Author: GarrathE

Not good news but no explicit bad news; just “it’s complicated”!

I had the MRI brain scan last Sunday (26th June) and the consultation with Dr. Hatfield today (28th June) because I emailed Kate Casey to tell her I didn’t have a scan follow up consultation appointment and she booked me into the very next clinic.

Because of the short period between the scan and the consultation the scan “has not been reported on “. Which seems to mean that the Consultant Radiologist has not scrutinised it thoroughly, nevertheless Dr. Hatfield said that nothing new had jumped out at him looking through it. The implied news being no new tumours!

Now for the “it’s complicated” bit. While there were/are no new tumours to treat they have now treated the two old areas twice. That is the original tumour excision site in the Cerebellum and the 10mm tumour in the Optic Chiasma that they found and treated in March when I mentioned the flashing stars that I first experienced in Costa Coffee in The County Hotel in Durham in Feb 2015.

The next scan was clear, and a good job too as I was in Chemotherapy March through August. The sites had shrunk more but the VMS or seizure as Dr. Hatfield has characterised it means I have been put on Keppra (Leviteracetam) for the duration.

The next scan in November at a nominal nine months wasn’t clear. And almost a year on two new tumours had appeared next to each of the previous tumour sites. As the Gamma Knife had been ‘refuelled’ and upgraded they could treat the two sites, when previously we had been told that the Gamma Knife was a one-shot treatment device. So within two weeks I was back in/under the Gamma Knife.

This three month checkup time around, this time being June, the results were not a qualified all clear. Actually this is where the quote “it’s a bit more complicated” came into play. The follow up consultation was just four days after the scan due to Kate the manager’s intervention when I raised the concern that while I’d had the scan appointment a month ahead in good time but I didn’t have a consultation letter. Dr. Hatfield opened by saying that the scan “had not been reported” but looking at it he did not seen any obvious sign of new tumours. But there is a “thickening” to one side of the original surgery site and changes in the optic site. This time Dr. Hatfield was adamant that this time re-treatment was absolutely not an option. So no obvious new tumours but changes around the original sites that are impossible to determine are due to new disease activity or due to scarring cum healing going on. Only time will tell, so its the start of another three month period of marking time and waiting.

In response to my feedback of the trend of headaches following the last treatment that receded and then increased again through late May into June Dr. Hatfield has put me onto a week of low dose steroids, Dexamethasone, and then ‘weaning off’ it over three weeks. Unfortunately over the next couple of days the low dose of steroid did not resolve the headaches.

Lynne and I have just named a moment! Earlier in the year we visited Philip and we always start our visits by diving into at least one G&T. This time we arrived with a bottle of Bombay Sapphire, which was just as well as the first round finished his Tesco gin. So we cracked open the blue bottle. The first sip provoked a loud exclamation in chorus from all three of us. Now Bombay Sapphire is the only gin we will choose. Tonight at the hotel bar Lynne asked for a G&T and got Gordons by default. The second she asked for Bombay Sapphire, and again there was the exclamation! So this is now the ‘Tesco Moment’

Yesterday was a pleasantly easy journey day even though we were flying with Jet2, as we couldn’t get the ferry we wanted to Bilbao. In retrospect I’m glad as we cannot share the driving any more. Flying mid-week meant the majority of passengers were ‘mature’ with only one obvious Hen party, who all boarded sober. We had heard that Jet2 flights were now dry, but not in this case. The cabin crew leader told me that the “problem flights” are and there is a police presence on those flights too! It was calm and pleasant. Getting through the airport was easy too, as was getting to Victoria Rent-a-car. Lynne loves the Peugot 308 we hired, saying “I’ll go slow till I get used to it.” and doing 140kph on the 120kph motorway just 10km later. Opening up the house was good, we didn’t need to phone Monasor, even though its been a whole year. Did some shopping and had lunch at Mejias III, I had liver of course. Finished unpacking and had a lovely evening at the Chicken Shack, especially as we saw Perran our gardener.

Today was hard, taking laundry to Lavanderia Ana’s and then whiling away the time having a cuppa at the Chicken Shack, doing so more shopping at Mercadona, then going to Hiper Calp for stuff, before another cuppa at Megias III and collecting the laundary. We had a fabulous lunch at Las Barcas in the port. Lynne had Swordfish and I had Hake Basque style. Took everything home and put it away. After a short nap for Lynne we whiled away the evening at the Chicken Shack, incidentally being forced to listen to (loud) Essex bollocks. (The only drawback to the place.)

