Wednesday… How’s my PET?

Off for PET scan number 22! (I had to go back over some previous posts to check – and they were interesting – and scary – reading!) Sadly Margaret, the centre manager, was away, but the procedure is pretty routine – injection of the tracer, rest for 90 minutes, then under the scanner. One thing I did notice was that I was unable to lift my arms up over my head which is the usual ‘pose’ for the scan. This was tangible proof of some loss of mobility, however having my arms by my side was a lot more comfortable.

I have been suffering from a bit of a cold and a sore throat, so before the scan I rang the day unit at Guy’s to see if I should go over. However my notes are at St Thomas’s at the moment, so I was advised to go up to the day unit at St Thomas’s. It was quite pleasant going back as all my initial treatment was there, and I saw Debbie, one of the nurses who looked after me on Samaritan ward. Sadly all haemotolgy is moving to Guy’s and the day unit will be closing. It isn’t in a very good location as it is surrounded by laboratories, and the consulting facilities are limited – but the views are good! I was seen by a new (to me) Doctor, Jenny, who pronounced my lungs clear, but prescribed some Co-Amoxiclav (an antibiotic) as a precaution.

So a quick trip to pharmacy and I was on my way home. Now I have left the Navy, I pay all my travel and prescription costs – so first thing this morning I was buying a railcard, and I am looking at the pre-payment certificates for medicines!

I expect to get the results on my next routine visit – unless there is anything untoward, when I expect i will get a phone call!

But in the best traditions… Onwards and Upwards!

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Sunday… Snowy – but no Tintin!

Snow sceneSkipping quickly past the famous Belgian reference (the other famous Belgian being Hercule Poirot) this was the scene that greeted us early yesterday morning.
I know we weren’t alone in getting this snow shower, but it is very rare and it has been several years since the garden looked like this. Snow sceneWe were out most of the day, but it was starting to melt as we left, and it had all gone by the time we arrived back home this evening. Still it was very pretty while it lasted, but alas not enough time to even think about making a snowman! There are some more snow scenes here and here in the gallery. (And I must update the gallery with some of the recent pictures of Olivia)
The reason we were out was for a family Oliviagathering – there are several family birthdays in March and April, so it was an opportunity to get together. Although not a March Birthday girl, Olivia was in good form, so I had to include this photo of her, with Vicki!
On the health side, I have put on a couple of Kg in the last 10 days, so weightwise, definitely upwards, and I also had a long chat with Simon on Friday. If you read his comment on Thursday’s post, you will see that he has had an abnormal CT scan, showing an enlarged lymph node in his chest. The problem with CT scans is that while they show the organ’s outline, they don’t show why it may be enlarged, or what is going on in there. Lymph nodes can enlarge for lots of reasons, but a PET scan can determine if there is abnormal cell activity in the node. So Simon is off to have another PET scan, which will show if there is any suspicious activity in the node. If there is (and we all have our fingers crossed that there isn’t!) it can be treated, and if there isn’t, then it is an important reassurance. That said, I know how waiting for results can prey on the mind – Simon, we are with you all the way – and hope that you too will continue…

Onwards and Upwards!

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Tuesday… Happy 21st..

PET scan! I was somewhat surprised to get a text message in a meeting yesterday to say that St Thomas’s had phoned to see if I was available for a PET scan today at 1:40pm. I knew that one had been ordered (as I said in the post after the last visit) but I was expecting it at the end of October or early November! So it was a quick trip to work this morning to re-arrange my diary and then it was up to London again.

The PET scan itself was much as before, a minor change in procedure in administering the tracer (to reduce the exposure to the staff) but otherwise much the same. I did reflect that I would like to meet the designer of hospital gowns, so I could shake him warmly by the throat, but I think that whenever I have to put one on!

After the scan I called in to see Margaret, the unit director, but sadly Sally, the radiologist, was out (I did look for you, Sally). It was then a quick walk to Waterloo and the train back home.

I’m not sure when I will get the results – my next check-up is in October, but I’m sure I will hear if there is anything sinister!

So with a few digits crossed – Onwards and Upwards!

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Friday… PET scan 20 completed!

And it was up at silly o’clock yesterday morning, for a quick breakfast before starting my pre-PET scan fast! Then back on the well worn path to Guy’s again although actually a slightly different path as the trackwork NetworkRail are doing round Basingstoke meant that I travelled a different route – but that is by-the-by.

The morning clinic followed the usual routine – bloods, a chat with the registrar (one I haven’t seen before – just returned from maternity leave and whose name I didn’t catch!) but she did confirm that the sore mouth and the slight skin rash is almost certainly GvHd – which is a bit of a relief – not that GvHd is desirable in itself, but it is evidence of the very much desired Graft Vs Lymphoma effect. As was pointed out, the Holy Grail of transplants is to get the GvL without the GvHd! After that it was a quick chat with Rachel – the fierce (not really!) dietitian, who beat me up severely for losing a couple of Kg since last time. However it isn’t all bad as I seem to be gaining strength as my grip is stronger, so I am building up muscle. Still – time to up the supplements.

