3rd and final blog

These are lovely natural shots of Ian and myself on our hols (thanks Linda and Paul!!) just over a week ago up in the Snowdon and Anglesey area.  As you can see the snow made the scenery so picturesque and although cold we so enjoyed the blue skies and fresh air. 

 

It was to be our last holiday as Ian passed away today.  His body gave up fighting the deadly disease - his kidneys and lungs failed.

 

Ian first went to the Doctor in the second week of January with the initial symptoms and the brain tumours were identified on the 22nd through a CT scan.  He went through a course of radiotherapy and we were all set for the chemo to begin this week.  Over the last two weeks, however, his body started to weaken culminating in the fall at the Doctor's surgery just last Tuesday. 

 

In many respects this was a blessing in disguise as he was immediately rushed to hospital to receive the appropriate treatment.  Only the day before yesterday the consultants were confident that Ian could soon return home with the correct support and facilities.  Over the last 48 hrs, however, this all changed as Ian's breathing became more laboured and the high blood sugar and low salt level and blood pressure steadfastly refused to improve.  I was told that all food and drink restrictions were lifted so I knew that it was just a waiting game.  On that basis, I dashed to the hospital shop to buy him his favourite Joe's icecream....a treat he really loved!

 

I left the hospital at 11 last night and up until then Ian was mainly awake and able to communicate and critically, was not in pain.  On my return this morning around 06.30 that had changed and he remained drowsy without communication the rest of the day.  His pain and discomfort increased throughout the day even though the consultants tried to contain with morphine.  Karen and John brought Rhiannon to the hospital in the afternoon and although no words were spoken by Ian, the way he ensured he was holding my or Rhiannon's hand was so important.  He knew we were there for him.

 

Rhiannon left the hospital later that afternoon and Ian passed away an hour later.  It all seems so quick but we count our blessings that he did not suffer for any extended period.  We have shed many tears and I admit to howling when on my own but Rhiannon and I will move on and we know he is looking down on us (probably still tutting at me when I don't do things they way he would!!).

God bless you Ian - we will love you forever.

Thursday 11th update

My 2nd blog!  Unfortunately, not great news. 
Ian is now in the Clinical Decision Unit in Morriston Hospital.  This is a holding ward between A&E and a "proper ward" but he is getting good care.  He is still incredibly weak but they are pumping him full of insulin to address the diabetes.  I am meeting the Diabetes nurse tomorrow to learn how to inject Ian twice daily.  I don't think I'll have a problem in "needling" him :-)
His fluid intake is strictly limited to address the very low salt levels and now, following the CT scan, they don't believe that he has a blood clot on his left lung but it is definitely not operating effectively.  The Lung Cancer team are meeting Monday and will review all the X-rays/scans/medical notes to agree on next steps.  Inevitably, the chemo will not commence next week as they need Ian to be stronger and for his diabetes to be under control. 
Both Ian's hearing and vision have deteriorated with the steroids (and his glasses were twisted and scratched in the fall) so he struggles with reading or communicating to anyone whilst in the ward.  He is drowsy anyway and in both visits today he dozed off whilst I was rabbiting.....I know some of you will think a lot of people have done this to me but this is the first time Ian has been brave enough to do so!!
The Cancer Case lead, who I also met today, is going to talk to the Palliative team to see what help they can provide for when comes home, for example, around sleeping downstairs etc.  I suspect though that Ian will be in hospital for a few more days yet.
Ian is now sporting two back eyes from the fall and with a nasty cut and bloody large plaster on his forehead he looks like he suffered a couple of rounds in a boxing ring.  I won't load a photo on this blog....I'm not that mean!
Thanks again for the good wishes and calls.  I will probably send my 3rd blog on Tuesday night when I, hopefully, will have received feedback from the Lung Cancer team at the hospital.
Sian x

Sian's entry

Finally found the application to enter this into Ian's blog.  Ian can't as he is in hospital.  Unfortunately, Ian fell in the doctors' surgery car park this morning.  He smacked his nose/forehead and a finger but was too weak to get up again.  Our doctor called an ambulance and he is now in Morriston hospital.  His blood sugar was very high, salt levels very low and blood pressure low.  They believe that the steroids have contributed to this and have brought on diabetes.  In addition, he may have a blood clot on the lung and they have taken a CT scan of his chest this evening to assess fully.  We will know the results of that tomorrow.

