When your week doesn’t get any better!

Well this isn’t so much a myeloma based post as a ‘What a week!’ post. I thought I’d try and get it down as I think it’s another example of how we’ve got stronger as a family and so able to cope with most things.

So we’ve just finished possibly the worst Easter break we’ve had! It all started off with a visit to my father who is struggling with dementia. And as anyone out there will know who has family members in the same position, it isn’t an easy scenario. One minute he is happy about the decisions that we make with him, and the next he thinks we’re interfering and trying to make his life harder. I’ve been on the ‘Dementia Friends’ course which I found really useful, so I now know how I should be responding….but actually managing to be the grown up in it all is posing more of a difficulty for me, and I’m finding myself arguing with him more than ever.

I think it is partially because that was how I grew up with him….lots of arguments and truth telling between us, and partially because of everything else that is going on in our life which means I’m pretty tired, grumpy and a little anxious at the moment!

Anyway, after some tears, shouting and frustration, with the kids and Marley (our dog) giving me lots of love and support, we sorted things out a bit. But just before I left, I had realised that dad had been sick the week before but not told anyone and it needed clearing. Not a problem. On went the gloves and it was sorted and the children and I left. I had a visit to make before we were due to go and visit old friends in High Wycombe where we used to live.

So, off we went to Wantage, down the road from my dad. I went for my appointment and left the kids in the car looking after the dog. Surprise, surprise, as all kids seem to have the knack of doing even at 14, suddenly they were both in the building for a toilet break. Ok. Well it would have been if on their way out, Rebecca hadn’t decided to try hurdling a tall iron railing fence, getting her foot caught in it and not being able to get it out! 20 minutes later, the fire engine arrived when we couldn’t remove it, she ended up high on gas and air and we had to get her to hospital! No visit to Wycombe. Luckily Nick had just flown in from Dublin as I had to drive Bex home from Oxford as the hospital wouldn’t see her for 3 hours and I couldn’t leave Sam in the car with the dog for that length of time. So West Midlands it was and Nick met us to take Sam and the dog home.

So after having arrived home just before midnight on the Tuesday, with her in a boot with a supposed broken ankle (now turns out to just be a nasty sprain), we spent the day recovering – Nick had gone to London for work. But around 5pm Sam started telling me he felt ill.

Around this time, I also got an email from my consultant saying that my figures had gone up again and that it was definitely time to admit I was out of remission and to discuss starting treatment. So a bottle of wine got opened and a couple of glasses drunk.

Bad mother who had been accusing Sam of eating too much chocolate then realised how bad she was when he projectile vomited down the toilet! Oh god. And then on the carpet! And within 20 minutes of this, I was also feeling bad – not long after I was joining him with the vomiting and we proceeded to take it in turns all night long. It turns out sickness can be quite a bonding experience (!) By the middle of the night, I was texting Nick saying he needed to get the first train back to us as I couldn’t cope (I’m not sure he’s heard me admit that before). And a good job too, as by 9am, Rebecca was also throwing up!

If you’re still with me at this stage, you’ll be pleased to hear this is pretty much where it all ends. I don’t think you could have written this. It was all so gutting as we’d planned visitors for the Thursday, Good Friday celebrations with Nicks family, and it was my Brother in Law’s 60th on the Saturday, all of which we had to miss as we were too poorly to get there. Luckily we made it down for my niece’s 21st on the Sunday although the kids still weren’t on great form!

So much for making ‘good’ memories – although there’s no doubting that we’ve definitely made memories this Easter!

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Happy Birthday to Me!

So tomorrow is my birthday and I’ll be 44!! Who would have guessed I’d get this far along the line – certainly not me when I was diagnosed nearly ten years ago.

And honestly I am so, so grateful to have got this far with relatively few problems or setbacks. But I can’t help but be slightly saddened this year and the pessimistic part of me (that I don’t often allow out with my myeloma!) is worrying that it could be my last healthy birthday. Totally ridiculous and without substance as I have as much chance of a good response to any treatment , as I do of anything else.

