This is so tough

No, we did not expect this...  We thought the 8 challenging weeks had finally run their course, and this week I'd back on the "normal" chemo course...

Far from it.

I had no idea of the fatigue the radiotherapy would trigger - I guess we should have realised it would cause inflammation and therefore reduce the effectiveness of my liver: this is why it's not possible to judge the radiotherapy's effectiveness for weeks, waiting for the liver to recover.

And on top of this, chemo tummy's back, along with those "" healing" pains in my abdomen again :-(.  Hopefully, particularly as the radioactivity subsidies, my energy levels will rise, and I'll cope better.  For now, we're hanging in there.

Craniosacral Therapy

Like Bowen and Reiki, I have no idea how it works, but for me it does.

Classically, I am told, CST focuses on "massaging" the head, but - as the name suggests, it can be applied anywhere between the head ("cranio") and pelvis ("sacrum"); and in my case that means the tummy area.

And to great effect!  More "hands on" than Bowen or Reiki, the therapist gently massages the troubled areas, with a delicate circular pressure and a lot of mental focus. Just enough for me to feel the pressure, - but enough to be relaxed and soothed by; it is remarkably calming.  And provides a continuing sense of well being (and pain-free-ness!) long after the therapy session is over.

Given my radioactive state, I have to wait a week before my next session!  :-(

Stage 2: went really well

At least from my perspective!  The interventional radiologist was also very pleased, although we will not see evidence of the Yttrium pellets' effectiveness for 10 week or so - it's very hard to separate any influence on the tumors from the peripheral effects of the radiation on the liver as a whole (inflammation etc.). Only when this has abated can they tell.

And of course in the meantime I'll have had more cycles of Folfox, as well as begun the Avastin!  So that scan (early Jan?) will be a big moment, having the effect of all three treatments...

But at the moment I am feeling AOK.  Maybe it's a combination of an excellent Craniosacral session on Monday and the steroids from chemo, but the outcome is that, in spite of everything these past two days, I feel fine and quite pain free!!!

So, we're now back on the merry-go-round of fortnightly Folfox...  Wonder when the cold fingers will kick in, if/when my sense of taste will change, and how my appetite will hold up? But for now I am enjoying the moment!

A busy week ahead

Well it seems Stage 1 was successful - we've not heard otherwise!  So Stage 2 is still on for Thursday/Friday... Excited and scared in equal measure!  7 days of (more or less) quarantine might be tough...

But before then we recommence chemo (Folfox) tomorrow, Tuesday.  I hope I'll cope with this continuing abdominal pain, which is generally better for sitting down.  And, thank goodness, we've confirmed with my surgeon the pain is indeed just the normal internal healing process.

However, last Friday we managed to get to our physical therapist, who worked a minor miracle on my tummy and abdomen, using craniosacral therapy.  In the same class as Bowen and Reiki, for me and for whatever reason, CST had a really calming and easing effect, reducing (relaxing?) the tummy pains for a good 12 hours...  so effective was it, I'm going back this afternoon in the hope it can set me up for the rest of the week!

Chemo, Radio, MAB...  the fightback restarts here!!!

Stage 1: surprisingly straightforward!

Home again, feeling AOK from yesterday's procedure (still got tummy pain though from the earlier op).

We'll not know if it was successful for a day or two (when they've analysed the Technetium "dummy run"), but the surgeon seemed very positive, so fingers crossed!

One thing though - I was a little awry on the objectives of stage 1 - not to put in tubing, but just to block off unwanted pathways, so that the pellets only go where they're wanted.

Come next Thursday, they will run a catheter upstream along my femoral artery, turn right into the liver's tributary (now facing downstream), and navigate to the ends of the artery, hunting out the appropriate capillaries into which the pellets are injected.

But for the time being, we're focused on getting me fitter, particularly since chemo starts on Tuesday!

SIRT - the detail

If you are interested in the technical details...

SIRT (Selective Internal Radio Therapy) is not just a hose, saline and a bunch of pellets inserted and "fired" into my liver for 5 minutes! 

It's also not widely available.

It's one of the most sophisticated procedures available from the NHS - only 10 hospitals are qualified to do it, and they do 1 per week each!!  I feel so fortunate to be accepted onto the programme - for that's what it is, still a trial funded by the NHS.

