Keeping On, Keeping On

I appreciate that many people must be reading this wondering whether there is bad news.

She mains in a similar condition to last night, but obviously the fight gets tougher as time goes on as her body weakens. We have seen one of her eyes slightly open today with occasional movement of the pupil and also an occasional swallowing motion.

SHARON IS STILL FIGHTING.....and while that is the case, I continue to pray to the Lord for the miracle. I am indebted to those of you who join me in this.

The Latest

First off, we are grateful to the Lord that Sharon is still with us!

It's been awful these past few days and times where things have sunk to a real low. However, at the time of writing this, the past few hours have seen Sharon appear to be quite comfortable with steady breathing but a bit of a high temperature.....it's not been like that all the time the past 2 or 3 days.

The staff here at the hospital have raised the bar yet again on showing incredible care, not only to Sharon, but to those of us who are staying with her right now. We are incredibly grateful to these wonderful people.

Thanks to folks for all your messages. Sorry I am not replying but it's all quite overwhelming now and there is one focus of our attention....no prizes for guessing who she is! What a privilege to call her my wife.

I would ask you to please pray on!

The Past Few Days

This is by far the hardest post I've had to write for Sharon so please bear with me.

Sharon didn't get to start her first radiotherapy on Friday. During the journey to London, she became quite unwell and the last part of the journey was a mad dash to the hospital whom I'd phoned ahead.

An emergency scan of her head showed a rapid progression of the cancer in her brain.

She was transferred by ambulance to another hospital in the London area where we have been since Friday night. Unfortunately, during that time, she has deteriorated quite quickly and is unable to respond/communicate. The first day or so, she was quite agitated during the times she was not asleep and was difficult to witness and deal with. The medical staff here have increased sedation to the point where she is now much more relaxed and calm and God-willing out of pain. She remains unconscious though and efforts are on pain relief and getting her comfortable.

Our family have travelled over from Cork and I'm indebted to them for Sharon's sake and also my own. This is an incredibly tough time and I would ask you to continue to pray for Sharon and her loved ones (especially those who are still separated by the miles).

Short Meeting

We drove into London this afternoon for a meeting with the neuro-consultant.  In the end, we were only in the room for about 10 minutes!

To sum things up, he is recommending that Sharon go ahead with whole brain radiotherapy and insists that this treatment is OK to do despite all of the previous radiotherapy doses to the brain (via Gamma Knife).  Whole brain radiotherapy is a much lower dose of radiotherapy but is administered to the entire area as opposed to Gamma Knife which is highly focussed.  Problem right now is that tumours are popping up thick and fast so the "blitz" approach is hoped to be a better option for right now.

Back to London tomorrow to the Marsden for a meeting with the doctor and a planning scan in preparation for the treatment.

Change of Plan

We  travelled to London yesterday for chemotherapy but after a review with the consultant he recommended that we postpone chemotherapy for the moment and focus on radiotherapy.  The main issues at the moment are in my brain and spinal chord and this chemotherapy is not affecting these areas but radiotherapy is proving to be very effective.

When I had Ganna Knife treatment for the tumour in my ear canal, they also picked up several new microscopic tumours in my brain.  Because of the number of tumours appearing over the past few months, rather than wait for them to grow and treat them with Gamma Knife, the consultant suggested using whole brain radiotherapy, which treats all of the brain but with a much lower dose of radiation.  The idea behind this is to stop new tumours developing and growing.

I have an appointment with the Gamma Knife team next Tuesday but in the meanwhile, we have another appointment in London this evening to see the radiotherapy team there about whole brain radiotherapy  and also some potential additional radiotherapy to my spine. Some of my symptoms have got worse over the weekend so they will want to do some more scans to see if there is anything else showing up and plan treatment accordingly.

I haven.t been feeling very well the last few days, walking is very unbalanced, sleep is disturbed, pain at night and issues with my eyes amongst other things, but it's difficult to tell which of these are related to tumours on the spine and which are just side effects of radiotherapy. Effectively things can get worse for 3 to 4 weeks before they get better so I need to be patient and wait and see how the treatment works!!

Andy's Visit

Andy, our pastor from church in Midleton came to visit for a couple of days this week.  We had a really good time with him and it was a real encouragement to us to have him here.  We got lots of chances to catch up and chat and to pray together and he was a huge help practically as well... Andy has a real talent for assembling flat pack furniture - even without the instructions!! Thank you so much to the church in Midleton for sending him over and to Andy for you willingness to come :)

I had my last radiotherapy on Thursday and all seemed to go well - it was tiring travelling in and out to London, especially for Dave who had to do all the driving! but we get a break now until the next chemo on Tuesday.

Radiotherapy usually takes at least 4 to 6 weeks to have an effect and can often get worse before it gets better but the results of the last radiotherapy were good so we will need to wait and see how this works.  At the moment I feel quite weak and tired and still have pain at night time, my walking hasn't improved that much but it varies from day to day.  But we've still been able to get out and about and do things so that's been good :)

BBQ Time!

