So… Where I Am At!

On the 30th July it will be a whole year since I was admitted to Southampton for my bone marrow transplant, and all is good!

I know from my private messages, and friends, that people are watching my journey, and as I haven’t blogged for a while I thought it was time for an update… so here goes!

I now have 100% Jane’s bone marrow and blood group, but I only have 78% of her immune system, which is not where the consultants at Southampton want me to be. They need me to be 100% as a precaution really – because my own immune system couldn’t deal with leukemic cells, which got me into this mess in the first place! Anyway, that is the reason I have been having lymphocyte infusions, which are little top ups of Jane’s cells.

However…this little technicality was the reason for what happened yesterday, because I have now had all the cells that were frozen from the original collection, but I still need more lymphocyte cells! So Jane was asked to donate again, and thankfully agreed!!

She had had another medical last month and was good to go, but since then she had been to Turkey for 2 weeks, hence the tan, so I was desperately hoping she hadn’t picked up anything. She and David, her loyal and supportive husband, stayed at a Southampton hotel on Wednesday night as she was booked for the cell collection early on Thursday morning, and when I spoke to them it sounded like they were having another holiday. Unbeknown to them though, Countryside (my employer) had agreed to give me a couple of days off so that I could be there to support my sister just like she did with me last year – and I was desperate for it to be a surprise. It was so hard speaking to her at the hotel and not letting the cat out of the bag!

They got to the hospital at 8am, then to their surprise I rocked up at 9!! It was great to be there with her. Until then I wasn’t even aware that she had hurt her back and was in great pain – but she still managed to soldier on. She had checked with the hospital first and they had offered to postpone, but she said ‘No’, for which I am really grateful as I am booked in for the next top up on the 4th August and it has all been arranged!

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Anyway, I arrived just before she went to theatre to have the lines put in. They took her up in a bed due to her back, and I felt myself welling up as it brought back all sorts of memories from last year. Once they brought her back I took a few pics and a little video of the cell collection machine at work – which also shows my lovely supportive brother-in-law looking completely ‘not bothered’ that his wife is hooked up to a big spin dryer!

But I have to say…my sister… Jane Cochrane, the most kind, uncomplaining, selfless person I know. I count her as one of my best friends as well as my sister – and I know that if we weren’t sisters I would still want her as a friend!

Love her!

By he way – I have put myself forward as a ‘voice’ for Leukaemia Care, so you could be hearing a lot more from me 😉 xx

Feeling Sorry For Myself

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Following on from my day at Chichester, yesterday I went to Southampton to have some more of my sisters cells (the last in the freezer).

As we were walking to C7, I spotted Darren, the most fantastic nurse ever – who had sat with me on the side of my bed and held my head whilst I ‘chundered’ everywhere while I was in for the transplant. Not just that, he went above and beyond his duties to make me feel ok! He was so pleased to see me and told me ‘you have made my day’, it made me a little emotional! I had forgotten he had never seen me with hair and they do, in bone marrow / leukemia transplanting, see a lot of fatalities! So to witness and see a patient you have cared for with a life threatening disease who is now skipping along with a ‘costa’ in her hand must be satisfying.

Joan was running an hour late as the person before me had tougher veins than me and they couldnt get the canular in, selfishly I hope mine is a breeze.

In the hour that I am waiting… again… I see loads of staff I know. It’s like a school reunion, and then someone I was dreading seeing turns up. My CONSULTANT! I have coloured my hair which I was specifically told not to do, and I had already decided that I would wear a wig for my appointment with her on 2nd July!! “Hi Lucy you look great”, she says as she is looking at my forehead. I respond with, ‘You are looking at my roots, obviously I have had it done without touching my scalp”. She asked ‘Has it made you feel better?’ so I replied – ‘No, you did that’, then she winked and off she went.

To all of you reading this going through transplant, they can give you all the advice and they are going to be over cautious, but everyone is different and I am now making some choices.

In I go, love Amy – straight in with the needle, canular, drip, IV, no probs, we go for the right arm as the left is bruised from last week and I have a little pillow behind my lower back as that still bloody hurts from yesterday!!

Out of the Dalek…
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come the lyphocite cells… “bloody hell thats a big bag”, yes we are upping the dose.

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I won’t bore you anymore, but just to say I have felt like SHIT today, as although Chemo is my friend it is also my enemy and again the knock on effects from Monday has given me horrible memories where I have felt sick all day and exausted as once again I have been poisoned. On top of that my sisters cells are finding their way around, and my insides ache! I hate being the sickly child, so the answer tonight has been a packet of salt and vinegar crisps (you lot that have had chemo will understand) and a glass of Rose!!!

Although, I know, what I have had this weak is all good and what needs to be done – did I really need my spinal fluid, tampered with?

By the way I do stink of the preservatives, but back to work tomorrow!!!