First of all, it involves 2 overnight hospital visits - today for the plumbing, and a week on Thursday for the pellet injection.

Today, I am going to have to lie still fojr 5 hours as they insert tubes and bungs to ensure the injection through my femoral artery goes to all the right places in the liver, and avoids the areas it is not needed via "coils" (bungs) that block off other unwanted routes - whether those pathways to still healthy parts of my liver, or to other organs.

This stage concludes with a  "dummy run" with a very weak radioactive source (technetium, 6 hour half life, gamma ray) that's tracked through my body from the injection site to check all is well.

Then just over a week's time they will administer the pellets.

These are microscopic, smaller than the width of a human hair, with millions in the small vial of serum.  They are yttrium 90, manufactured only in Australia, and decay to yttrium 89 via beta particle (electron) decay, with a 2 day half life.  The electrons have very short range (1 to 2 cm), hence the need to get them to the right places.

But as they are absorbed, they emit X rays that leave the body, which is why we do not want to expose me to too many people for 7 days from the injection - however the levels are very low, and Diana is perfectly safe given we take simple precautions.

The efficacy is still "unknown" (it's a trial!) But strongly believed to be "good" in the majority of cases.  It also must be delivered in conjunction with chemo, hence I recommence that treatment next week, in between the two stages of SIRT.

Overall we are very excited - not only no primary any more, but also THREE treatments on the secondary - SIRT, chemo and the MAB (Avastin)... one of them has got to work!

SIRT - here we go!

This comes to you from a radioactively shielded side room, designed to keep the (low levels!) of radioactivity in (not out!).  Yes, here we go...

...well, not quite - our excellent meeting with the professor last Friday had two results; a better understanding of the two-stage procedure, and that we're doing it now!

Stage 1 (today) puts in place all the "plumbing" catheters needed to guide the radioactive pellets to the cancer cells, from my groin (femoral artery) to numerous exits in my liver, while also blocking off the side capillaries going to other places.

Then a week on Thursday I come back for stage 2, the injection of millions of microscopic radioactive beads, which will "attack" just those cells in the immediate vicinity of the catheters.

If you're thinking "wow!" you'd be right - this seems to be "one of the most sophisticated procedures available on the NHS", requiring 6 different professions during the op, taking 6 hours to perform stage 1, and only 10 hospitals being registered to perform it.

So here goes!

Getting better all the time... (*)

A good(ish) few days... Strength building and plans forming, with only one real challenge of internal pain, as my insides "de-inflame"; maybe including movement of the newly located bowel!!  As I've said many times a man with a funny tummy is not funny!!

But we've perambulated around the village without too much effort, and I'm doing copious circuits and bumps around the house to get strength back in the legs - I'm still heavier than before the op with (I think!) better "tone" and general mobility much improved.

And I've just woken this morning without the same level of internal pain!  Granted I've not moved much yet, but it does feel a lot better - progress!!

And other progress too - meeting the Radiologist tomorrow to discuss SIRT, the use of internal radioactive pellets in the liver!!  Very excited, particularly since they've arranged MRI and CT scans on the same day; feels like good progress.

And seeing my Oncologist Monday to discuss next chemo steps...  It really is all go!

(*) with apologies to the Beetles!

I'm home! (A few days ago!)

I''m so sorry not to have posted earlier, but I was fit enough to come home last Tuesday, only 6 days (to the hour!) after the operation - such was the power of the "enhanced recovery programme".

Granted I was still feek and weeble, (the journey home was tiring) so there wasn't much energy or appetite for blogging Wed or Thur.

Anyway, delighted to say recovery continues a pace, with side effects abating, pain reduced to the healing process around the keyhole, and insides working quite well.  We have an interview with my oncologist in 8 days time, so I anticipate this sojourn to end in a couple of weeks when we get back on the chemo, then the Avastin.  No news yet of the SIRT treatment.

So, overall Plan A has worked out exactly as we hoped, giving us a great chance to focus on just the one thing!  All I have to do now is recover body weight and muscle, before the next onslaught - thank heavens !y taste has returned!!