Today was my routine check at Southampton – and to be fair, I really haven’t been feeling great lately. I seem to have picked up every cold, bug, and sniffle that’s going this winter – even after the flu jab – and each time they have been a pain to get rid of. I know the consultants keep telling me I am still immune-compromised… but I feel fine (usually) and just don’t want to be ill anymore.

Anyway – off we go, and I even said to Zig I must not go and sit with the others – just in case… but when we got there I felt much better and me being me, I just stormed right in!

I desperately wanted to catch up with Stacey, another transplant friend – which I did – Check! Have bloods taken, pressure check etc etc – Check! Everything going as usual – then in to see Kate.

Oh dear – she immediately knew I wasn’t well, apparently I sound terrible – and she was NOT happy. I felt like I had been dragged in front of the headmistress, (and believe me I know how that feels). She put on gloves, mask, and plastic apron then gave me a proper dressing down. I know it’s precaution, and I know they are not worried about me – but for the other patients who are only recently out of the procedure.

When it all hit home how irresponsible I had been, and how thoughtless, I felt awful! I left Kate’s room red in the face, very embarrassed, and didn’t know whether to run away or say sorry to everyone.

I haven’t been here before either – and every experience is a new one. When you feel better you think it’s all over, and when you know other transplant patients are out at the supermarket or dealing with small children flinging germs all over the place – you can forget when it comes to the crunch.

So there’s me – feeling awful – both physically (for me) and mentally (for everyone else), and Kate realises that I am sad about my thoughtlessness – but reminds me I am not out of the woods yet! This is going on far too long for my liking!

So much for my routine check – I am then told one of my lungs isn’t as strong as it used to be (“not to worry though it’s fine”), and I get shipped off for a chest X-Ray and a sinus X-Ray. (The radiographer won’t do the sinus one).

I am put back on horse size antibiotics and told that if it’s not better in a couple of weeks they will do a Sinus Cat Scan to make sure there’s no fluid causing repeat infections through sinusitis!!

So… that’s me. 18 months out from transplant and still not quite better. It seems it was never quite as simple as I had led myself to believe – but we must be on the up as Kate is even talking about redoing the childhood vaccinations!!

Sorry again to everyone who was in clinic today – see you all soon! xx

It’s amazing to think it’s nearly two years since my diagnosis. What a journey! Until that point I had never given a thought to blood cancer, or bone marrow transplants. Why would I?? The closest I got was watching a TV drama called ‘Undeniable’, and thinking how amazing… a bone marrow transplant changes your blood group to the same type as the donor’s. Little did I know!!

The fine tuning is now taking place. I still have to go for regular check ups, and I still have to be careful about some things I took for granted before all this. But when I remember Dr Sarah Janes telling me, “You need a bone marrow transplant, and without it you will probably ony have three years left”. Wow – that stopped me in my tracks.

I know this will come as a surprise to many who know me, but this little post is really just to say: I have sort of had enough of talking about myself now. I am back to work, I feel a lot better, and I sort of want to move on and put my experience behind me!

That said – I love the fact that this blog has helped, and is still helping, people going through the same journey. And this is what I want to do now – try, where I can to help make a little difference to other sufferers and their fight. Please feel free to send me a message, or ask any relevant questions. But for now I am going to be quiet, unless – of course – there is anything specific to say.

Zig and I are also hoping to get something going that helps support bone marrow transplant patients a little more, so keep an eye open for that. If we get it off the ground you can be sure I will be back blabbing about that!!

So for now – once again – thanks for visiting, thanks for all the kind words and support. See you soon.
Lots of love… Lucy xxxx

Have just got back from Southampton!!! Wow, I was emotional, unfortunately because of my immunity and T cells, I still have to attend the same clinic that I first went to on my release! So I was greeted by a que, just to check in! 46 people, the biggest clinic ever!! I should of felt happy, as I am in remission and a lot further ahead of most people in the clinic!! But just sitting there looking at all the lines (tubes), bald heads, sallow completions, masks and general fatigue! Was a horrific reminder of last year and I was trying hard not to cry as I had already blubbed in the car park, looking up at my room!!

After being weighed (I always say, ‘don’t tell me’) my number was called for blood!! As you may remember at one point they struggled to get my blood, as all my veins were hard, from the severe amount of chemo I have had! Today, however, I was like a tap!

On returning to my seat I struck up a conversation with various people and one asked me if I was Lucy Hart and they had read my blog and it had helped them through their treatment and thanked me, that put a smile on my face and then I met Colin and his wife who had also read my blog!!!

Debbie Richardson calls my name (one of my fav cons!!)

‘I do hope you have bought your holiday pics’, she says, ‘who carries round a pack of Photo Print?’ I say!! So I randomly produced some pics of Zig and a turtle and us doing a stupid dance! She looks bemused!!

Anyway on we go and she tells me that she is delighted with my progress and that I have 44% of Jane’s immune System and am building my immunity on my own so at the moment don’t need anymore of her cells!!! She explained the blood test today was to check my chimerism, which basically means, if that percentage has risen!!

Has still told me to be wary of children as still haven’t had MMR, which is so important! So next apt in a month and carry on with the medication and pentamidine! I long for them to say ‘your treatment is finished!’

Oh, by the way also been told to book a flu jab at my local surgery and to suggest, ‘could I have it done when it’s quiet?’ (To try and avoid, waiting in an infection filled waiting room) think the receptionist is going to dislike me intensely!!!

So, we were allowed to get away for a break – and to really impress the other hotel guests we treated them to a demonstration of our top quality dance moves. Just keep your eyes open for the chap in the pink shirt, and the girl in the dress and flip flops…

There is life after transplant!

For all my birthday messages xxx