November in the Tao; Radio Ablation and 22 cycles of Radiotherapy, oh yeah we're happy, not!

Hi,
Yes another revamp, the last one for a while I promise.
I will speak to Tash and see if we can manage another update before the end of this week, but as she is getting progressively more fatigued as the treatment goes on, I will not promise anything.
Mark

November update II

image placement 20 Well I'm pleased to report that the last few days have seen a great improvement in my general health and wellbeing. I was starting to get a little worried.... I hadn't had a drink for 10 days!!!

The general discomfort after the "liver quiver" as Mark so aptly puts it, was a considerable amount higher this time, and lasted for several days longer than the two previous occasions. On top of this, my radiotherapy started straight away, and I was on earlies for the week. So my days consisted of catching the bus to work for 6.30am, doing my shift, catching the tube to Harley Street, having my radio session and catching the tube home, which got me in for around 5.00pm

You can see that this is quite a long day for me, as I would usually be home by about 2.30pm when on earlies and enjoying an afternoon nap and spot of knitting on the sofa!!!

Anyway, last weekend was packed with arrangements so it was fortunate that by Friday, I was feeling well enough to order a glass of wine with my lunch, that beginning with Roberto, Nicoletta and Enrico, some Italian friends from Verona, who were in London for the weekend. This was quickly followed by more glasses of wine over dinner with Pete and Lucy who had just arrived in from Spain.

Work started at 7.30am on Saturday morning and I gave my new UBS laptop wireless connection a full workout, doing all my support tasks from various rooms in the flat, starting off in the study while Mark was still asleep, then moving into bed to watch Saturday morning TV with him, then onto the sofa, and finally to the breakfast bar for a bit of late morning rebooting of server action.

Saturday evening I had a 30th to attend which was on one of those river cruises on the Thames. Steven, who's birthday it was is the youngest of the Croft clan from the Cotswolds. Mark and I were on the receiving end of hearing the bad music that comes from these boats when we've lived by the river so it was nice to be on the other side for a change....! I wondered if he was standing out by the water's edge in Wapping waiving his fists and swearing each time we went past.

Sunday was slightly more relaxed, but still busy as we had Pete and Lucy round for dinner. Thankfully I'm on lates this week, which means I travel into Harley St first for radio, then go to work for the late shift until 7.00pm. The liver pain has just about cleared up and tomorrow will be two weeks since the ablation so fingers crossed, no dodgy complications like last time.

We'll keep you informed of further progress soon.

Editor's note: Typically Tash has managed to talk a lot without saying much, here is a catch up;

Completed Medical Procedures:

The ablation was successful and Dr Gillams was happy to discharge Tash from hospital 10 days ago, this, you remember is the procedure to keep her friends in the liver under control, she has had this twice before, October 2005 and was the precursor to our eventful trip in Italy in July. This time around Dr Gillams seems to have received an early Christmas present in the form of an additional Ablation needle. This new tool has 'twice the ablation power' as I imagine it says on the side of the box, the downside, if there has to be one, was that Tash was extra sore this time.

Ongoing Medical Procedures:

The spinal tumour is in the T4 Vertebra, just about where your shoulder blade is. The radiotherapy is the best treatment to use in this case, not just because it is non-invasive; well you wouldn't want to go rooting around in there now, would you!

She is one week down on a 4 1/2 week cycle, 6 done, 16 treatments left. Treatment is 15 minutes each working day, fitted around work. Isn't really that easy though, as it is a 30 minute tube ride to Harley street, which is next to Oxford street, the busiest part of London, so she was getting pretty tired when she got home last week

Previously......

I am not going to pretend to you that last month's news didn't "knock us for six" (as my mother would say), "bowl us a googlie" (as you Cricket fan's might venture), "kicked us in the nuts" (as I often comment). There has been too much going on for us to really take in in the last 4 weeks or so.

You have probably worked out that the scan results since Tash completed Chemo last year have been less than brilliant, in fact actually getting worse. I started to suggest to Tash that there might be a reason for this, my internet reading on Herceptin told me that it has a (variable) but finite life span of around two years until the patient/cancer begins to build a resistance to the hormones used in the drug.