It seems odd now looking back to January and February and my thoughts and hopes for Remission 2.0 going forward. My attitude is that, despite the Chemo Oncologist’s stated reluctance to use the word ‘remission’ is that now I’m out of Chemo and the various follow ups have so far not detected any cancer in my head or my body, I am now in Remission 2.0 but no-one know how long that will last, there is just no way to tell. His plan is three monthly consultations with six mostly CT scans from throat to groin. And of course I have the nine month check up with the Gamma Knife Oncologist planned for November, I don’t have the date yet though.

And I have more stuff to worry about. Not just the visual disturbances but also the post-treatment CT scan showed a build up of about 9mm of fluid around the heart. The cause is unknown and it will need monitoring. If it builds up too much the heart will not be able to pump effectively and I could suffer from tachycardia and/or breathlessness. Deep joy!

Actually, this eventful week started last Friday (7th Aug) when I was walking upstairs to start work first thing in the morning. For the first time since the Serious episode just before the Gamma Knife Radiosurgery in February and the discovery of the second tumour in the optic nerve area I had a flashing lights episode serious enough to obtrusive. The big difference this time was I also experienced a mild headache in left frontal area of my head and that the episode lasted and lasted rather than stopping in just a few minutes as before.

After three hours the visual disturbances were still as bad, in fact worse with blurring of my vision making reading and working almost impossible. At this time Lynne and I hit the phone and started seeking advice and assistance.

My first port of call was Kate Casey at the Gamma Knife Centre, but I had to leave a voicemail on her answerphone service. Lynne tried Gill Newsome, the Chemotherapy Nurse working with Dr. Conn, but was transferred to Ward 1 as Gill was not in work. So I also rang Westcliffe Medical Practice to talk to Dr. Rehman. Very disappointed to learn that he has now left and gone Locus. Also Mary Cuthbert my responsible GP was not available either, so had to agree to a call back from Dr. Pickering instead.

While waiting I got a call from Dr. Bradley who works with Dr. Conn, as he was on holiday for the week. Although aware of my case notes he was leaning the migraine route. During my call from him Dr. Pickering called me back, so I put Dr. Bradley on hold and asked Dr. Pickering to call me back in a few minutes. Dr. Bradley then offered to speak to Dr. Pickering and keep him in the loop of events.

A while later I received a call back for Dr. Pickering, who updated me that he had spoken with Dr. Bradley and that Dr. Bradley had referred me to the Eye Casualty Dept. in Ward 18 at the BRI as he wanted to be sure there was nothing physical going on in my right eye retina that needed me to attend there at short notice.

A little later again I received a call from Dr. Adeeb from Eye Casualty and he did a detailed phone consultation. Towards the end he actually chuckled and told me I’d described a text book case of Migraine. So he did not ask me to go in but to monitor what was happening and to call immediately if things deteriorated. (In retrospect, this really was a risky course to take methinks.)

So it was with tremendous relief that I picked up a return call from Kate Casey. And she was truly wonderful, swinging into decisive action. She agreed it sounded like a migraine, but with my background the concern is what is the trigger, which is often intracranial swelling. She took a few minutes to make a couple of calls and then phoned me straight back. At which time she had an MRI slot booked and an agreement with Dr. Hatfield to squeeze me into his Tuesday morning clinic. I just had to get to St. James by 08:40.

In the meantime she wanted me to take 4mg of Dexamethasone and doses of Ibuprofen and paracetamol. That required arranging for Dr. Pickering to write me a prescription as I didn’t have any left as I’d first thought. I must have taken it in with other expired meds the last time I’d been to the pharmacy at Westcliffe. Lynne was a star and went and collected the steroids as soon as they were ready. The rest of Friday and the weekend were spent dosing with meds and simply waiting for the time to pass. The actual visual disturbances went on until around about Sunday lunchtime. So it was a relief when they finally calmed down and stabilised. Kate Casey was very attentive in checking up on me over the weekend to be sure all was okay.

Monday morning towards lunchtime I got a call from Dr. Conn’s medical secretary at the Yorkshire Clinic asking me to attend at 18:30. Lynne had the brilliant idea of taking the dogs to Sunnymede so that they are safe and cared for while we do that and for the long day ahead at St. James the following day.

