Happy Easter

 



Not sure what things are like with all of you but here in South Wales things are a little chilly with daytime temps averaging around 5-6 and a frost every night.  Looking at TV we appear to be one of the warmest places in the country so hopefully you are all keeping warm.

I still play the waiting game. I have all my pre-assessment checks on Tuesday 9th and then hopefully treatment starts a week later. Problems for me are mainly that my major joints in legs and back ache like hell some days, so much so that walking for more than15 minutes on the flat is an exhausting experience.  Good news is now I'm down to just 6mg of steroids (from 16mg) so sleep patterns are improving.

Rhiannon is off today (Friday) to Austria with the school  -  25 hours on a coach to Austria! - so Mum and Dad are meeting up with some friends over the weekend and then taking off for a few R&R days in Mid Wales and Ynys Mon (look it up LOL).

Have a good Easter one and all - next report in a week's time.

 

New Cars

To start this week's blog I thought I might share pictures of our two new cars:-

         

Siân's New Car

Ian's new car

We decided some time ago to replace our Vauxhall Vectra estate with a slightly smaller car which Siân was equally happy to drive but which would still accommodate the dog and the three of us. Hence the shiny new(ish) black Qasqai. My new car is of course my bus pass as it increasingly seems that I will not be back behind the wheel for at least 18 months and probably two years. DVLA don't like recovering brain tumour patients.

 

Now the progress report. Well everything is set up for a start immediately after Easter so, all being well, I will be on the new treatment within 3-4 weeks. Before then, we have a short break on Anglesy to look forward to while Rhiannon is taking a well earned break away from the crazy house on a school ski trip to Austria. Nearly 24 hours on a coach might just take a little edge off that, but I'm sure it will soon be forgotten when she gets out on the white stuff!

 

At present the biggest problem for me is the muscle wastage in my legs which makes walking any distance a real pain (literally), not to mention such mundane things as climbing the stairs.  Hopefully this will get better with gentle exercise - can't happen soon enough! 

 

Second issue is a return of the hand cramps - not as severe as previously so hopefully the calcium tabs are doing their job, but again its a minor irritation that I could do without.  However, on a more positive note, I am now only on 50% of the steroid intake that I started with and there has been a noticeable improvement in sleep patterns (even a full 5 hours the other night) and no obvious problems.

 

Thanks once again for all your prayers and good wishes.  Take care.

I Love it When a Plan Comes Together!

Well, it has taken several weeks to get here but at long last we know the what, the where and the timing of the plan to start the attack on the primary cause of my cancer problem.  Firstly, as previously reported, the full effects of the initial radiotherapy aimed at knocking out the brain tumours have taken effect.  Hair is now very thin on the head (but thick on the ground), there is quite a bit of muscle wastage, especially in my legs and I have started to develop a little bit of a tummy.  Most of this is due, they say, to the combined effects of the steroids and the radiotherapy and will gradually reverse, provided I eat sensibly and get plenty of exercise to the limits of what I can do without over doing things.  This is the reason why they leave the start of the chemotherapy for at at least 4-5 weeks to give the body time to recover.

This timetable takes us to Easter when we plan to be up in Anglesey for a few days (and Rhiannon will be away skiing with school) so we have agreed with the hospital that treatment will start on 8th April.  In fact, it starts with a series of additional blood tests, and feeding me with various vitamins to ensure that the body is ready and willing to take the treatment.

Each treatment lasts for virtually the whole day, with the drugs being drip fed into me through a line (fuller details will be found on the Treatment Plan page).  Likely and possible side effects run to several sides of A4, so should be fun to find out which, if any, I'm prone to.  Then, assuming all goes well, treatment two will be a repeat run, three weeks later.  Just before treatment three, I will have a complete check-up which will include a full scan to monitor progress.  If this is OK, then we will have treatments 3 and 4 and all should be completed by early June - Yippee!!!

Meantime, I'm reducing the steroid doses by 2mg each week, taking Calcium supplements to ward off further cramps in my hands, and adding some additional vitamin C to my daily pill popping (currently 14 tablets per day in total) to try and make sure I'm in the best possible position for the start.

I have a couple of additional visits between now and the start, perhaps the most important of which is to meet my cancer team who will look after me 24/7.

Next reports will be after those, so thanks everyone, once again for your continued support, I may not always get back to you but its good to know you are all there for me.

Move over Samson

Seems I spoke too soon - hair is now gently falling on my pillow and I am in grave danger of getting that Friar Tuck look!  Good job I don't know a Delilah  I guess!

On a positive note for the week, a visit to the GP on Tuesday revealed that, from my last blood test, I was calcium deficient and that this was probably the cause of the sever cramps in my hands which had been getting worse over the last week or so.  Now three days into taking a calcium supplements and the cramps have gone (fingers crossed - but not cramped!).  I am also getting by on just 12mg of steroids and will drop this to 8mg next week after the scheduled meeting with consultants on Monday when I hope we will find out which drug regime I will be on. 

Meantime there is the litte matter of the Six Nations this weekend - if the formbook plays out it will be a showdown at Millenium Stadium.  Should be a barnstormer - the Welsh will play out  of their skins and it could be quite brutal.  Hope not, deserves to bea showpiece for Northern hemisphere rugby.

Have a great weekend everyone and thanks once again for your continued support.

The Monday Update





A Walk in the woods

Lovely afternoon sunshine for a walk in the local woods ahead of scheduled hospital appointment this afternoon.

Regrettably, the final results are not back yet - now expected on Wednesday - so we are not much further forward.  One piece of good news is that I can start to reduce my daily steroid intake, dropping 4mg per week over the next four weeks.  This, hopefully is good news and should start to reduce the fatigue in my legs and give me a better sleep pattern.  As to the results, they could go one of two ways.

Firstly, there is a roughly 10% chance that I have a variant of non-small cell lung cancer which can be treated with a group of medicines called "epidermal growth factor receptor inhibitors".  Basically these are tablets which stop the cancer cells from dividing and thus stop them from growing.  However, this is quite rare - unless you are Chinese and female - so the more likely regime is that I will be on is a three week cycle or more conventional  drugs in combination.

These are typically administered through a thin line inserted into a vein as an infusion over a 2-3 hour period as an out-patient.  There is likely to be a series of six 3 week cycles to complete the whole course of treatment.  The leaflets suggest there is a variety of possible side effects, but not everyone suffers them all, or indeed, any.  We will have to wait and see.
So, its back to the clinic next week and we will then find out for sure which regime I'll be on.

However, treatment will not start for at least another 4 weeks as they need to make sure I'm over the radiotherapy before they start and that I can complete a further barrage of blood and kidney function tests.

More next week - now plenty of walks, jobs in the garden and a photo business to develop.

Thanks once again everyone for your messages of support - much appreciated.