Archive for the 'Getting My Life Back!' Category

Tuesday 8 July… Clinic!

It has been quite a rollercoaster of a week, from last Mondays decision to start more conventional chemotherapy, to the change on Tuesday to continue with the rituximab, followed by the admission and administration. I had a bit of an anxious weekend – not exactly feeling unwell, but not exactly feeling on top form – I suspect partly by the electrolyte imbalance. I had occasional heart pain, which is probably due to potassium deficiency. I did go home with potassium supplements which seems to have solved that issue!

Im also slightly down on magnesium and calcium, but it is though that they will resolve naturally.

So it was with some anxiety that I attended clinic yesterday, hoping that the reduction in white cell count would have continued. It was with a sinking heart that I heard that they had gone up, quickly followed by an explanation that it was possibly because that the drugs were flushing the white cells out of the lymph nodes into the blood stream, where hopefully they die off. The good news is that my other blood counts and parameters are returning to normal ranges. This explanation accounts for the spike in white cells when I stated the ibrutinib.

So the plan is to have more rituximab this week, but this time as an outpatient (as I didn’t have an adverse reaction) and another CT scan to see what is happening with the lymph nodes.

Time for a quick thank you to middle daughter Katie who took me to, and collected me from hospital last week, and all my other very special friends who have supported me through one or two dark moments, and accompanied me to the clinic yesterday. It means a lot and I am very grateful.

So with the current plan in place (and others in the background, I am continuing Onwards and Upwards!

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Monday 17 June… A few days away in France!

I have returned from a few days away in France, helping Mark doing some work on his house. You may remember that I was there a few weeks ago, this was a trip to complete one job and carry out a couple more. The first one was putting up more insulated plasterboard on the sloping roof (this room will eventually be the main bedroom.)

That was followed by some work to run central heating pipes from the cellar to the new room…  Drilling te holes through the tiles, concrete and wood into the cellar was reasonably straightforward and quick.  “Ah” we thought, “this is going well!” Alas it was not to be as the next photo shows

Where drilling through the ceiling was not straightforward, not helped by the failure of two power tools! And that was just the start as we drilled into a waste pipe in the up stairs bathroom  –  which  slowed  us  down  a  bit! However we did get the pipes run in – they just need to be boxed in.

We did a bit of slab laying on the last day, and some work in the garden with the ride on lawnmower and the grass cutter on the tractor.

Healthwise, all seems to be going well, I have an eye appointment at Southampton (my eyes have been better recently – which could be the Ibrutinib as it can be used to control GVHD, or I might be being a bit more careful in applying the various eyedrops etc. Next week I have my CT scan, and I should get the results at my next check up in July. I haven’t heard anything about my recent blood test, so I am taking that as good news!

Onwards and upwards!

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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


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! 😀


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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Tuesday 5th March… Feeling good!

And 19 days since I started the Ibrutinib! The visible enlarged lymph node is no longer visible, and I’m not sure that I can still feel it under the skin, although surface anatomy is not my strong point :)! But good news anyway!

I had a blood test yesterday, but I have not had the results yet – however I’m sure that if there was anything worrying, I would have been told by now, so I’m just being curious! I am hoping that the last remaining abnormal liver marker will be back in the normal range, ad that the creatinine levels are similar (or better!) than it was last week.

My weight is still a bit low, despite my attempts to eat more – however as today is Shrove Tuesday, i shall be mostly eating pancakes this evening!

On a technical note, the gallery button doesn’t work – this used to link to photographs that I hadn’t posted on the blog. Unfortunately at some point when I was rebuilding the server, the database became corrupted and I’m looking to re-import it from the backups. This is not a trivial task because of the way te databases are stored (one big file) and I don’t want to risk compromising the blog database. However it remains a work in progress.

Finally, thank you to everyone who has added comments to the posts – they are very much appreciated!

Onwards and Upwards!

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