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.