get from this current remission. That is assuming that they haven’t moved away from the use of transplants (and that IS likely to happen at some stage.

A Stem Cell Transplant is REALLY invasive. I felt like I’d been run over by a bus. It was probably the worst thing I have ever been through in my life and ideally I will never have to go through it again. But I know I quite probably will. It is a really lonely experience. You are just so ill that you (well I at any rate) don’t want to see anyone for 3 weeks. Even the visits from Nick were hard as I was too tired to talk to him or do anything. I didn’t even get out of my room for about two weeks. But it did the job for me….it has given me another 3 years of a relatively healthy lifestyle. I think I do more than lots of people who are healthy…something I couldn’t contemplate when I walked out of hospital nearly 3 years ago. 

Being diagnosed with cancer is bizarre. It seems surreal and like it can’t really be happening to you. And like someone must have got it wrong. I still sometimes find the whole thing very surreal. Whilst once in a blue moon, I worry about dying early etc, I’m don’t think I really believe that it will happen. Fingers crossed the research will continue to progress so that this ‘head in the clouds’ mentality is a truth! I’m back now to the stage I was when I was smouldering. Believing that things will stay good. And that is great.

I will spend today reflecting a little on the past 5 years and how far I have come on my journey with myeloma. And I will also be remembering my lovely friends, and their families, who have not been as lucky as me. Pamela, Amanda, Sharon, Penny, Isabelle, Sean, Bridget and Paul….just a few names of people who were my online and ‘in person’ friends. It really brings a lump into my throat. 

And I will also be grateful to all of you who have supported Nick, me and the family through everything. We are so lucky to have you all. xxxx

If you would like to sponsor me with my #40ChallengesB440, 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