Lumbar Puncture with Chemo!

Just when I ‘think’ my life is back to normal and I can put the last year to rest!! BANG procedure after procedure! Today I endured a lumbar puncture with chemo, shit it was soooooo painful I will explain (more for people following my blog, that have the same early stages of treatment) not the sorry vote! I was slightly worried about this, which is unlike me, so consulted my friend Stacey, who I have met through my blog and has only come out of Southampton recently, so is behind me in treatment, but has had one and told me it is not as bad as bone marrow biopsies, of which I have had 7, also my consultant confirmed this as well, but hey everyone is different. How it works is a hollow needle is inserted between 2 of the spinal bones to take a sample of the spinal fluid and to inject chemotherapy in case the leukemia has spread to the spinal fluid, running into your brain! NICE!

My faithful, supportive Zig took me today and I skipped along quite merrily, resplendent in matching grey and pink, thinking it will be ‘A walk in the park’ and managed to stop off at ‘John Lewis, at home’ en route.

We arrived at The Fernhurst Centre, my old address, it was banged out with sick people reminding me! Anyway it wasn’t long before I met up with all my old chums (nurses, axillary, sisters, matrons, receptionists, cleaners etc) and was having a lovely social time, for any of you reading this, I Bloody loved seeing you all today and am so grateful for everything you have done for me!

The Fernhurst was so busy, as cancer is on the increase, that we waited for an hour and all the time I was thinking ‘I do hope Dr Janes isn’t too stressed and has had lunch, so holds that needle bloody steady.

As I go into the treatment room, I so wish I am about to have a facial or even a bit of waxing, Lizzie arrives, I love her she is Staff Nurse and last time I saw her she was 8 months pregnant, now slim as a pin, which I comment on and she is quite beautiful and informs me she is wearing big tights and pants, this puts me at ease and I relax, explaining my perfume and outfit.

Dr Janes arrives and the chat and the smile is wiped completely. Entinox has been wheeled in and I start to slug and enjoy, I am then told to curl into a ball as tight as possible, as the more curled the less pain and easier to insert needle, I try so hard, but have slight pain in my hip, anyway off we go, I am fairly high by this point and in goes the local anaesthetic, shit I say in between burping that is hurting, yes Dr Janes replies I cant get in, curl more as it widens the spinal cavity, I now want to cry and hate everything! eventually in and all chemo pumped through and needle removed, I then have to lie flat for an hour for the chemo to reach my brain! the side affects are a headache and for that drink plenty, of which I am doing 🙂

Tomorrows another day and that will be at Southampton having another infusion of my darling sisters cells, which are the last in the freezer! She has been called, once again, to go back in to give more! HOW WILL I EVER REPAY HER?????

I’m Back!!!

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2014 was a hard year, but we’re now over the worst. I cannot begin to tell you how hard it has all been. I would call it ‘relentless’!!

With other diseases and cancers you might have to have chemotherapy, radiotherapy, drugs, and even an operation – but this is blood cancer and I had no idea it would be so constant. I had no idea what I was in for when Doctor Janes asked me: “We need your total commitment, can you do that?”, I just thought “Of course, what’s the problem?”

So let’s go back to last May. I still didn’t even realise I was ill, and when I was admitted to St Richards in Chichester I just thought they hadn’t thought of the right place to put me yet. It was only on the second day when the nurse said, “Don’t you realise you have blood cancer?”… that it suddenly registered, and I cried for the whole afternoon.

When I finally got to Southampton I was totally shocked. They had to explain that they were going to nearly kill me in order to get me better, and I can tell you… they were not kidding! I was there for five weeks. During the period of isolation I asked them twice to stop the treatment – but they counselled me, and chatted, whilst I threw up everywhere and was totally miserable. I cannot explain the pain and the sadness I felt. I’ve never written this down before as I didn’t want Charlie to know how difficult it was. He struggled with my illness, and combined with the death of his dad at the start of the year it would have been a lot to for anyone to handle.

SO!!

Here I am, and today I got the results of my 6 month review. My bone marrow (which is where the disease was coming from) is now 100% Jane’s. My immune system is coping well and recovering but it’s still part mine and part Jane’s, and they want it all to be Jane’s so it knows to attack any potential recurrence. But… the main thing is, I have an immune system, which meant some different answers to my questions!

  • Q: Can I dye my hair? A: Still no, definitely not while having lymphocyte transfusions.
  • Q: Can I wax my lip? A: No, it can aggravate GvHD.

