One of my main reasons for starting the Rally2Raise project was my 39 year old very good friend being diagnosed with pancreatic cancer.
As a medical professional knowing about this version of the disease I found it difficult to provide reassurance for both my own fiancé and the sufferer's close family and friends. After all, he had age on his side at 39.
As time has drawn on since the diagnosis, the news has come to me today that our pal is not well at all. We are sending every last bit of good wishes, love, hope and healing to him, if there is any justice in life he will make a full recovery. Come on lad, you’ve got a wedding to attend next November, be stronger than that dirty, indiscriminate disease. We love you very much, Rach, Barry and Archie.
Wednesday 14 December 2011
Archie on a mission
Recently, thanks to Christmas being on the approach, we have had a lot of folks staying over to see Archie before Santa comes. What has struck me is the amount of people that have said his eye oscillation is in decline. How does that work? He seems no different to me but then again I see him every day and think, due to my PND neurosis, that it looks worse.
The eye doctors were very impressed with him when we last visited and I should latch onto that seeing as he doesn’t need glasses and is otherwise fit and well.
He's on a mission now to destroy everything in reach so I have a distinct feeling his vision is decidedly fine.
Before my next update please look at Nystagmus Network website - link over there >>
Thank you so much for supporting us!
Rachel
The eye doctors were very impressed with him when we last visited and I should latch onto that seeing as he doesn’t need glasses and is otherwise fit and well.
He's on a mission now to destroy everything in reach so I have a distinct feeling his vision is decidedly fine.
Before my next update please look at Nystagmus Network website - link over there >>
Thank you so much for supporting us!
Rachel
Katherine's emotional roller coaster - Part 5
Mull, vodka & another wait...
Realising that the next appointment was booked for when I was away on Mull I had to again delay it. The next appointment was made for the 19th October. One thing you'll have realised is that all my appointments are rebooked, anyone would think I have an active social life?! :)
The week before my appointment was to be both a holiday and work on the Mull rally, plus the launch of Rally2Raise. What better place to start than this hugely popular rally? It was a great launch, we raised a good amount of money and raised the profile of who we were and what we were trying to achieve. My daughter was actively involved ensuring that everything was just right and making lists of jobs to do. To say she was excited is an understatement.
Rachel and I were very impressed with how people responded to it all and offered to help the causes. It was also a great break away from all the worries for me. The vodka consumed was record breaking and the laughs and adventures that followed will stay with me for many years. I could probably write a book just on the escapades of that week. As has been told through our blogs we have faced many setbacks but always seem to come back stronger and more determined to overcome whatever is thrown at us next. But I digress. Mull was fab for many reasons and I was ready to face my next appointment, calmer and less emotional.
Thinking that it was just going to be another scan I again went on my own! Idiot!!! Mr Parmeshwar discussed that due to the results of the biopsy not necessarily being in keeping with what the scans were showing they may have to redo the biopsies! "Oh joy" but they wanted to do the mammogram and ultrasound scan first. It could be that the lump/mass wasn't going to be there this time as some just appear with menstrual cycles. Or if there was no change at all they might just leave well alone but keep "an eye" on it. As you can guess I was hoping that it had gone altogether. So off I went again for more scans and revisiting the waiting room. At least I knew the routine this time but really wish I'd asked someone to come with me. Plus I'd expected to be back home pretty quick so hadn't had my breakfast or a cup of tea!
The ultrasound again was the point at which I just felt in shock. The nurse performing the scan said "I'm sorry Katherine we're going to have to take some more biopsies." "Oh shit" is what I thought. So it had changed :(
A quick few texts to my nearest and dearest followed but I couldn't ask my dad to come through (although he did offer) cos he couldn't have come with me for the next part anyway. Sigh.