As some of you have heard my say, we usually approach a bad scan result with a "Worst Case Scenario"; a flash spread of metastases around her skeleton. This is the next expected progression and now maybe in retrospect this worst case scenario was a bit out of date and could have done with a revision.

Tash and I have been struggling a bit to come to terms with the new spinal tumour, it represents a step in the wrong direction certainly, but more difficultly, it was a step that we weren't expecting. I feel slightly stupid now about sitting in 'the Slev's' consultation room and cracking a joke comment of "oh that's ok then" when we first heard of it's existence, relieved that it wasn't the worst case. I talked to Tash about my thoughts on Herceptin after this and she has since spoken to 'The Slev' and confirmed that we are seeing the signs of Tash building a resistance to Herceptin.

You'll appreciate that this is a 50/50 comment; the next year may well turn out to be the most testing that we have experienced yet, but we feel in control of the situation again.

Anyway after that catch up, down to business.

Tash has maintained her unbroken run in avoiding being tattooed (with alignment markers) for the new session of radiotherapy, she is instead promoting the latest in fashionable sticky crosses and clear industrial plasters over her back and sides. Yesterday was spent, once more, sitting in a hospital room as Tash was busy being ablated away in a theatre several floors below me. This is her third 'liver qwiver' op and being so close to Christmas, it seems that Dr Gillam's (you note that she has received a name promotion as she is has become a 'bit of a friend') has received an early present and her 'lazer ablazer' now works with two needles as opposed to one. The majority of these liver friends have been on the sites of Tash's previous scars, so the hope is, that in burning out a bigger margin that this will delay or negate the need to do this again.

Which is just as well, Tash is becoming a treatment 'super user', this being her 18th procedure and we know some stuff; Morphine makes her feel really sick, no one ever seems to read her file, neither do they understand that she has a portacath and so does not need to endure another painful and abortive attempt to stick needles, and in today's case A MONSTOROUS NEEDLE, into her "too small to be of any use" veins. When will they learn....?

I can report that Tash looked very attractive in her theatre gown before she left, particularly as she was made to wear full length surgical stockings rather than the usual "pop socks", hmmm nice. As I am typing this I can hardly contain my enthusiasm for the sorts of conversations I will have to repeat, stop half way through, or just abandon, tonight as Tash sleep talks her way through the evening. I will try my hardest not to simply reply to her questions with the most outrageous lies I can make up because, knowing my luck she will remember and enquire if I do really wear a nurses outfit when she is out at work at the most embarrassing moment.

I left her about 10pm last night and got a text at 9am this morning enquiring if I had had a restful sleep and to inform me that the 'nurse dufus' ratio had risen to 2 overnight due to the night shift fantastically mucking up her anti-nausea drugs and early breakfast, all this was required prior to Tash starting her 'intra-day' fast in preparation for the "make sure we have left nothing behind" post-op scan.

We found things to amuse our selves in between times, investigated why they had left a CB radio in her room "Breaker breaker this is the Big Tao come on any other sick people out there on the second floor ", but found it to be an oxgen monitor, yesterday we wasted almost 10 minutes discussing her breakfast choices, that would eventually not arrive, some thing close to torture for someone who is fasting she observed. After the operation Tash enviably felt nauseous so we had a supply of sick bowls waiting, that actually make fine hats before they are used.

Fortunately there was no suggestion of any surgical instruments or other medical flotsam and jetson hanging around inside her and so we left the hospital and prepared for another 'Bumpy ride home of discomfort' - You'll appreciate that having someone poke around burning holes in your liver does make you a tad sensitive to the usual old suspension and pot holes, taxi and road combination that we have gone with on the last two ablation occasions. I applied the recently discussed 'new taxi only' rule and after hailing one of London's finest, informed him of Tash's need for vehicular tranquility, we then were treated to the most serene ride back to the flat.

We were greeted by a package from Tash's London posse, which is particularly welcome as we both have been feeling a bit isolated due to our recent news, as you can see it was a struggle to get her to unwrap it before devouring the chocolate contents.

All things going well the plan is for Tash to start her Radiotherapy regime on Monday, there will be another update at the end of next week to give you an idea on how her first week has gone.

See you again soon......

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