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!

 

 

 

The best news all year!!!!!!

For Andrew: The results are in, I am much better now thank you!

For everyone else… The results of the tests from the past few weeks are in, and I am disease free!!! No leukemic cells!!!!

I now have 90% Jane’s bone marrow and 30% of my immune system back. 90% is great for this stage but they are going to give me a top up of Jane’s lymphocyte cells on 9th December, just to get me a leg up to 100% HER, and this should help prevent the chances of it happening again!! The 30% immune system is all ‘memory’ which means I should now be safe from the illnesses and infections I have had before, although I still have to be careful.

So in answer to everyone’s question ‘has the chemo and transplant worked?’ YES IT HAS and I have my life back, THANKS Jane!!! And to all of you, supporting me and encouraging me on, I can’t tell you what it has meant!!! As what I have been through, I wouldn’t wish on anyone!! Whilst I am doing my Thank You Speech I would also like to thank Zig, as he has been to all of my appointments with me and held my hand every step of the way! I think, at times it has been harder for him! Thanks bebe!!!

I did manage to ask the question ‘will I be able to have a glass of red at Christmas? And the answer… POSSIBLY!!!!! I am taking that as a defo YES, The Kings Arms, Billi, here I come, Christmas Day!!!!!

I’m still not allowed out for lunch for dinner, but I can have fish and chips from the chippy!! I am definitely ‘on the up’! xx

Day 102…

Thanks for all the support messages on Facebook this morning. They were a welcome distraction as we bombed down the A27 towards Southampton, in pouring rain, for my 3 month bone marrow biopsy. With the pentamidine first this morning was never going down as one of my favourites!

So first up… the pentamidine inhaler. Bloody awful stuff, but vital as it stops PCP which is a particularly nasty strain of pneumonia with a high mortality rate. That knowledge doesn’t make it any more palatable, and after about twenty minutes and a nasty coughing/choking fit I was done. I sauntered nonchalantly back to find Zig in the waiting room, pleased that it was over!

That was followed by a quick interlude for coffee and sweets to take the taste away, then straight in with Kate for the bone marrow sample. I have to say, that is one of the most painful procedures going. If you don’t know what’s involved, imagine lying on your side while someone administers local anaesthetic through a number of smaller needles and then jabs a really big needle into your back and keeps on going until they have pushed it into your pelvic bone!! The gas and air really helps though, and perhaps even more so this time as one of the nurses said it’s like drinking 6 pints of Stella! After nearly four months of no alcohol that was the highlight moment of the day!

I haven’t really had much contact with Kate before as she was Jane’s consultant, but she was fabulous. So knowledgeable and really great at explaining things.

I had noticed a bit of a rash on the side of my hands over the weekend, so asked her about it. Apparently it’s a bit of Graft Versus Host Disease, which set me off into a bit of a panic. But, she was quite pleased because it’s a sign that Jane’s marrow and immunity is taking hold and a by-product of it having a go at me is that it also attacks any leukemic cells that are still swimming around, making the whole possibility of a relapse less likely! So, apparently ‘a little GvHD’ is a good thing, but a lot isn’t. In fact, so much so that if it hadn’t appeared they would have given me more of Jane’s cells to provoke it. Anyway – I now have some creams to apply, which Zig kindly pointed out are used on horses, what a charmer!! Fingers crossed then it will not spread and just go away at some point.

Now we wait for the results of the blood tests from last week and todays bone marrow cultures, all of which I should know next week. But according to Kate this is now the difficult bit where they have to fine tune the procedures, tweaking the mix of this and that, to get the best results. There’s still a long way to go, and a visit to hospital always brings me down to earth with a bump.

Today, whilst chatting to another leukaemia patient in the waiting room, I have heard about someone who was recently diagnosed with Leukaemia but didn’t pass the breathing test so they couldn’t help him. He died last month. Another post-transplant patient wasn’t ‘patient’ and caught a cold which put him back into hospital where there were complications and he is now in a wheelchair, and another chap who had really bad GvHD and had to start all over again. Two years later he is still taking five times as many pills each day as I am and can’t drink alcohol because of the damage the drugs have done to his liver. The remarkable thing is the way he stands there and says, ‘but I’m ok with that – I’m still here!’