Ian will be kept in hospital for a few days to help stabilise his system and build up his strength.  I suspect that it is now unlikely that chemo will go ahead next week.  I will keep you posted in Ian's absence now that (I think) I have mastered this technology?!  Thanks for all the kind wishes and supporting messages   Sian x

 

A Damp Squid

Spent over two hours at the hospital, handed a lot of information leaflets and a talk on various possible side effects.  Given a jab of folic acid so not much further forward than yesterday.  I have to attend the hospital on Monday for the final blood check to confirm start of chemo on Tuesday.

Zero sleep last night for either of us so we have to work on that - separate rooms no doubt!

Tomorrow it's eye tests for RP and for me and I also need to get hearing aids sorted.  In the interim trying hard to eat some food that Sian keeps preparing for me!!  Hoping the weakness and lack of energy levels start to improve as very draining for all.

Post Easter Update

Well we are back from our trip to North Wales and had a wonderful time, although things could have been better as none of our rooms had lift access which was a real struggle for me.  I get weaker by the day and my appetite gets smaller, so by Friday it was as much as I could do to get in and out of the car.



Coming off the steroids can produce a variety of problems and I seem to have a good selection of these:

Irritation of the stomach lining

Steroids can irritate the lining of the stomach and may cause a stomach ulcer, or make one worse. I feel nauseus a lot of the time and have little appetite.     

Temporary changes in blood-sugar level

This may happen if you have high-dose or long-term treatment. I just feel completely drained with little energy.....yes - worse than before :-)

Fluid retention

My ankles and fingers are starting to swell to a grand size so hopefully I will be getting some more pills to sort that out.

 

Appetite changes and weight gain

Whereas the steroids increased my appetite, putting weight on around the middle and jowls etc, now I have no appetite.  One extreme to another!

Muscle wastage

My leg muscles in particular have wasted and I have real problems with stairs, slopes, getting in and out of the car etc.  Hence, on the Anglesey break we were unable to do the walking we'd planned.  It has also led to real pains in my hips and back.......there isn't much of me that doesn't ache at the moment.

My eyesight and hearing have both been affected and I have a visit to the optician on Weds and need to see the ear specialist. 

Not surprisingly with all this going on, a lot of people then suffer with depression.  I am still trying to keep positive and having Sian running around after me helps me to smile!

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.
 

 

Dydd Gŵyl Dewi Hapus

Well the end of another week and all seems well in the world.  Just a few minor after effects from the radiotherapy - tired leg muscles mainly but even my hair has stayed in so far (so why or why did I have that #1 cut I ask myself?).  Running out of excuses now so today means trying to catch up on lots of odd jobs around the house and getting ready for the weekend.  Rhiannon is singing with her drama group in Swansea Saturday lunchtime and then she and and a good mate get to see some new band in Cardiff on Sunday - one direction I think they might be called(!)  First concert on her own without a parent alongside - where did the last 14 years go?

For me, next hospital appointment is Monday when we will start the regime to tackle stage 2 and also reduce the steroid intake.  More news after that.  Have a wonderful weekend.

Great Weekend

With Wales and England winning yesterday and the triumph at Wembley this afternoon its been a good weekend.  Only the Scarlets spoiled the show but they will bounce back and beat those pesky Osprey's to fouth place in the Rabo.
Tomorrow is last treatment day and then I have a week off until check-up time the following Monday and we (hopfully) find out about the treatment for stage 2.  Must say that so far things have not been to bad although I'm certainly much more tired than before.
Finally, thank you to everyone who has responded to this Blogg - its been great to hear from you you all and to know that I (and the family) have the background support of so many people.
Take care everyone - more next week.

(nearly) Gone

Well Day Four of the treatment is now complete so it was off to the hair dresser and a quick run over with a #1 and I feel completely bald.  For some reason she did not think it funny when I asked her to stick it all back on, but then again I am already getting used to the new look so this may be the new me when it all starts to grow back in a couple of months time.  However, complete hair loss beckons next week so the razor will be coming out at some stage.

Now its a weekend of R&R and the little matter of some serious rugby viewing tomorrow (Saturday).  So come on Wales, England and the Scarlets and make it a clean sweep of victories to make my day.



Hair Today ..........................

Well day three of radiography completed, just two more to go. Trimmed up the beard today to work out what "style" I would be adopting for the future as tomorrow I have a close shave at the hair dresser.  They tell me that the hair - what's left of it anyway - will start coming out by the middle of next week so before I start looking even more un-kempt than normal, I have decided to have a close shave  -  King & I style.  Having looked at the forecast, I have picked the coldest weekend of 2013 for this.   More tomorrow (perhaps!)

