One Final Thought

As I was signing off, I suddenly thought back to the gruelling pre-transplant chemo treatment. It was awful. But as they say… you remember the good things, not the bad – and here we are four years later and I have almost forgotten the nastiness of it all. So I thought I would post a pic of one of my lists of chemo treatment. (This was at Southampton, I had already had two intense courses at St.Richards).

You can see, I ticked it off every day to help me count down each day and keep focussed on a positive outcome.

It was a bit daunting, but it can be done! If you suddenly find yourself faced with such an intimidating list – you know where to find me, so get in touch – even if you just want a bit of reassurance. Patient or partner/family member etc. Having gone through it, I am convinced it’s harder for your loved ones to watch the experience…

chemolist

https://www.facebook.com/lucy.hart.12

Signing Off

Hi you lovely lot!!!!

As promised, here is the close of my blog. It has been a major challenge, but I have had amazing support from you all!!! So… in true Award Ceremony style… I just need to do a few thankyous!!!!

Dr Simpkin – for recognising there was something wrong in the first place
Dr Janes – for diagnosing it. Enjoy your retirement 🙂
Viv Richards – specialist haematology nurse – who dealt with Zig and me after the ‘shocking’ diagnosis, for the ongoing support afterwards.
Jane Cochrane – my gorgeous donor, sister, supporter and bloody brilliantly she was an exact match!!!
Donna Michelle – nurse and confidante. We just chatted, and chatted, about so much girlie stuff.
The Fernhurst Centre at St. Richard’s in Chichester. Amazing people, such fantastic care, dedication, and let’s be honest… patience!
Dr Rob in Southampton – for looking about 12 and getting it right!!
Debbie Richardson who was my initial Consultant in Southampton, and Kate Hill, another amazing Southampton Consultant who looked after Jane initially and me afterwards, with such good humour and dedication… I loved our common interest in clothes and fashion!
Joan Newman BMT CNS
Nikki McKeag BMT Lead Nurse
And Darren – a truly amazing supportive nurse on the ward in Southampton while I was locked away for five weeks.
The whole of C7 – you know who you all are, Lisa Fisher, Hannah Watson etc
Zig – for being at every complicated appointment and explaining it all. I’m sure he’s now fully qualified.
The whole of Chichester Cancer team, the Southampton Bone Barrow Transplant team, and Billingshurst surgery for dealing so well with me!!!
Henry for visiting and making me laugh, so much, and Charles for driving me backwards and forwards.
Ian Armstrong – personal trainer, who has got my fitness back and showed me HOW to exercise!!!

Anyone that needs to chat or ask questions about this disease please call me or email, as I am now a mentor for leukemia care and Blood Wise and always happy to chat. It’s a bastard disease, but we are winning the war and you can get better. A word of advice though… it doesn’t matter how shit you feel – do what they ask you to do! Keep your shoes on, drink lots of water, etc etc. They know what they are talking about!!

I am now well, I have to take penicillin (to my annoyance) twice a day for the rest of my life and I have been left with one lung only inflating half way, but I am cured, thanks to the team above and my darling sister for having the right blood cells for me!!!

As you probably have all seen, (and by the way if you’re bored of me on FB just defriend or unfollow – I will understand), we are attacking life with gusto and not wasting a minute and are moving on to another venture!! You never know what’s around the corner, and we have one life… SO LIVE IT!

Love you all xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Three Years

I haven’t been here much lately, but I get the odd reminder on Facebook that it’s been three years since my diagnosis and transplant and I can’t believe it!

There were days when I never thought I would feel well again, but now it seems so long ago and I feel great! We did a funny little video trailer to amuse ourselves, so I thought I would put it up here too – just to prove… you can have a life after leukaemia! 🙂

The video has sound which we think makes it funnier, so turn on your speakers! xx

Ooops…

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

Big panic! (For me anyway)

What a day!! It all started with Zig telling me I would be feeling better today as we have both had a nasty bug for the past week, but I didn’t. And he was the one with the doctor’s appointment at 8.40.