We made the most of the lovely weather yesterday evening and took the opportunity to have a BBQ - only the second one this year!!

 

Health wise doing ok, still limping and off balance when I'm walking but the pain is much better and I'm really enjoying the rest over the bank holiday weekend :)

Escaped from Hospital!

I had my second radiotherapy treatment this morning and was let out of hospital straight afterwards.  As it's a bank holiday weekend, there's no treatment on Monday and I'll be treated as an outpatient on Tuesday, Wednesday and Thursday next week.

I slept better last night and the pain was much better so things seem to be improving.  Looking forward to resting at the weekend and hopefully seeing some nice weather :)

First Treatment

In hospital for a second night having had my first radiotherapy treatment this morning. I'm scheduled for a total of 5 treatments; today & tomorrow and then 3 next week. They're going to let me out tomorrow as soon as treatment is finished so I'm home for the long weekend and then back in on Tuesday. They've even rescheduled treatment to early in the morning so we can get out of here quicker!

As always, I'm being treated like royalty! The staff are amazing here and today I've seen a doctor, physio, radiotherapist, pharmacist, ocupational therapist, lots of nurses, caterers & Thomas my personal porter! As well as changing rooms....so it's been a busy day.

I also went back to visit the ward I stayed at last time and got to see Caesar, a very special Health Care Assistant we made friends with last time. It was really lovely to catch up. Then the night shift has just come on and I was really amazed to see that I'm being looked after by one of our favourite nurses from the chemo day unit...all the way from Killorglan!

I had a comfortable night last night, although I woke really early but the pain is under control which is good. So hoping tonight is better and looking forward to the escaping for the weekend :-)

Scan Results

MRI results are through and show that the area treated by radiotherapy (on spinal chord membrane) is showing a very good response :-). We are SO thankful for this news!

However, the original site of the problems in the middle vertebrae (from January 2012) appear to be flaring up again and appear to be pressing on the nerves in the spinal chord. The good news is that this is going to be treated with another course of radiotherapy and hopeful this will help relieve pain and symptoms.

Sharon has been admitted to hospital again while the daily radiotherapy sessions are being done.

To think that less than 24 hours ago, she had just finished chemo and since then an MRI has been organised, taken, results reviewed and now treatment being planned while a consultant is on a train into London! We are incredibly blessed to be on the receiving end of such medical treatment and under no illusions as to how fortunate we are.

It's Tuesday Again!

 

View from the chair today

Sharon had chemo again today and we were in London bright and early this morning after a 5.30am start.

No problems with the treatment itself, but discussing some of the symptoms from the past week with one of the doctors, they decided they would need to do another MRI (focussing on the lower back to understand what is causing increased numbness).

We have a few hours in bed before returning to London again tomorrow for an 8.30am scan and then discuss the results around midday once the scan has been reviewed.

Tai Chi?

Very thankful that I had no major side affects from the Gamma Knife treatment this time!  It was a much smaller procedure than last time and only one tumour was treated so it was much easier to take.  I had a restful weekend and have been quite tired but I feel like I'm getting some strength back now.  

This morning I went to see the local occupational therapist and she started teaching me Tai Chi!  It's a very gentle movement and breathing exercise programme that helps with posture, balance and mobility.  It looks really funny when you're doing it but I'll give it a go and let you know if it makes any difference!!

Back to London first thing tomorrow for more chemo and then looking forward to a week's break from treatment next week :-)

Out of Hospital

I was allowed home from my unexpected stay in hospital after breakfast, I had a comfortable night, and so far haven't had any side effects from yesterday's treatment :-). Thank You to the amazing nursing staff who looked after me so well.

We were amazed by how quickly this all happened yesterday and although it was a total whirlwind at the time it's great that it's over and done with so quickly and the treatment will be starting to work already. The consultant was hopeful that the gamma knife would improve the facial weakness but not certain if I will regain the hearing in my right ear. He said it's incredibly rare to find a tumour in the ear canal and of the thousands of tumours he's treated only a small handful have been in this area so it's difficult to know what the outcome will be.

We met up with some friends from the church in Swindon this evening and prayed together. It was a very special time and we are reminded again of the many many people, near and far, who continue to pray for us as we go through these difficult times. We are humbled and constantly amazed by all your love & support for us. Thank You!

Another Dramatic Day

One of our friends just sent Sharon a text with those exact words and we thought it might be a fitting title for today's blog post.

We had a meeting at the Cromwell hospital today so back in London again after a day's break. This appointment was to see the neuro-consultant about the scan that Sharon had last Friday.

In summary, that scan shows a tumour in her right ear canal which is suspected of pressing nerves leading to the right side of her face and giving the symptoms you can see for yourself in recent photos. Given that the tumour has grown pretty quickly and the gamma knife machine is being serviced next week, the call was made to treat her immediately (this afternoon).

As per the usual drill, this meant getting the frame screwed into her skull and then a more detailed MRI prior to gamma knife treatment. This scan showed that there were some additional tiny tumours developing again. These were not treated today but will be discussed among experts to decide a future course of action. The expected recommendation is to go with whole brain radiotherapy.