But… they are pleased! I am still doing well, I just need to be patient and careful. It’s a bit of a fucker that I really don’t think I will be allowed to have a small toddy at Christmas – but if that’s the price of having my life back I can cope with it!!

A Late Update

My updates have been getting slower, partly because there’s not a lot to tell, and partly because I am now just feeling trapped and unable to do anything – so have resorted to washing, ironing and cleaning – in addition to becoming addicted to Jeremy Kyle, Loose Women and The Chase. I was going to give up soaps, but now I’m not only hooked on Corrie, but have become fairly involved with Emmerdale. I haven’t quite succumbed to Eastenders as I just can’t cope with all the shouting, well… not after Jeremy Kyle!!

So, last week. Friday was the three month day since my transplant. I can’t believe it has all happened really. When I look back it only seems like yesterday that Dr Janes was saying “I’m sorry to tell you…”, but when I think about the journey it seems to have been going on for ever.

I now only have to go to Southampton every two weeks, but was dreading it this week as they have to take blood from my arm since I had the line out. Last time was such a nightmare, causing tears and everything. This time my heart sank when I realised it was the same girl taking the blood, but, she got it in one!!! I think she was a surprised as me, and once she had taken twelve buckets full (it might have been test tubes), she even thanked me for letting her do it. Anyway, they have carted it all off to do who knows what with. Apparently they needed a lot to do every test imaginable so they can get an idea of how things are going. They also check the Chimerism which tells them how much of Jane’s marrow versus how much of mine, so fingers crossed for more than 90% now I’m off the cyclosporine.

Next Monday (17th) we’re back off to Southampton for the 100 day bone marrow biopsy – so I’m looking forward to that!! It’s hideous, so I hope they have plenty of gas and air on standby, as well as a box of tissues to wipe my eyes with. Zig says I always look very sorry for myself after having a bone marrow sample taken, a bit like a small girl who has just had the back of her legs smacked by the head mistress!! Hmmph!!! We’ll then have to wait another 10 days until we get all the results of the blood and bone marrow tests, which should give an indicator of progress so far.

I don’t suppose for one minute it will give them an indicator as to when I can have a little drinkie. A month ago we asked if I could have a small glass of wine with a roast lunch and were told “not for some time” by the consultant. So when we went last week we check with the senior post transplant nurse just in case the consultant has it wrong, and were told “absolutely not”. Next time we’re going to ask if I can have a small dash of brandy in my coffee as a bit of a warmer – but I’m not holding out for good news on that either.

On the plus side, I still feel OK, my hair is growing (slowly) and I have now started using a bit of some sort of styling wax stuff that I found in the boys bathroom cupboard.

Frustrating, but still on the up!

Yesterday I was back at Southampton and hated my day! It was by no means the worst day I have had there as my time on the ward was the most difficult! But…

To start with the oncology unit was really busy, the consultants were all running late, and for the first time since May I had to have blood taken from my veins as all the lines, (my built in pipes), have been removed.

Due to the vile amounts and strength of the chemo I had pre-transplant, my veins are now smaller and they weren’t that big to begin with. A young technician tried to take blood from both arms to no avail and then beeped the senior nurse to ‘have a go’! It took for ever and eventually I succumbed to a few tears – after all I have been through – pathetic, but you can probably tell that I was feeling a bit sorry for myself!

When I eventually emerged from the room Zig was there to do a bit of comforting, which I think caught him a bit off guard. Anyway…I got my stitches removed from where they had taken out my line, very straightforward, and my name was called to see the consultant.

Good news though! My CT scan is all clear, no sign of any pneumonia, hurrah! So I can stop taking three of the drugs and the cyclosporine. Now Jane’s immune system can finally take over! I hop up on the couch to have a thorough examination of my whole body as he is looking for any signs of graft versus host disease which can show up as a pale rash, and shows Zig the signs to look for on my back. I know I must not be ungrateful as I am getting better, but I am so sick of being pulled about and looked at! (At least I now only have to go for a routine check over every other week unless I start feeling anything wrong!)

