Sunday 9th June… some sun at last!

It was certainly wet wet wet for the last couple of days, and before that it was quite windy, which was a pity as I was supposed to be diving on an old Mulberry Harbour as part of the D-Day activities. Sadly it was too windy to launch the boat.

Other than that, little else to report. It is a month since my last check up, but the team don’t need to see me, but just require a blood test. I’m quite busy this week (more later!) so I had the blood test last Wednesday and picked up my next month’s supply of Ibrutinib. No comments from the hospital, so I assume that the results are all OK. 🙂

And that’s it for this post! Off the enjoy the sun – Onwards and Upwards!

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Friday 31st May… Wet wet wet!

No, not the weather, but me yesterday as I got back in the water for some diving. My medical certificate came through this week, so it was the first opportunity to get back into the water since my relapse. I did do a bit last year, but tis was a chance to do some drills and get used to a couple of new bits of kit. Im also doing a boat dive next week as part of the 75th D-day celebrations.

So it was off to Vobster Quay at a reasonably civilised hour with a dive buddy for a couple of 30 minute dives.

Vobster Quay

It doesn’t seem much time under water, but part of the fun is being out with like-minded individuals with a common purpose.

Me in my wet suit!

We did some drills which highlighted a (fixable) problem with a new mask, so it was good to find that out in the more benign environment of a sheltered water site!

I was quite tired when I got back – a combination of physical exertion, and fresh air, but a sense of satisfaction! The only downside is getting all the kit dry when I got home, but it was fairly sunny in the evening, and it got reasonably dry – Ill be hanging it on the line this morning to finish the process.

And for those that are interested, this is one of the dive profiles!

So while yesterday, diving might have been onward and downward, overall definitely onwards and upwards!

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Friday 24th May… All quiet!

Not a lot to report on the health front – still popping my four tablets a day without an apparent side effects. On a health related note though, I have been told that I can continue diving and Im waiting for my medical certificate as I write this.

In other news, I spent a fun four days in France last week. Mark (fellow blogmaster who has featured here before) and I went to his house there where we did a bit of work in converting an attic

Before

And after

area into a bedroom (a lot more to do – that was part of one wall!), as well as mowing grass and some swimming pool maintenance.

The pool

All good fun and a change from my normal daily routine! All part of ‘getting my life back’ to normal.

Onwards and Upwards!

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Monday 13th May… Check up and blood results!

So a quick trip into Southampton today, where I saw Professor Davies – the last of the three haematology consultants and someone I hadn’t seen before. They all seem very keen to see me – or maybe they draw lots and he got the short straw. Interestingly he trained with Dr Welch, the last consultant who saw me at Guy’s.

Anyway, blood results were all good – creatinine was lower, although not as low as I had hoped, but definitely a downward trend. There are no reasons why the Ibrutinib should stop me diving, so I obtained a set of bloods for the diving medical referee, so I can apply for my medical certificate… another positive step.

And my next consultation is in two months, although a blood sample is required in a months time. And finally, it was decided that they would like a CT scan, scheduled for some time in the next 6 weeks! We did have a discussion about CT and CT/PET scans – CT onlty are less expensive, and Guys are at the forefront of PET scanning (Professor Davies knows Professor Sally Barrington – a pioneer/ambassador for PET scans at Guy’s)

So I came home very happy and definitely feeling that things are going Onwards and Upwards! 🙂

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Sunday 12th May… Let the sun shine on!

It’s a lovely sunny day outside, after a mixed week, both of weather and activities!

You may recall from the last post that although two months of Ibrutinib had been prescribed, only one had been dispensed. I sent an email to the Clinical Nurse Specialists who rang back to say that at the time the script was written, the pharmacy didn’t have sufficient stock to dispense two months, but the second month had been issued and was ready for collection.

So, armed with that knowledge, I popped into the hospital on Thursday to pick up the next months supply and have my blood sample taken ready for my appointment tomorrow. I have been making a an effort to increase my water intake, so I hope my creatinine levels will be lower and closer to my baseline level. I also want to ask whether I can carry on diving while taking Ibrutinib.

Friday was a sad day – going to the funeral of my cousin Margaret (first cousin once removed). I travelled up to my sister and then we travelled together to Birmingham. She was a remarkable lady and it was good to meet some of her relatives and celebrate her life.

But life goes on – and as always, Upwards and Onwards!

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Monday 6th May… Bank holiday Monday

Its been a few weeks since I last posted, and I’m glad to say that all is still going well, with my next check up next week. However the bank holiday means that there will be a five week gap between appointments and prescriptions and I run out of medication next weekend. This was anticipated by Dr Lown at the last check up and my last prescription was written for two months supply, but only one month was dispensed, so I will be asking for an early prescription so I can collect it (and do a blood test) before the next clinic.