Right now, Sharon is back on the ward and will be kept in overnight. She is being looked after by the ward sister (who is from Youghal)! Sharon is looking great and in good spirits.

It has been a scary day. This morning we were unsure as to what the situation was and if there would be treatment options available. It has turned out that not only there are options but that treatment has already started!

Nerves have been on the edge today so yet again, Thank You to everyone reading this who has been thinking and praying for Sharon. We are indebted to you for your love and concern.

Another Long Day

We had another early start this morning (5:30) to go back to London for chemo and an appointment with the consultant. He has referred me back to the Cromwell to the gamma knife centre to review the scans taken at the Marsden on Friday and determine what course of treatment is best. They have suggested further gamma knife if appropriate or whole brain radiotherapy but we need to sit down with the consultant on Thursday and understand options and implications of each alternative.

In the meanwhile, I had chemo this afternoon. It seems to take longer each week, waiting on blood results, waiting for chemo to be made up, waiting for scalp cooling etc. We eventually got back to Swindon about 6pm and looking forward to relaxing for the rest of the evening :-)

Health Update

Just to update you on where things are with my health over the last week or so.  My leg has generally been improving and I've been walking better, although still using the stick. There are some days like today where it is painful and I have more numbness and difficulty walking but other days like yesterday when I was walking really well.

However, the right side of my face has seemed to get worse and on Wednesday I found that I couldn't hear in my right ear and it also affected my balance when walking.  We contacted the hospital on Thursday and ended up going back to London for an MRI on Friday.

We got a call from one of the doctors afterwards indicating that some of the tumours on the right hand side had increased in size from the last scan (April 16th) to the one I had on Friday (May 10th) and there is some swelling around that side as well.  We see the consultant on Tuesday so will have a clearer picture then but in the meanwhile they've asked me to increase the steroid dose to control the swelling.  It's pretty devastating news after the amazing news we had last Friday but that report was focused on the left side of the brain where the biggest tumours were so we're hopeful that that still holds true.

Latest Health Update

Thank you so much to everyone for the birthday wishes and all the texts, cards, mails over the weekend. After a really lovely Birthday weekend, we were back in London first thing on Monday morning for chemo.  Everything went well and we took the opportunity to detour via Wycliffe on the way back to see Russell, Katharine & Lowenna :)  We had a lovely time with them and it was great to see them again before they head off to Germany for the summer - Thank you for a lovely catch up & tea!! 

The good news is that the effects of the chemo seem to be much less the past two weeks.  They adjusted the dose very slightly but it seems to have made a huge difference and I haven't had any aches or pains or flu symptoms (so far).  I am taking quite a lot of steroids at the moment so that might be helping too :)  

As regards my leg, it seems to be getting stronger day by day and I have more sensation in my leg and foot.  I'm still walking with a stick but I'm getting around much easier now and although the progress is slow & sometimes frustrating it's great to see the improvement day by day.

The other issue I've been having is weakness on the right hand side of my face since I was admitted to hospital. The nerve controlling my eye, cheek & mouth movement seems to be affected so it's effecting my facial expressions (I can only smile on one side at the moment!!), my eating and my speech.  The good news is that nothing showed up on the brain MRI which can be causing this but it's a mystery as to why this is happening and it doesn't seem to be showing signs of improvement over the last couple of weeks... 

Lovely Surprise!!

I got a lovely surprise yesterday afternoon when a fabulous bouquet of flowers turned up at the door from my Aunt & Uncle in Northern Ireland.  Thank you SO much to Leslie, Grace, Eric, Karen & families :)  What stunning flowers!!

I'm continuing to improve day by day and each day my leg seems to feel slightly stronger.  Today when I woke up my foot felt less numb so I've been able to walk a little bit easier and with less of a limp.  Hoping that this progress continues and I can soon walk without a stick.

I had a visit from the local Occupational Therapist today and she gave me a new stick and looked at other aids I might need around the home (hopefully just a short term thing!).  She's also going to refer me to the Physio team in Swindon to have ongoing treatment at their centre.

Out & About

Today was a lovely day - Mary called round for a coffee this morning & I really enjoyed catching up with her :)   I went to get my hair cut which was a lovely treat and then went out and about in the beautiful sunshine this afternoon & walked around some shops with Dave.  

It's the busiest day I've had in over 2 weeks so it felt really good to be out and about!  I did feel like a 90 year old hobbling about with my VERY un-trendy walking stick! but it was good to feel like I was making progress :) 

Another One Down :)

An early start this morning as we were back to the hospital in London for chemo at 8:30...seems like we're constantly there at the moment!  We normally go on Tuesdays but it was full this week so I was scheduled for Monday instead and we found that Mondays are surprisingly much quieter and calmer than the usual chaos on a Tuesday :)   All went well and we got back to Swindon by mid afternoon so I've just been resting up since then.

Great news is that Gordon has come through his surgery well and is stable & we continue to pray that he will have a good night and a quick & steady recovery over the next few days and weeks.