We then asked a few questions:
Q: ‘Any chance of a glass of red with a Sunday roast?’ A: ‘Not for a while yet.’
Q: ‘When can I go back to work?’ A: ‘Not for at least 6 months.’
Q: ‘Can I eat salad yet?’ A: ‘Only if it is thoroughly washed in boiled and cooled water then dried.’
So I didn’t bother asking if I could go to The Honey Club on Brighton sea front for the night!!

After all that we go down a floor just for me to be shut in a tiny room where I have to inhale Pentamidine through a plastic pipe for 20 minutes. I really hate this procedure but it is to prevent PCJ (pneumonia) lung infection and I have to do it every month!

On our way back to the car, we picked up a Hot Chocolate from Costa to cheer me up and… the icing on the cake… that was bloody cold!!!

They said the recovery would drive me nuts, and they’re not wrong! 🙂

Lines out!!!

A quick follow on from this morning’s post… I’m now home safe and sound!!!

I have 2 neat little stitches where the line came out, which took longer to be removed than I thought! A bit like skinning a fish, the body tissue grows into/around the  ‘cuff’ on the tube which is there to stop it sliding out, so there was a little pulling and tugging – and waving of a bloody scalpel! But the anaesthetic held up to it, with only a little top up half way through. 🙂  (And I still hate those needles)

Jane’s bone marrow percentage has risen to 84%, still not quite where it needs to be, but going in the right direction and my cyclosporine has been reduced again. By the end of next week I should be off it all together… Yippee! Apart from making me feel ill, (they say I never really got on with it), one of the side effects is hair growing where it isn’t wanted!!! And as I am not yet allowed to a have a lip wax, I am starting to get a shadow!!!!

I should get the results of CT scan next Thursday which, fingers crossed, could mean the end of the anti-fungal drugs, and I’ll also get the stitches out!!! Oh yes, and I can drive again now!

My consultants are really pleased with my recovery so far and have said I am ‘way ahead’. My next bone marrow biopsy is booked for 17th November which is all important as it will show the level of success so far.

All in all – quite a good day out really. I know there’s still a long road ahead, but I am feeling pretty good, and without the tubes sticking out of my chest I feel like I am getting back to being me again. xx

Big Day…

Big day today, as we’re off to Southampton for my weekly check up and to have my ‘line’ removed!!!! Let’s hope it is less painful coming out, than it was going in!! Another step forward in my recovery!

Will also be having a CT scan to see if my lungs are clear of pneumonia!! And the consultant will be letting us know the percentages of my bone marrow, last time I had 78% Janes and 22% mine. What it needs to be is 90 something % Janes!

Am feeling a little scared, but am going to regain some positivity on the journey there…and imagine that beach in Barbados!!!!!!

a barbados beach

 

The weekly check up and Sir Roy.

Today has been my weekly visit to Southampton, and I am struggling to walk, lift anything, or sit down as I thought it would be a brilliant idea yesterday to do a ‘work out’, with my dear friend (personal trainer) Andrew!!!

I haven’t done any exercise, other than a few walks for a couple of months and am very weedy!! We didn’t do any aerobic stuff as didn’t want to pass out, and as my lung capacity is still a bit crap, so all lunges, squats, sit ups with a lot lighter weights than normal and for the first time in weeks I felt fantastic afterwards and am loving the pain!!!! Anyway didn’t dare tell my consultant what I had been up to, so hid my pain as best I could (see pic below, me walking with determination…)

The waiting room is packed with everyone that has had exactly the same procedure as me and we are all at different stages. Zig always comes with me and we have turned the visit into a bit of a laugh, as it is sooooo serious and everyone looks so miserable. Zig pointed out ‘do they not realise the NHS has spent 140,000 on getting them better and curing them, so you would at least think they look happy’!!!!

On the downside we asked if we could go to a friend’s birthday dinner on the 2nd November in a fab hotel and the answer was a BIG FAT NO! On the upside my line is coming out next Thursday and have been assured it will be easier than when it went in… which was 24th July when I cried and had to be consoled with a Costa and a Crunchie!