The session with Dr. Conn held no surprises, he really needed to be sure there was a plan in place after the update he’d had from Dr. Bradley and to assess if it would impact the last Chemo cycle starting on Thursday. The conclusion was that we proceed as normal. But he fully expected Dr. Hatfield to put me on onto some sort of anti-seizure regime in response to what had happened.

We were early to the station on the Tuesday morning and got an earlier train than planned, which made getting a taxi up to the hospital from the station a relaxed process and we had time to sit and have a cuppa before heading into Radiology. The scan took about an hour and half overall, quite a lot of waiting but 35 mins in the machine itself. Then it was upstairs to the Gamma Knife Centre to wait for Dr. Hatfield to fit us in. Watching the staff, especially Kate Casey at work is an inspiring thing. They are so dedicated.

The scan itself was good news – at least that was a real plus thing. The surgery site and the optic tumour have continued to shrink and the wee shadow next to the optic tumour is unchanged. Dr. Hatfield confirmed his diagnosis of me having seizures, ‘mini-seizures’ as he calls them. I think that’s his label for non-motor function seizures. I have labelled them VMS’s (Visual Mini-Seizures). And sure enough, he has put me on an anti-seizure medication regime. A drug called Keppra, which has an unpronouncable pharma name. This is something I will have to take from now on for life. The trick is to find the right dose to hold the seizures at bay, and then after six months seizure free there’s a fighting chance I can have my driving licence back. Now that would be nice. In the meanwhile, Dr. Hatfield will see me again in November for a further three month follow up.

So Tuesday was a busy one, but with a nice break for lunch at 2 Oxford Place to make at least a small part of it for us. And Lynne pushed me and I finally gave in and got myself an Apple Watch. The mirroring of apps from my iPhone is a real bonus when it comes to reminders to take my meds, especially the new one, the Keppra. But it was a very traumatic day for sure. My hands were literally shaking with relief all afternoon.

Thursday of course was the first day of the final cycle of chemotherapy. So we had to pop up to the Yorkshire Clinic on Wednesday for Gill to take blood. She texted later to say all was okay to start the next morning. With the sense of relief from Tuesday and knowing this was the very last cycle, the session seemed to go very well indeed and we left the Yorkshire Clinic with me expecting this final cycle to be a bit of a breeze.

The follow up consult last Tuesday was not the resounding all clear I was hoping for. The phrase that stuck in my head is “I think you can be slightly optimistic.”

The treatment of the surgically treated tumour seems to have gone well and the cavity left by the excision has shrunk. As has the treatment of the second tumour, which has also shrunk visibly, and prompted him to say “I think that you can be reasonably optimistic.”

He also showed us a very small shadow (about 2mm) that has appeared since the Gamma Knife surgery. He then showed us the planning pictures with the targets surrounded by close yellow circles and slightly larger green circles. The yellow circles shows the ‘full dose’ area and the green circles the half dose area, as the dose drops of in a kind of inverse square from the target volume. The new shadow is within the yellow-green torus. He thought it “could be be an artefact of the treatment”. The only way to tell is for another scan and consult in three months.

That is about the time this adjuvant Chemotherapy finishes. So I think that a follow up three or six months after that will be much more important?

So now I am into Cycle #4. Half way through the complete treatment at the end of this thee week cycle.

But Dr. Conn advised we try a half dose of the Oxaliplatin drip this cycle. Not exactly chuffed but I’m not going to gain say the expert.

And apart with a hiccough with the drip flow rate being too slow and then upped for the last half hour or so, it seems have gone well. The Peripheral Neuropathy is very much reduced. The only time I react to cold is if my bare hands get too cool while dog walking or I hold on to frozen goods too long. But otherwise I seem to be completely tingle free.

Interesting to realise that the ‘drip arm’ tingle disappears in warm bathwater. The flip side of this is that my chilled hands increase the tingling sensation but that it reduces as soon as I get back inside in the warm.

The Bad news is that even with the reduced dosage in the second cycle my reaction to it, although significantly less grim, has been, to quote the Consultant, “extreme” and he is clearly concerned about permanent nerve damage, as in avoiding it at all costs.

The GOOD news is that he has decided to omit the drip medication in the next cycle starting on Thursday. Which means that the likelihood of being knocked sideways for the first few days of the cycle is removed. Therefore I plan not to take any sick leave on Thursday and Friday this week after all. Nor at the beginning of next week. Obviously this might change on the day, when I resume the tablets without the side effects of the drip to mask their effect(s).