That was followed by a trip to the bank and then the pharmacy for another bag full of creams and potions for the inevitable skin problems. If I didn’t get my prescriptions paid for (retrospectively by my employer), I’d think about emigrating to Wales.

It was then time to nip over to St Thomas’s, and my friends at the PET centre – particularly Margaret, the Unit Manager, and her team of radiographers! The PET scan was pretty routine, and I finally left at 4:50 to get the train back from Waterloo, grabbing a much needed sandwich from M&S on the way! (Selection was easy – look at the packets of the likely candidate sandwiches – ie, those that aren’t spicy – and choose the one with the most calories!) Overall not a good day on the calorie intake because of the fast.

My next appointment is next Thursday and I am going to have to concentrate hard on not thinking about it. It is going to be a bit nail-biting waiting for these results – a lot rests on them. Still, it has to be done. If it is bad news, it won’t get better for not knowing!

There have been a couple more comments on the patientline scam in this blog, and I have copied them to www.paytientcrime.org.uk and I have closed the post here to further comments. Please post them on the new blog!

Finally, fellow blogger John has been continuing his battle with bureaucracy… don’t let them get you down, John.

Anyway, with fingers crossed, Onwards and Upwards

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Sunday

First of all, my apologies for the delay in posting – don’t worry, I am OK, we have had a busy couple of days! And thank you all for your posts. For those that haven’t posted comments before, your first comment goes into a moderation queue (which is why it doesn’t appear immediately) but once moderated, subsequent comments should appear straight away.

We went up to St Thomas’s on Friday for my PET scan – number 19 – which the staff think is a definite record! It was great to see Margaret, the unit manager, and Sally, who is one of the radiolgists on the unit, but I was also greeted like a long lost friend by the lovely technicians that administer the tracer, and the receptionist! I was delighted that Viki, the specialist transplant nurse, was able to get over from Guy’s to see me. Viki has been a tower of strength over the last 8 years – really from first diagnosis, and through the various procedures, and it was Viki who gave me the donor stem cells last year. Friday was (sadly for Guy’s) her last day at the hospital – she is moving on to pastures new at King’s College Hospital – a great gain for them, and I wish her all the very best in her new venture – and my heartfelt thanks for all that you have done for me.

The PET scan itself was uneventful – the usual 90 minute or so wait while the tracer is taken up, followed by the scan itself, taking about 30 minutes. The scan seemed quite quick – perhaps I fell asleep! I certainly felt very relaxed! We finally got home at just before 5pm – it seemed a long day!

OliviaYesterday was quite busy too. My friend (Partner-in-Crime) and fellow Blogmaster, Mark, came round for a cup of tea, then we had a boys’ trip out to Currys and PC World. Nothing too exciting (a new vacuum cleaner, a Freeview box and a browse) but it was good to get out of the house for a while. My strength is certainly returning, as is my appetite Olivia(I am really enjoying bacon sandwhiches again – and this morning I had bacon and sausage sandwiches!) I need to put on a bit of padding – sitting on a wooden chair is quite painful!

However, enough of the talk about about me – I know you really want to see some more photographs of Olivia! Richard asked if I could put any video up – I am investigating that. OliviaOne word of warning – one of the photographs shows me just after I had come out of hospital. Let me assure you that I now look a lot less fragile than I did when the photo was taken! (And my hair is starting to grow back!)

So here we are…

I hope you like them!

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Thursday… t+47 and PET Scan 18!

As I reported yesterday, I rang St Thomas’s to see about my appointment – to discover that it had been scheduled for this afternoon! I had a long chat with Sally – one of the lovely radiologists on the PET unit – about the pain problem when I am lying down, and the thoughts were that I could have a strong pain killer, or if that didn’t work, I could have diazepam (Valium) which would also work, but leave me feeling woozy – but in either event, they recommended that I should be accompanied so they were free to use whatever method was appropriate.

So this morning, and feeling hungry (I was supposed to fast from 8am, but in practice it was from last night) we set off for London for the 2:15 appointment. Once again greeted like a long lost friend, and after chats with Margaret, the unit manager, I went into the prep room for the tracer injection and to discuss the pain relief. The option chosen was Oromorph – an oral morphine preparation, which was planned for about an hour before the scan. (The tracer needs to be given 90 minutes beforehand).

So time ticked by, and eventually I had 10mg of the Oromorph, but probably less than an hour beforehand, then into the scanner room to lie on the bench. The team were lovely and had arranged to reduce the scan times by concentrating on the bits of interest, but even so the scan was scheduled for 20 minutes. Alas, I had only been lying down for about 3 or 4 minutes when the deep, dull, throbbing ache started just below my left shoulder blade.