But at the same time, I’ve had 2 myeloma friends die in the past week and another, just tonight, has let people know that his body is nearing the end. I know that myeloma sometimes does a u turn in now it responds for people. Just because you’ve responded well in the past, doesn’t mean you’ll respond well in the future. It’s all a bit of pot luck!

So, I’m going to try and have a great birthday – a day out with Nick in Ludlow tomorrow (looking for old furniture for our renovated living area) and then a weekend away with my old school friends and our families. Hopefully lots of good food and good wine!

And for a few days, I’m going to try to put my insecurities behind me!!

Time for an update

I thought I’d write a quick update for people on here as it’s been a busy couple of months since I explained about coming off maintenance therapy and I haven’t really had a chance to let people know anything. We’ve been busy renovating the downstairs living room and thankfully are only a couple of weeks off completion now!

So, my last medical update was about being taken off Revlimid (my maintenance therapy). I’ve been off it for 3 months now…the first results weren’t too bad and my figures only went up by 0.5. Last month though, they went up by 2 which is faster than I’ve had it change over the past 7 years. It means that next months figure will be really important in my consultant making the decision as to what happens next and whether I start on the Myeloma XII trial which I have been given information on.

It is a really strange one – to feel that they took me off a drug that was keeping my progress slow and steady, resulting in it speeding up and potentially me needing treatment even sooner! I don’t quite understand how that makes sense for anyone except the drug company who no longer have to fund my drugs (they payed for them whilst I was on the Myeloma XI trial). I am wondering about challenging the system and asking for them on ‘compassionate grounds’ which apparently you can do. I need to look into what that means and how I would go about it, but surely if you can prove that a drug keeps you in some form of remission, that is more cost effective for the NHS than paying for a Stem Cell Transplant for me?

So, unless I can arrange for that to happen, it looks like I may well be back on treatment by the summer which would suggest a transplant at Christmas – not really what I want at all but if by getting in there early it stops me from suffering any type of bone or kidney damage, then I’ll have to go with it. We’ve thought about it lots over Christmas, as you’d expect. I maintain the fact that I’m majorly lucky to have been in remission for so long, and to have avoided complications. But, I’m absolutely gutted that, from being a healthy 43 year old who plays netball, racquetball and runs my own business, I will have to give up the sport etc and make myself so ill that I can’t function for 4 – 12 months. What a choice to make. It sounds strange, but in some ways when people are ill or suffering symptoms, the decision to go into a chemo regime feels like it might be easier.

The kids do know a little of what is going on. We weren’t going to tell them much until we knew I needed treatment to start, but then Sam started asking very specific questions about my health. We’ve always promised to tell them the truth and so we had to tell him that I’d been taken off revlimid. Of course that led to questions about the ‘what next’ so they do now know what could be on the cards. I think perhaps that’s for the best anyway – it gives them time to get their heads round it and I’m sure they’ll need that just like we do. It also means that if they stumble across my blog, that they won’t read anything on here that comes as a shock to them.

In the meantime, we’re taking the time to regroup and work out how 2019 might look for us. We had hoped to go away somewhere, but I think now, we will look at camping and prioritising getting our bedroom turned into an ensuite to help with the treatment process. I’m so pleased we’ve nearly finished the renovation of the living area as that means we have somewhere to enjoy and to have as ‘our’ part of the house (the rest is very dated). On top of that, it’s time to get back into doing things as a family….the poor kids have been very neglected during this whole house business, so we’re looking forward to more dog walks in the Clent Hills, more board games and generally more time together.

Next update probably won’t be until after the next lot of bloods…..I’ll be counting the days 😦

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!

 

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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!)

Merry Christmas

So Nick and I have done our usual donation to Myeloma UK instead of sending Christmas cards to our friends – as much as I hate how few cards it means we receive these days, the fact that charities are receiving money has to be a good thing.

But we have still done our annual Christmas newsletter for anyone who would like to read it (and who gets Nick’s sense of humour….or lack of!)

So wishing you all a very Merry Christmas and a 2018 that is happy and healthy where possible.

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2017 Christmas Letter

 

 

A month of new beginnings

I know I’ve been really quiet for some time now and it’s not for any reason other than that I have been mega busy!