The approach is to review in three weeks time, at which point the Consultant will decide whether or not to reinstate the drip in the following five cycles.

This is a cancer staging page for future reference. Cancer Research – Stages of Cancer

Just been watching Saturday Kitchen Live and James Martin has demonstrated neat looking GF crumb fish nuggets. Put parsley and almond flakes into a food processor and blitz to a crumb. To switch the crumb to the fish nuggets brush them with mustard and shallow fry. He used a variety of fish and shellfish but any bite size fish chunks will do. Blazingly simple!

Neuropathy is a Nuisance! It’s 6°C but this I how I have to muffle up to go out with the dogs to prevent it kicking off. Anything below room temperature sets it off. Iced drinks, cold tap water, freezer food, cold air, its a nightmare!

This evening we met Dr. Conn, the Clinical Oncologist, and we like him. He seems quietly confident and transmits that well. He knows Dr. Hatfield (the Gamma Knife man) and meets with him each Monday, so it would seem I am well covered between them.

He is proposing the Chemotherapy as a “protective measure”. It will be a course of eight cycles of three weeks each. Each cycle will begin with a two hour drip, followed by a two week course of tablets, and the cycle ends with one week off. The total is twenty four weeks or six months in round numbers.

He gave me a good half hour and did a thorough background check and physical exam. I got the opportunity to ask all my questions, even Tony’s about running the genome and got comprehensive answers. The genome bit he said he is “doing in the background”. There was a very fleeting OSM look on his face, so he clearly didn’t expect that question at all.

He wants to see me again next Monday and if the blood tests taken today are all okay he proposes to start the therapy on Thursday, 13th March. Just over a week’s time. He was very honest with us and did not gloss over the fact that there will be side effects and they will be unpleasant. Not a nice thought but we hope that the outcome will a worth the price.

The good news is that the health insurance company are going to cover this as part of the ‘first line treatment’ condition to the cover of cancer under CSC’s policy. The bad news is that it puts the kibosh on our usual Spring trip. Between side effects and a three week cycle travelling would seem to be very unwise. So that’s September sorted – Calpé here we come!

So yesterday I had my consultation with Mr. Steward, the Gastrointestinal Consultant surgeon who has managing my case from the start. He confirmed that the next step is my being referred to Dr. Andrew Conn, who is a Consultant Oncologist here in Bradford. And that the next step of my treatment of this phase of my cancer is ‘systemic chemotherapy’. He even picked up the phone and spoke directly to Dr. Conn during the consultation and this probably had something to do with me receiving a phone call within a couple of hours from Dr. Conn’s secretary at the Yorkshire Clinic to confirm my initial consultation with him on Monday evening coming.

It was also nice to get a follow up call from my Case Manager at the health cover company for initially an update and then to provide me with a new Authorisation code for the chemotherapy. So cover continues thank Heaven!

I have had a busy week. On Tuesday I saw Dr. Hatfield, Consultant Oncologist, and on Thursday I received Radiotherapy under the Gamma Knife. A single treatment that lasted for 85 Minutes.

During the consultation I mentioned the flashing lights that had appeared Dr. Hatfield, which prompted him to check the post surgical contrast MRI again in the area for vision and point out something that “should be a blood vessel but we’ll take a closer look with our MRI on Thursday”. And that was how we learned that the waiting time was only one day! It was also the reason for the treatment extending from 60 mins to 85 mins.

The worst part of the treatment is the four jabs to freeze the skin where they screw the frame to your skull! They are honest and tell you it’ll sting and boy does it not! After that it’s a breeze. But overall it makes for a long day. In at 07:00, frame fitting and contrast MRI takes till 10:00, then sit and wait while they plan the treatment from the scan, and finally at about 13:30 the hour and thirty five minutes in the machine. I got back to Lynne about 16:00 and discharged with meds about 16:30. The drive home through Leeds was slow and we got home about 17:45.

I will be called for a follow up MRI in three months with a consultation with Dr. Hatfield after that.

So today I received copies from Mr. Gnanamurthy Sivakumar, Consultant Neurosurgeon at the LGI (Mr. Bob as Andrew dubbed him) of letters that are essentially my ‘discharge papers’. The Discharge Summary to my GP and the Referral to Mr Steward to move my treatment forward as he sees fit now he is aware that the primary that he removed in November 2012 has ‘spawned’ a metastatic secondary in my brain.

