Back Again

Apologies for the lack of updates on the blog the past few days but as you may well have guessed, things haven't been plain sailing healthwise.

The past month or so, Sharon's right eye has been struggling to fully close. Last week, her other eye decided to close up of it's own accord so now her sight is totally reliant on the right eye. Given that it dries up quickly, this causes issues with vision and hence further impedes balance.

Nights have been pretty tough and several completely sleepless due to discomfort and agitation. Lack of sleep always seems to make things seem worse, so it's been a particularly hard few days. We should know more tomorrow as we have a meeting in London with the neuro-consultant to discuss plans for whole brain radiotherapy and discuss these latest symptoms.

Really sorry this hasn't been a bright and cheery post but we want to be open with you as to what is happening.

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!!

Ashley's 40th

Happy 40th Birthday Ashley!! 

We had a great time at Ashley's 40th Pirate Birthday party yesterday! The pirate crew were in full swing and we had great fun and a fab BBQ...Thank You!

Ashley and Nicky have been amazing friends to us and we really appreciate all that they do for us....Thank You both so much!  Hope you both have a fabulous holiday in the States and we look forward to following your progress on your blog....

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 :)