By the way, I watched the Pride of Britain the other night and just want to mention: I wouldn’t be here without this man!!! Thank you Sir Roy – from me and millions of others xx
Sir Roy Calne – resopnsible for the development of Cyclosporine

It’s Been A While

We seem to have moved into a dull and frustrating phase of the recovery. It has been two weeks since my last update because, to be honest, bugger all has happened. I’ve had two visits to Southampton since I last wrote, and neither have thrown up any surprises or much to talk about. They are continually dropping my cyclosporine dose to give Jane’s bone marrow a better than fighting chance, and I am feeling ok – just bloody bored.

I am able to walk further each day without getting out of breath, but I am not allowed to go anywhere! I still have my line in so I still can’t drive, and even if I could I’m not allowed to go anywhere!! They said the biggest problem for me would be the frustration, and I hate to say it… but, once again, they’re right. The only bonus I can think of at the moment is that I still don’t need to buy any shampoo, and there’s no chance of a razor nick as I still have absolutely no need for any ‘intimate’ shaving 🙂

A few people asked how Jane dealt with the whole process and how she is feeling now. Well, before the transfusion she had to give herself injections for five days to promote the production of stem cells which she didn’t find much of a problem. She said her bones ached a bit, but the docs said that was because she was producing too much marrow! Anyway, on the day she couldn’t give the cells from the veins in her arms as they are too narrow. This meant she had to be hooked up through a couple of plastic tubes inserted in her groin. It sounds horrible, but she didn’t feel a thing and the only side effect was later when she came to see me and was walking like Frankenstein’s monster!

Once the medical team had worked out they had enough cells the plastic tubes were taken out and she immediately felt fine. She didn’t have to stay in hospital overnight, and had no side effects – so was completely back to normal pretty much straight away. I don’t think she has given it much thought since!! I did put up a couple of pics of us both as the cells were being put into me, which was immediately after they were taken from her, and she doesn’t look too unhappy does she?!!

the donorimage

Anyway – since then she’s been for a quick Spanish break, had a weekend away in Bournemouth, been out with the girls, and come to visit… which is when we impressed ourselves with our technical selfie expertise and took some photos just to show you she is still fine!!

Speak soon… xx

Weekly Check Up

Yesterday was check up day back in Southampton, and all seemed to be going well!

They are still pleased with my progress, and Joan (post transplant head nursey bod) managed to deal with a little lump of dried blood that has been hanging about since I had the line put it. It turned out to be a scab that had formed over a small stitch that wasn’t taken out as they couldn’t see it – due to the scab!! Anyway, all sorted much to our delight 🙂

That was followed by a meeting with Debbie Richardson, my consultant, who decided to send me into a bit of a meltdown. (Well, nearly). They have been reducing my Cyclosporine dose steadily which I thought was a good sign. But… as it turns out, it’s because there’s too much of my bone marrow left, and not enough of Jane’s yet. You can imagine my reaction… I already feel sick all the time anyway! Apparently my blood is now 78% Jane’s, and 22% mine – but they are looking for it to be in excess of 90% Jane’s otherwise it’s possible my marrow will take over again. Not what we want – and I was left panicking that I was going to have to suffer the whole bloody process all over again. The other problem is that reducing the cylosporine dose increases the chance of GvHD (Graft versus Host Disease), and I really don’t want that.

Luckily Zig was with me and spotted my panic before it really got a grip, and between him and Debbie they explained that everyone is different and it’s not an exact science. There is a lot of fine tuning to be done. Also no sign of GvHD so fingers are still well and truly crossed. This morning I had the follow up call from Joan about blood counts etc. All still doing brilliantly and nothing has gone into meltdown yet- so far so good – and cyclosporine reduce to 50mg. On which subject…

After my meeting with Debbie I had to go to the pharmacy to pick up last week’s drug order, dropping off this week’s top up prescription on the way. At the pharmacy there was no record of the order, so I had to go back to Debbie to get another prescription. Don’t forget, Southampton General Hospital is massive. At least 100 miles from end to end, or that’s how it seems in my state. Got back to the pharmacy having dropped off the replacement prescription at the Oncology  department, and was given the pills. As I was there I thought I would also get the stuff I had ordered for next week, the oncology people said it had been processed, but once again there was no record of it in the system. FFS!!!

Anyway – today’s another day and I’m feeling a bit better again. I don’t know if it’s the weather, but I am not getting as cold as I was so I have popped on a lovely little Cath Kidston number!

kath kidston