I had to wait for the biopsies because they were having to fix the X-ray machine, so I sat anxiously waiting to go back in. I was mostly anxious because the pain I got after the last ones had gone on for a good couple of weeks and I wasn't looking forward to experiencing that again. The same lady that performed them last time called me through and briefly explained what they were to do again minus the insertion of the metal tag. I just sighed in agreement with it all. It had to be done. "CLICK CLICK CLICK CLICK CLICK" five biopsies taken. But because she wanted to be certain that she'd caught a sample of the mass she explained she was going to take some more! "Crikey"
"CLICK" "OUCH, Oooh that was a bit sore" - the local anaesthetic hadn't quite reached that bit. Another injection followed plus another three samples taken, so nine altogether!! "Wonderful" I just thought "this is gonna hurt". They are great people at the clinic like I've said all along I just didn't expect to be going through it all over again. I didn't need to see any of the medical team again, I was free to go once I'd made my appointment for the results. Can you guess what's coming next? Yup, it clashed with my first week in my new job and they couldn't change it to my day off. They only do result appointments on a Tuesday apparently. There was no way I was going to miss a day at work on my first week for my results. It was intense enough as it was. So I made it for the following week, which gave me time to swap my day off. Phew!!
Now I was free to go for a cup of tea. A quick text to my mate Mat who works in day care theatres followed and off I went for a well deserved cup of tea with some of my old work colleagues :)
Realising that the next appointment was booked for when I was away on Mull I had to again delay it. The next appointment was made for the 19th October. One thing you'll have realised is that all my appointments are rebooked, anyone would think I have an active social life?! :)
The week before my appointment was to be both a holiday and work on the Mull rally, plus the launch of Rally2Raise. What better place to start than this hugely popular rally? It was a great launch, we raised a good amount of money and raised the profile of who we were and what we were trying to achieve. My daughter was actively involved ensuring that everything was just right and making lists of jobs to do. To say she was excited is an understatement.
Rachel and I were very impressed with how people responded to it all and offered to help the causes. It was also a great break away from all the worries for me. The vodka consumed was record breaking and the laughs and adventures that followed will stay with me for many years. I could probably write a book just on the escapades of that week. As has been told through our blogs we have faced many setbacks but always seem to come back stronger and more determined to overcome whatever is thrown at us next. But I digress. Mull was fab for many reasons and I was ready to face my next appointment, calmer and less emotional.
Thinking that it was just going to be another scan I again went on my own! Idiot!!! Mr Parmeshwar discussed that due to the results of the biopsy not necessarily being in keeping with what the scans were showing they may have to redo the biopsies! "Oh joy" but they wanted to do the mammogram and ultrasound scan first. It could be that the lump/mass wasn't going to be there this time as some just appear with menstrual cycles. Or if there was no change at all they might just leave well alone but keep "an eye" on it. As you can guess I was hoping that it had gone altogether. So off I went again for more scans and revisiting the waiting room. At least I knew the routine this time but really wish I'd asked someone to come with me. Plus I'd expected to be back home pretty quick so hadn't had my breakfast or a cup of tea!
The ultrasound again was the point at which I just felt in shock. The nurse performing the scan said "I'm sorry Katherine we're going to have to take some more biopsies." "Oh shit" is what I thought. So it had changed :(
A quick few texts to my nearest and dearest followed but I couldn't ask my dad to come through (although he did offer) cos he couldn't have come with me for the next part anyway. Sigh.
I had to wait for the biopsies because they were having to fix the X-ray machine, so I sat anxiously waiting to go back in. I was mostly anxious because the pain I got after the last ones had gone on for a good couple of weeks and I wasn't looking forward to experiencing that again. The same lady that performed them last time called me through and briefly explained what they were to do again minus the insertion of the metal tag. I just sighed in agreement with it all. It had to be done. "CLICK CLICK CLICK CLICK CLICK" five biopsies taken. But because she wanted to be certain that she'd caught a sample of the mass she explained she was going to take some more! "Crikey"
"CLICK" "OUCH, Oooh that was a bit sore" - the local anaesthetic hadn't quite reached that bit. Another injection followed plus another three samples taken, so nine altogether!! "Wonderful" I just thought "this is gonna hurt". They are great people at the clinic like I've said all along I just didn't expect to be going through it all over again. I didn't need to see any of the medical team again, I was free to go once I'd made my appointment for the results. Can you guess what's coming next? Yup, it clashed with my first week in my new job and they couldn't change it to my day off. They only do result appointments on a Tuesday apparently. There was no way I was going to miss a day at work on my first week for my results. It was intense enough as it was. So I made it for the following week, which gave me time to swap my day off. Phew!!
Now I was free to go for a cup of tea. A quick text to my mate Mat who works in day care theatres followed and off I went for a well deserved cup of tea with some of my old work colleagues :)
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