What a Difference a Day Makes!

No sooner had the last post reached the big world and the phone call comes through "Mr Peacock, can you come in to see us please tomorrow?"
Well tomorrow was today (Tuesday 19th February) and I am now firmly back into the loop and have started on a treatment regime.
Basically they have decided to try and kill off the tumours in my brain first and get the pressure down so I can be slowly taken off the steroids.  First of 5 sessions of radiotherapy this afternoon so the course will be completed on Monday.  Hopefully that will make them inactive and they will shrink away and that will, be that at least for the time being.
At the same time, my samples have gone away to a research lab in Cardiff to see how they will then treat the underlying cause of the problem.  Basically I do not have small cell lung disorder but an unusual (but not rare) form of the non-small cell type. These results will then dicate the treatment regime for the next phase - chemo for sure but perhaps the newer tablet based variety.  We will know in a couple of weeks.
For now its a daily visit to hospital for the 15 minute treatment session and going completely bald.  Watch this space - if I feel brave may even be a picture or two in it!!!!!

Where or where has my paperwork gone?

And on the working fifth day  ......................  we manage to get through to the new team and are told they have not had any of the paperwork which is why we have not had a call!  Now we have at least got the two teams talking we may  -  just may  -  get some action.  Who knows, might even be this week!!!
Leave plenty of time for walks on Gower though and, thankfully, without rain although a littlle chill.  Dog will enjoy as well as us!

Another week slips by and still we wait for a call to action.  Having the "lung team" headquartered in another hospital does not help the cause as records etc need to be moved around within the health district.  Hopefully this will get resolved early next week - knowing our luck we will be called in at the same time as we are planning to do other things to celebrate Siân's birthday!  The waiting for decisions and then sight of a campaign to get this thing beaten is getting painful!

Apart from the impatience, the steriods are still doing their job and holding off the pains in the head (which also need to be resolved as well as the main problem).  They have, however, caused a change in taste buds (can barely remember what coffee should taste like) and also appear to be causing cramping in my hands (although not a known side-effect).  The most recent nail in the coffin is that the Doctors have told me to stop driving until all the test results are in and they can judge if I would be a danger on the roads.  Likelihood is that I will stay off the road for sometime so we are looking at a complete change of transport, replacing two cars with one practical solution.  Should keep us entertained!

Valentine's Day

Out for a pub lunch and some R&R.
The wheels of the various departments continue to roll but ever so slowly  - it would try the patience of a Saint!  As I said to somebody the other day, I feel as though I am all geared up for the big battle ahead but that its just the general hasn't told me where the battle is about to start!

Saturday Night

Saturday night and an opportunity to have a little fun.  Off we all went to Cardiff to watch the excellent Paloma Faith in concert.  Fabulous.

The Story so Far!

 

This is my first attempt at creating a blog, something I have always shied away from in the past but now I have decided to give it a whirl, mainly to record the current and future events in my life which are going to have a dramatic impact on the family as a whole.  First, a little background:-

 

Since the New Year, I started having some problems with finding the right words whilst speaking and then by the third week of January I was struggling badly with comprehension – reading and writing.  To cut a long story short on the 22^nd January, having seen our doctor for the second time in a week, had a brain scan that afternoon and they found growths/swellings behind my forehead.  The consultant believed these to be secondary tumours, referred me back to the GP with strong advice on further checks and scans.  

Following a full-body scan the next day (the day of the snow in the South Wales area which added to the fun of the day), they found further swellings in my neck lymph nodes and took some samples for biopsy.  These proved inconclusive so further samples were taken using ultra-sound - another week of waiting for results!  We have now been given more information by the ENT consultant in Singleton hospital.  Progress, however, is limited as we are now being transferred to another specialist team.

 The biopsy taken from my lymph node in his neck has indicated that this is an “adeno” type cancer which basically means a gland cancer.  The likelihood is that it stems from a primary in the lung area, though this didn’t show up on the chest or body CT scan.

We now await the thoughts of a specialist Oncologist (cancer consultant) who will work with the Lung specialist team to determine the best treatments moving forward.  Inevitably, this will be chemotherapy and perhaps targeted radiotherapy.

 

In the interim, I have been on a heavy dose of steroids which have reduced the swelling in my brain enabling me to get back into some design of web sites and photography and a new blog!