So off he went, leaving me feeling like crap, to see if he had picked up something worth investigating. To be fair, I had already been on Wednesday, and was given some monster antibiotics as they thought I have a bacterial infection in my left lung. The result – he’s ok, just needs more water and vitamin C, but he did manage to book me in with the lovely Dr Susan Simpkin for 11.20. She’s the genius who spotted my low white blood cell count in the first place!

So – we blocked her surgery for about 40 mins. I felt terrible for the poor people waiting, but this was NHS at it’s finest. When they need to move, things happen, and Dr Simpkins wasn’t taking no for an answer. She was on the phone to Southampton for advice immediately, and spoke to Debbie Richardson one of my fab consultants. Result – shipped off to see Jamie Wilson in St.Richards for in depth tests! Wee, saliva, blood, x-Ray, and what ever else they could find to fiddle with!

Long and short – they will call if there’s anything sinister but they don’t expect to speak to me any time soon. I have to have a pentamidine top up next week, but that was due anyway.

My biggest panic of the whole day was when Jamie turned round and said they had a bed for me but I should be OK to go home after one night. I think my face said it all, and he quickly changed his mind!

Anyway – home again now after ventolin nebuliser and a whole lot of prodding and poking. Fingers crossed they have nothing more to say, and my Whisky Mac turns out to be the only tonic I really needed.

Thank you NHS – where would we be without you? xxxx

Ventolin Nebuliser

The Journey…

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

beach

Emotional

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!!!

You Can Still Dance Post Transplant

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!

Don’t say: “F*!K or Bug*er”!

Today was another lymphocyte infusion day, made possible by Jane’s extra cell donation last week, and because it’s now just a routine procedure we set off in good time without a care in the world. The traffic was really quiet for once, so we arrived in Southampton full of laughs and confidence.

Little did we know that was going to be short lived!

We checked in and, with time in hand, got a coffee from Costa and poked our heads into C6, the ward where I had my transplant a year ago this Friday. This was my first visit since I was ‘released’, and I felt really quite strange and uncertain about it. Sadly, other than Darren (who I love seeing as he was so fab), there was no-one I recognised so we went back to the day ward C7.

After half an hour’s delay Joan was ready for me, and in we went. I immediately sensed something wasn’t quite right as Debbie, one of my consultants, was also there. They wanted to have a good look at my skin as the next phase of the lymphocytes are much larger doses which can trigger GVHD if they don’t tread carefully. So… next came the bad news. Since my last infusion the sun has triggered a bit of GVHD on my arms, my chest, my back, stomach and legs – and they are worried that increasing the dose in one big wallop could cause a worse reaction.

As you can imagine, I was gutted by the news, especially as I have been doing so well and have had no setbacks so far!!

So now I am not allowed to drink again for two weeks, with the exception of a couple on my birthday, I am not allowed in the sun for two weeks, I am not allowed in the pool for two weeks, and I have to keep myself liberally smothered in a steroid cream called Betnovate, then head to toe in suntan lotion on top just in case I go outside to the shops or whatever! After these two weeks, I have to go back for another inspection and lymphocyte top up on the 19th.

In the meantime, everything else looks good for now and I have to keep reminding myself that the things they want me to do is for my own good – no matter how miserable. They don’t want me back in hospital to be treated for GVHD of the skin, gut, liver, mouth etc, etc – anymore than I do, and they want to make sure they have me in a safe and stable condition before our holiday in September. But I have to say – I did feel like I was in the headmistress’s office… all the laughing and joking soon stopped!

I can’t believe it… after everything I have had to put up with!!! Anyway, after a bit of a moan and a grumble, and having had my bloods taken again to make sure there is nothing else sinister going on, we set off to the pharmacy to order more Betnovate, and followed that with a detour into Chichester to a lovely little restaurant called Woodies where we stuffed our faces. 🙂