This month has seen some quite major changes for me – moving into our new family home after two years in rented accommodation, and me making a final decision to start pushing forward with my new business. That along with Sam starting at secondary school and there is no way that anyone can accuse us of taking the easy road!

These changes have all been really exciting ones, but for those that know us, they haven’t been without an awful lot of thought, discussion and contemplation. Neither of us like to let my myeloma affect our lives massively, but when you are making big decisions, it has to come into the equation. Even now as I write this, I still keep my fingers slightly crossed that we have made the right choices with the direction that we have taken.

design.pngBuying a house that mortgages us up to the hilt was probably the most major decision. It is a fabulous house, that we can’t wait to turn into our home. But it will mean that Nick has the pressure of a large mortgage on him on top of everything else….and a 28 year one at that! That is the sort of thing that is hard enough normally, but we are just having to hope that nothing happens with my health to compromise his ability to work like he currently does. It is also a very old house that needs everything redecorating and some structural work too and in the back of our minds, the concern of whether this is good for me, or how we will do this if I relapse, is always there. BUT that said, it is SUCH an exciting opportunity that I think we would have always regretted it if we hadn’t given it a  go. I suppose in the back of my mind is that if things really got bad, we could always sell up.

At the same time as moving home, I have also started to push forward with my business concept – doing social media for small businesses who don’t have the time to do it themselves, but can’t afford the usual top rates that marketing companies often charge. I have finally realised that I don’t think a 35 hour a week role with a company works for me….I don’t know when I will be poorly and I hate letting people down! So this allows me to work for myself and pretty much schedule things to suit my family and my health. Perfect.

I’m very excited as it will allow us to do our renovations on the house quicker than we might otherwise achieve – I’ve already managed to pick up some extra clients since I made the decision and that is before I even have my own business pages set up! So now I’m working on the confidence piece. I don’t think I’d realised quite how much the myeloma plays in the back of my mind….making me doubt my ability to do anything. But luckily, I have a fab husband and wonderful family who have really encouraged me to push forward and have more faith in myself!

So, all in all, life is very exciting at the moment!

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!

 

An Update

My husband reminded me the other day that I hadn’t updated on here since I held my ‘The Perfect Pair’ event on the 22nd April….so apologies – I sometimes forget that Facebook isn’t the only forum in which people follow me!

The event on the 22nd with Nickolls and Perks, and held at the Stone Manor in Kidderminster was an amazing success and I am really delighted to say, that thanks to the generosity of so many different people, companies and friends, we managed to raise over £9,300! This is a fantastic amount as we only had 60 guests there on the night so I had been hoping for more like £5k.









It was a really fun evening, and whilst I’m not sure that Tim and David, our wine connoisseurs for the evening, managed to talk that much to us all, everyone really seemed to enjoy themselves. I hope that it meant that now, a few more people up in the Midlands know a little bit more about myeloma, and at the same time, that money will be vital in terms of helping Myeloma UK to do their invaluable work.

What is also great, is that the total there meant that, with the help and support of family, friends and work, we have now raised over £116,000! In fact, we are just waiting to hear from another company who did the Myeloma UK London to Paris bike ride after reading my blog, and while they have already got that total up to £123,000, we are hoping that they might actually take us over the £125,000 total. In fact, we are probably there as I think there are a couple of events that have been popped down as a little less than we actually gave!

So, for the time being, I’m taking a bit of a break from the fundraising. We are hoping to move house over the summer so that is likely to take up much of my time. In addition, I’m looking more into my social media business and considering whether to keep it at just that or develop it into more of a ‘Virtual Assistant’ business. Lots to consider given my health situation so I need to give myself some time to focus on it all rather than keeping on making excuses as to why I can’t do it! In the meantime, if you need some help with Facebook but don’t want to pay £50 an hour for a guru, get in touch with me….in this day and age, we don’t need to live in the same area for me to be able to help!

(All that said, if anyone likes their whisky and wants to be kept up to date on a potential whisky fundraiser for 2018, let me know! )

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….

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?