A Very Special Day!

Today we had a visit from my Aunt & Uncle from Lisburn in Northern Ireland! We were so blown away that they travelled over especially to see us just for the day and we had such a lovely time catching up with them.

They stayed with my cousin in Bristol and we got to meet Sue for lunch as well...and a quick chance to see Lyla at the end of the day. Thank You so so much for such a special day and for all the effort you made to come and see us...it meant so much to us :-)

Radiotherapy has been going well and the hospital was kind enough to rearrange my appointments so that we could go in late yesterday afternoon for treatment and then first thing this morning so that we were able leave London early and get back to Swindon to meet Uncle Leslie & Auntie Grace.

We stayed in London last night and managed to tie it in with meeting Ralph for tea so its been a really lovely time catching up with friends and family. We are very blessed!

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 :-)

Roger's Visit

Roger and Emma came to visit on Thursday and went back home yesterday - it was so good to see them and we had a great few days together.  We visited the outlet village, drove around Bath (too wet to get out and walk around!), went to ZaZa Bazaar in Bristol for an amazing meal, drove around Avebury and visited the bluebell woods in Marlborough.

I've now seen all my family in the last 4 weeks!!  It means so much that they all made such an effort to come over and visit and we've had really special times with everyone.  Thank you so much to all of you :)

Thank you too to Elaine for the fabulous lilies you sent up with Roger -  I love them!

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.

Goodbye & Hello!

We had such a special weekend with all the family and lots of really lovely memories but it was tough to say goodbye to everyone yesterday morning :(

   

We are still stunned by the fact that Dad turned up and we are SO grateful to everyone for coming over to visit - especially with the long ferry trip and an early start for work and school this morning!

We've just returned from an overnight trip to Southampton where we had booked a cheap hotel deal back in December.  It turned out that our friends from Midleton, Mark & Bev were in Southampton for the weekend as well so we got to meet up with them this afternoon.

Cheers, Mark!

Enjoying the amazing weather on Southampton Common

We had a really lovely time together, sitting out enjoying the sunshine over a pub lunch and then chilling out in Southampton common.  Thank you SO much for taking the time to spend with us today...it was so good to catch up!

Speechless!

We got a lot more than we bargained for on Friday night when we went to meet Heather & Tommy & the girls!  Not only did they travel all the way over to see us but they brought my Dad as well!!  I was totally shocked to see him and still pinching myself that he's actually here!

Dad hasn't left Ireland since he came to see me in Spain 18 years ago and he vowed he'd never get on a plane again.  We've been trying to convince him to come over on the ferry for the last few years but I never imagined he would actually do it!

We've had a fantastic weekend and it's been so lovely to all be able to spend time together over the past 2 days.  We spent time around Swindon, went shopping, drove around the countryside, had some lovely meals, went to Eastnor Castle in Hereford (where Dad's brother used to work) and had a BBQ at Marilyn's this evening to celebrate Andrea's birthday today.  Happy Birthday Andrea!! 

To top it all off I got an amazing letter in the post on Friday afternoon - a report on my latest MRI scan which was sent to the Gamma Knife centre to review.  They said that compared to the Gamma Knife treatment on March 5th, the latest MRI showed a dramatic reduction in tumours and a significant response to treatment.  The best news we could have hoped for!!

Thank you SO so much to Bryce & Carolyn & family for the amazing tulips and chocolates you sent us yesterday....another wonderful surprise and reminder of what special, thoughtful & generous friends we have  :-)

Tommy, Heather, Lauren, Isabel & Leah

Best Pals... Dave & Leah

Friday Night!! 

Dad, Heather, Isabel & I at Eastnor

Grandad & Lauren! 

Visitors from Home

SO excited that Heather, Tommy and the girls are coming for the weekend!!  They should be on their way over on the ferry right now and we really can't wait to see them this evening :)

I haven't seen them since my quick trip home in February and Dave hasn't seen them since New Year so we are really looking forward to spending the weekend with them.  The weather here is amazing at the moment so hopefully we can get out and about and enjoy the sunshine over the bank holiday.

Wishing you all a great weekend as well :)

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...