Lockdown in Sydney

Well we are now about two months into the BIG Sydney lockdown and it might go till Christmas!!

It’s just as well that I have finished the hospital infusions as it is a bit creepy to have to go out now as there is so much COVID around Sydney.

Fortunately I have been able to get my blood tests done locally – you just pick a quite time and wear your mask. These go direct to the Doc and we meet up on Telehealth which works pretty well when things are going well! (which they are!)

The neutrophils were a bit too down a few weeks back but today’s results show “a pretty normal blood test”, to quote my Haemo! So it is steady as she goes and I start quaffing my second set of repeat prescriptions for Venetoclax which will carry me through until Feb 2022 before this little ship heads out onto the Sea of Remission for hopefully a long journey!

I haven’t written a post for a while because not much has been happening (I only have about three new pics in my Google photos and two of them are of my own navel!). I just wanted to let you know that I am going well, occasionally a little tired, but truly in good shape!!

I never take anything for granted but I know when I’m lucky and remember that I’m not counting the chickens for a good few years yet!! One possible cloud on the horizon is some recent research shows that immuno-compromised people on magic drugs like I am taking don’t seem to produce antibodies in response to the vaccinations very well. So if any of you are or know anyone who is “vaccine hesitant” tell them to get it for me!! The vaccines will give me protection mainly by removing the stuff from the general community!! I’m still being very careful!

The Last Infusion!!!

Well, there you have it!! The final infusion was today and again all went very well.

Counting every visit this was the 9th installment of the Obinutuzumab infusion at Lifehouse. Again everything went well (much better than your final one in 2016, Deborah Sims!!). I’m one lucky duck!!

This is, of course, a very significant milestone in this journey with no more infusions and just the Venetoclax tablets to continue every day until almost Christmas!! Plus a good few blood tests!

We have had a few wobbles lately involving a potentially neutropenic scare with a flare up of the nail fungus and an inflamed ear but thankfully the flucloxacillin did its magic and all was averted. In fact, the neutrophils were well back within the desired range today so hopefully it will be clear sailing in the good ship Venetoclax for the next six months before we attempt to cross the Sea of Remission, under sail power, for the next few years!!

Deo gratias!! Ventus secundus!!

We’ve been away!!

Well, we’ve had quite a fortnight!! The bloods had improved a bit when we saw the Doc on May 10 and he let us go to Victoria!! We had to still “do” our our compensatory two evenings at a city hotel in Sydney (t’was for our 41st Anniversary after the 40th was kiboshed by COVID).

So after two lovely nights in Sydney we swung by home, packed a few extras and headed for Albury to stay with Marion & Suzanne for a couple of nights. Then, off to Jane and Cam on the beautiful Mornington Peninsula for the weekend before spending four nights in Melbourne to catch up with old, dear friend Maria who is struggling with a worse hand of cards than CLL. It was great to be there and to get some perspective on how Maria is. With the pandemic we hadn’t seen some of these people for over two years!!

We got home with the virus nipping at our heels! Luckily we hadn’t been anywhere near the outbreaks that have led to the lockdown. We had to be back for the second last infusion on Monday (this was a breeze again d.g.!) and we really enjoyed actually being “away” for the first time in ages …. So much to be thankful for!!!

Up yours nail fungus – Bit of a Neutropenia alert!

So, it’s not a perfect run!!

(this post didn’t publish correctly last week!)

I have had a bit of onychomycosis (bloody nail fungus) for a couple of weeks which I had seen the GP about and was treating but when I saw my haematologist today my neutrophils were low (1.0) which caused him some concern as it is a real sign that my immune system could be too suppressed and he is concerned that a simple infection like this could lead to much worse!!

So, the upcoming road trip is off and I will have another blood test in two weeks combined with a strong antibiotic starting today. The Doc is concerned that we might need to stop the Venetoclax tablets for a while if the neutrophils done improve!

Not a disaster, just a nuisance and a bit of a concern (I have to watch my temp carefully). Things like this have to be expected but I have had such a good run ….

We took some extra blood today to check how the specific cancer cell count is going (MRD – minimum residual disease count – watch this space with a positive outlook!!!

I went to something recently and no one asked: “How are you Mick?”

I am well aware that I haven’t written anything here for a while but the truth is that I’m pretty boring …..! I am still, fortunately, having essentially no adverse reactions at all, I look well and, apart from some tiredness, I’m really OK!

I have my next infusion of obinutuzumab in a week or so and the venetoclax are being swallowed, religiously, every day.

I am always acutely aware that other people with my condition are having a much tougher road and I am always thankful for this “novel” regime and being eligible for it!

We actually went away for a couple of days to Wagga and even managed to spend one of our Government issued, COVID recovery vouchers during a roadside stop!!The cheapest coffee ever!!

At the top of the Ramp

Finished with the pretty packaging just a plain old bottle of “horse pills” from now on!.

I have finally arrive at the top of the Venetoclax ramp and have started the 400mg/day regime which will run until December. Again no real reactions so I am indeed fortunate.

I have been very lucky to get this “novel” medication and to have had virtually no adverse reactions (so far!)

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