I was reading back through the recent posts today, and I noticed that back in January I said that there were two possible diagnoses – one was that the mantle cell lymphoma had developed into a Blastic form (BMCL) or it was a new lymphoma, Diffused Large B Cell Lymphoma (DLBCL). I didnt explicitly say that the diagnosis waa refined down to the Blastic form of mantle cell lymphoma which is why I was a candidate for the Ibrutinib.

Meanwhile, I had a great Bank Holiday Weekend, with a 60th Birthday party of a friend from my university days! Great party with some other uni friends there, so a lovely catch up. I was thinking on the way back that I am vey blessed to have such supportive friends who are still in touch with me (and that I am still around to see them!!). I have another reunion with the friends I shared a flat and house with in those days, so that will be a good weekend later this year.

I must also thank other friends (some of whom live locally) who have been very supportive and of course my lovely children. 🙂

So … Onwards and Upwards! 😀

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Tuesday 9th April… Check Up time!

I had my monthly check up yesterday and I’m delighted to say that all seems to be going well! I went in fairly early in the morning for my blood test, well ahaed of my appointment in afternoon so they would be ready.

I saw Dr Lown in the afternoon who confirmed that my blood counts were all good, as was my blood chemistry, with the exception od creatinine levels which have crept up a bit – the answer is to drink mire water as I have backslid a bit on that.

We reviewed my supporting medication and decided that I no longer need the Lansoprozole or Allopurinol, which simplifies my drug taking regime. I had my new prescription for the all-important Ibrutinib (two months worth!) which I will pick up tomorrow.

We discussed the need for a PET or CT scan and decided that it was unnecessary as it would add nothing to the clinical picture at the moment (all the lumps have shrunk, and no sinister abnormalities in my blood count or chemistry, so no further action, apart from a check up in a months’s time! He did remark that when Ibrutinib works, it works well, and he wants to present my case at a meeting with the drug manufacturer in the next few weeks.

So very much Onwards and Upwards!

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Friday 29th March… All going well!

I’ve had a couple of emails remarking on the fact that I haven’t updated the blog recently and was I OK? Actually all is going very well and there hasn’t really been much to say! I am taking my four tablets of Ibrutinib every day (along with one or two supporting medicines) and just getting on with life! I’m not aware of any side effects (I have read the patient leaflet very carefully!) and all seems well. My weight is increasing slowly and all is good. I think the fact that I am now only seen monthly is an indication that there are no immediate concerns about the drug.

I did have a sore mouth when I had my last check-up. Normally I take fluconazole to sort out that, but it is one of the drugs that interacts with Ibrutinib, so I was prescribed Nystatin in its place, which quickly solved the problem. This has helped eating, and has made swallowing the tablets and capsules much easier! I have also come off the steroids, and while there were a useful short term fix, high doses over prolonged periods do have side effects. The one that was starting to affect me was thinning of the skin, causing painful cracks on my finger tips, but they are starting to heal after three steroid free weeks.

It was my birthday last week and I celebrated at a Nepalese Curry house in Winchester – lovely food and a reminder of how much better my health is than it was 3 months ago!

So a check up in two weeks, and then possibly a PET scan sometime after that just to get an internal view of how things are going.

Meanwhile, Onwards and Upwards! Its a lovely sunny day as I write this, so time to go out and enjoy it! 🙂

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Tuesday 12 March… More (good) results!

I had my three week check up yesterday! I went into the hospital in the morning for the blood test so the results would be available for the clinic appointment in the afternoon where I saw Professor Johnson – head of the haematology department. I first met Professor Johnson in 2004 when I asked for a referral to him from Guys for a second opinion – and again in 2007 when I was an emergency admission to Southampton after a round of aggressive chemo caused some problems, so it was a pleasure to meet up with him again. (Details of that saga start here)

The results are all good, with the possible exception of creatinine which has crept up slightly – the solution is drink more water!

So my next appointment and blood test is in a month’s time. I am down to three days of Ibrutinib, so I need to pick up new supplies from the hospital pharmacy this week, so I hope I dont have the delays I had last time!

So very much Onwards and Upwards!

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Wednesday 6th March… Results

I received the results of my blood test late Tuesday afternoon (after my post) and all is good!

The blood counts are fine, with the lymphocyte count falling, and the chemistry is good with the remaining liver marker back in spec! My creatinine levels were slightly up on last week (note to self – drink even more water) but much less than two weeks ago and only slightly above my normal baseline level.

So all good. 🙂

Onwards and Upwards!

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