I was slightly disappointed at the reaction to my line of questioning, but…

  • Q: Can I go back to work? A: Yes, from the 23rd March but not weekends and don’t over do it!
  • Q: Can I go on holiday, preferably skiing? A: Yes, it would do you good but keep to Europe.
  • Q: Can I fly? A: Yes, cannot see why not, but not in school holidays and keep to Europe.
  • Q: So I can’t book to go to Barbados in September then? A: Why not? Just don’t get sunburn and use factor 50.
  • Q: Do I have keep trekking all the way to Southampton for each appointment? A: No, we will set up shared care with Chichester so we only need to see you every other month.
  • Q: Must I keep boiling my water before drinking it? A: No, don’t overdo it but you can start phasing that out now.

Zig and I were so shocked and excited I actually spotted him skipping in the corridor as we left the hospital. We then found we couldn’t talk and were stumbling over our words in the rush.

We have just been given the green light to play again!!!

 

 

A Quick Update…

I just had a call from Kate my consultant, as I asked her to call me with good or bad news, once she had looked at my bone marrow following Monday’s mega tests, and…

It Is All Clear

I am officially still in remission!! Also one of the blood test they did to detect early signs of leaukemic cells is all clear too, amazing news 🙂

It’s Been 6 Months!

Can you believe it is 6 months since my bone marrow transplant, so I was back in Southampton today for a major check-up?!?!?!!!! A pile of investigations and procedures including:

1.     Yet another bone marrow biopsy, which is where they find out what’s really going on!! This was my 10th and they’re really painful, so this time I took the consultants’ advice. She told me before that the kids love the gas and air pain relief and can’t get enough of it, so I knew I had been too conservative, and this time I slugged it back!

Zig and a nurse were in the room while Kate the consultant was doing it. She was chatting away, and I just had that ‘I’ve drunk way too much and can’t even talk’ feeling – the first time since last July! I had taken myself to another level and bloody loved it, I couldn’t speak!!!

2.     12 tubes of blood for various tests, taken by a fantastic nurse who hit the vein first time. These were to see who knows what, but apparently they’re all really important. There’s even one to check out why I am carrying a tiny bit of the glandular fever virus – only a tiny bit but they need to keep an eye on it.

3.     The Pentamidine nebuliser!! We know about this one – it’s the vile stuff that made me throw up the first time I had it, but now I’ve got it down to an art form and bang it in in 20 minutes flat. Anyway – it keeps viral pneumonia at bay and I have to have it every four to six weeks until they say otherwise.

As usual I asked about going back to work, going skiing, dying my hair, having a drink – the usual stuff!! And as usual it was a BIG FAT NO! They could probably write my script by now, I could definitely write theirs. Undeterred, I shall be asking all the same questions again in a few weeks when I go back to clinic because they’ll have all the results of the tests and bone marrow by then, so perhaps things will have changed! Bet they can’t wait to see me!!

Anyway – I don’t want to tempt fate but I apparently only have one more bone marrow biopsy to be done, and that’s in 6 months – after that they can tell everything they need to from just the blood tests.

In the meantime let’s hope I don’t get a call tomorrow – because they only call when something’s not quite right!!! I feel great and am chomping at the bit to get back to normality – but I only know I am ill when I go to Southampton… because they very kindly remind me!!

The Lymphocyte Infusion

It sounds like a relaxing cup of herbal tea, but really it’s a nasty little top up of donor cells that will help bring my new bone marrow up to 100%, as well as boost my immune system. So now you know!

This appointment has been in the book for a few weeks, and I hadn’t really thought much about it. Off we went to Southampton for our 12 o’clock appointment knowing that it would only take about 30 minutes once we got there. Wrong!!! We arrived early, to be told they were running late. Not a problem, we didn’t have anything planned – but it gave me time to dwell on the fact that I no longer have my line so they would have to put in a cannula. No doubt you will have already picked up that I hate needles, and this was hideous. Amy had three goes at my feeble veins, and with Zig holding my hand I held back the tears and felt very sorry for myself. Eventually she gave up and had to call in David. Bless him, Jane spent her day with him when she gave her cells and he was excellent. A bit of a jab about and he picked up the vein in my right hand!

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Not Happy!!

Anyway, the lymphocytes came out of the portable cryogenics deep freeze thing and were a tiny dose that only took a few minutes to drip in once thawed out – but they are potent! There is a risk that they will fire up some more GvHD so I need to keep a careful watch over the next few days, but long term they will help everything, including fighting any bad cells – which is what my old blood couldn’t do!

There is a side effect though – the preservative used to store the cells stinks, and the smell is now oozing from my pores and breath and is apparently likely to carry on for about 24 hours. According to Zig it smells like a feshly opened pack of chopped liver. As if I didn’t feel sick in the first place.

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Trying…

I also had a good chat with Joan who kindly told me that I would likely have about four of these exotic infusions and, while rolling her eyes around, she said that Dr Duncan is not the right person to ask about having a drink. Well I did… so too late Joan! xx

The pre-med paracetamol and antihistamine knocked me for six a bit and I had a good doze on the way home, but I had cheered up a bit from the whole needle experience by then!

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OK – not so bad!