I spoke to CIGNA yesterday and my Case Manager determined that I should see Dr. Jacob to put the chest anomaly to rest properly. So I have an appointment with him on Monday 9th Feb.

The new Mega-telly is going to be a big learning exercise. Not only all the bells and whistles but also the Smart TV facilities it offers, like easy access to BBC iPplayer, etc. Watching on demand is going to give way to the VHS approach of recording everything on th Sky+ box for laters catch-up viewing.

Okay, so this is the latest goss(ip)

I have today seen my Consultant Neurosurgeon (and he has given me a printed copy of the Histology results). He has confirmed that the tumour he removed was a Metastatic Secondary Tumour. The results also confirm that the primary that ´spawned´it was most likely a “intestinal tumour”, i.e. most likely the previous Colon Cancer from November 2012.

The next step is for my surgeon back then, Mr Mark Steward, to confirm the cancer type of the primary he removed to see if its the same as the secondary removed from my brain. If yes then monitoring would seem to be the order of the day. If no, then we need to find this ‘new primary’ and treat that.

In the meanwhile Mr. G. Sivakumar has effectively discharged me “back to the care of my GP”, with letters to follow. As of right now I have four weeks sick note to get over the last of the physical effects of the surgery. Then it will be time to review my situation, but likely it’ll be a return to light duties at work. No doubt how my employer will respond to all this will be revealed in due course but I have every confidence in the support of my immediate management.

So to sum up, I am guessing that all this means I currently have no detectable cancer and that puts me in “Remission 2.0”. I am working on the theory that the two years or so between the Colon Cancer and the Brain Tumour should count as Remission 1.0 (rather than my previously erroneous assumption that I had really been cured.) But there is still a chance that there will be more to come. Watch this space!

In the meanwhile I feel like I have several hours of emotional roller-coaster ahead of me as internalise this news and adjust my world view to fit the new cirumstances I find myself in.

When buying Apple iOS kit with fixed RAM installed do not buy the minimum memory, always go one step higher.

On previous devices we have always gone maximum memory and the 64GB in my iPhone4S and iPad1 at ???GB most of that investment was wasted lying empty for the whole time I used the device before upgrading or it dying.

So with the iPhone6 and iPad Air I went to minium RAM, and now I keep hitting storage almost full issues. The lesson came down to me with Francesca’s iPhone4, provoked by getting frustrated with her four year old Fred Flintstone Garmin SatNav and discovering that her iPhone4 is only 8GB and any idea of putting CoPilot on it has got scuppered!

Bless Lynne, she has offered to give Francesca her old iPhone4 now the iPhone6 has arrived to use as a dedicated SatNav.

I’ve just posted this on Linked In at 05:45 typed in a single flow of words and hardly any rework. Really rather eloquent of me I think!

The key word here is Business. Unless the prerequisite non-technical work is done properly FIRST(!) it is not possible to ‘develop’ a business website.

Websites are seen as magic bullets. They are not, they are information processors (data, finance, process, decision tables, etc). A website can only process information to deliver business value if there is a clear comprehensive model of the business that answers two questions. “What is all of our information?” and “How do we use it?”

That requires two things (that in my experience are not usually done, or done very poorly (as in limited in scope), which are an Information Architecture describing all of the information of the business and a Business Process Model that describes (and controls) how it is used.

Given those documents an Information Architect can design and build a business website that has a fighting chance of delivering the brief.

The issue I personally have with this blog posting is that it jumps straight into the techno-geek level. Don’t get me wrong, I love Drupal (I’ve built my site on for around 6 years now) despite some upgrade ‘challenges’. It offers five contributed modules without even hinting which kind of business each is best oriented towards. Also, lets face reality there are hundreds of contributed modules out there constantly coming, improving, declining and disappearing. So a list such as this has dangers in that direction too.

The reality is a business website has be regarded as a never-finished work-in-progress that constantly evolves with the business world it striving to succeed in. Think of a word beginning with ‘A’ – oh yes, AGILE.

Even a one man band businees with a web presence has to schedule a maintenance, review and upgrade schedule for planning, delivering and budgeting a website that is going to pay for itself.

My analogy:
A website is like a railway. You cannot build it for a fixed cost, set the trains running and walk away.

The majority of the cost has to be in a planned Opex period and Capex is a small fraction of the overall ROI period.