Again the team were wonderful, and came to talk to me to take my mind off it, put on some music, and gave me a countdown. They did offer to stop the scan for a break, but having started, it seemed a pity to stop the sequence, so with a bit of gritted teeth and some careful pressure relief, I got through the 20 minutes. My concern was that I might have wriggled too much and impaired the quality of the scan, but I was assured that technically it was good. I say technically, because there was no medical opinion given, although I did look at the scans and I thought I could see a couple of hotspots (not surprising) but then I am not an expert, so my interpretation isn’t worth much. All I could tell was that it didn’t look as if I was lighting up like a Christmas tree!

I did feel pretty weak on the way up – the result of the fasting, and my blood sugar was pretty low (4.7mmol/l – where the normal range is 4-8mmol/l) but I had a bite to eat on the way home and felt quite perky by the time we got back.

So a slightly out-of-the-ordinary scan, but the team were great (as usual) and put up with me being a wuss without complaint!

My next appointment is next Thursday when I should get the results – from a tutored and knowledgeable eye, so until then, Onwards and Upwards!

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Friday… PET scan 17, and other sundry things

And it was off again to a full day at Guy’s and St Thomas’s this morning!

The day started very well when I bumped into Robert Carr as I was on my way into the Day Unit. You may remember that I was placed under Robert’s care when I was first diagnosed, and I have remained with him outside the main treatment regimes, although he is a Leukaemia specialist, rather than Lymphoma. However I haven’t seen him for ages, although he has been following my progress and has been at the MDM (Multi-Disciplinary Meetings) when my case has been discussed, so he has had a say in my treatment. Anyway, it was good to talk to him, albeit in a corridor, and I always feel much better having seen him!

So it was into the day unit, where it was good to catch up with Orla, Emma, Karen, Liz, and of course Viki. Unfortunately the one person we were missing was the stem cell scientist, Justine, who had been delayed on the trains, so while we were waiting, I nipped down to re-aquaint myself with pharmacy for some steroids.

Now these steroids are “just-in-case” drugs (‘only’ prednisolone) should the GvHd kick in sooner than expected, or the lumps start getting bigger, but I wasn’t told that, so I took the first two when I got back to the day unit! Oh well, it seems no harm was done!

Then I had some IV Piriton, just to help prevent an acute reaction, and the cells were infused – not much, about 20ml. I had to sit around for an hour, again to make sure that there were no untoward side effects, (apart from the drowsiness caused by the Piriton) and it was off to ENT for the check up, although before that I did have another chat with Linny about things. (In the room I call “The Bad News room – it is a side room very tastefully furnished, with pastel painted walls and subdued lighting, and I alwys think that is the room used to break bad news. I don’t suppose it is really, it is just a quiet and private room, and unlike an office. I have shared the joke with the staff in the past!)

The good news from ENT is that wound is healing nicely, and there doesn’t seem to be any complication. The bad news is that the swelling in my mouth, which is still causing me to sound a bit slurred, is caused by more enlarged lymph nodes, mainly my right tonsil and the right side of my tongue. Not so good, and I am seeing them again in two weeks. I will also be seeing Linny before that for the results, and possible further courses of action.

I went and sat in the day unit for an hour before going to St Thomas’s for the PET scan. I have said enough about PET scans in the past, and this followed the normal pattern (except that I already had a canula in from this morning’s infusion which was then used for the tracer). The scan itself was a bit touch and go at one point as the unit had had problems making the tracer, but they managed to fit me in, albeit a bit later than expected. Still it was lovely to see Sally (consulatant) and Margaret (Unit administrator) again, although perhaps not under these circumstances…

I finally left at just after 6 this evening to get the train home. Busy or what?

I am away tomorrow doing some stuff with LeukaemiaCare, but I’ll be back Sunday before going off on a small break. I’ll try and post something before I go.

Meanwhile… O&U – I think!

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Wednesday… still got fingernails!

Not a lot to report today, except that I have written a side page about PET scans. (And it is a lovely sunny afternoon)

However what prompted this post was a look back through the blog archive – I stumbled across the entry for January 31st – the day I came out of isolation! Was it ‘only’ six weeks ago I went for a trip down to get a paper – and had to lie down afterwards?!

I also note that it was just after the weekend when Mark’s ADSL line had problems, and I said that I would move the blog to my servers ‘when I got out’ which I hoped would be at the end of the week. Of course it was delayed by a week and the transfer to my servers didn’t take place for a month after I was released! Just shows how weak I was, and how much progress I have made since then!

Off to Dive Club this evening!

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Tuesday… my (13th) PET scan!

Yes – it really was the 13th PET scan since this all started back in 1999! Makes it over 2 a year!

Nothing really to report today – it was just the scan, but part of the procedure involved fasting from 6 o’clock this morning. In practice meant from dinner time last night! (I’ll write an ‘About…’ page to cover the PET scan itself). My appointment was for 12 noon, and lasted just over 2 hours, of which 30 minutes is in the scanner, so I was a bit hungry by the time it finished. The healthy ham salad roll, followed by the decidedly unhealthy large iced doughnut was very welcome!

I guess the main diet over the next couple of days might be finger nails while I wait to get the results 🙂 – no – I am reasonably relaxed about it – honestly! So – until Thursday…

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