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 :)
Monday 21 November 2011
Katherine's emotional roller coaster - Part 4
The Long Wait...
I can't quite remember what day I received the phone call but having a missed call on my phone from the breast clinic was a scary thing. I phoned them back feeling quite shaky. Fortunately (or not) it was just a call to say there had been such a large number of samples to be tested and there was going to be a delay as to when my results were through. It would be another week.
A few thoughts went through my head, I'm not going to have to face an interview with the thought I'd be picking my results up afterwards (the Blackpool interview). I wouldn't have to face an interview knowing my results (the Lancaster one). But also, that I couldn't make the next result appointment because I was going on my long awaited and deserved holiday with my daughter on Thursday. I'd already had to delay my holiday because of the Lancaster interview, I wasn't going to be able to delay it again. "Oh for f**ks sake" I thought, the frustration was so overpowering. I explained to the lady on the phone that I would be away and so the results appointment was made for when I returned. They couldn't relay the results over the phone so I had to wait. 30th August!! Oh well, at least I was going to be away in Scotland spending time with my daughter, Rachel & gorgeous Godson Archie. Then later my Dad and Pam were coming up too :)
It was during this time that Rachel was developing the concept of what is now known as Rally2Raise. Plans were being formulated and contacts being made, it was a great way of gaining perspective in my life and having, along with my holiday, another focus. Plus of course I knew I'd got the job as an ODP at Blackpool Victoria Hospital! Wahooooooooooo!
On my hols now, the days passed by and I can honestly say I hardly thought about the results. Quite a contrast to the days previously when sleep was sparse and thoughts were frantic and extremely depressive. The holiday was undeniably the best medicine in coping with things.
30th August came and off I went with Dad to meet Caroline the Macmillan Breast care nurse at the breast clinic for my results. She was lovely, the result showed it as normal breast tissue (??), no malignancy. A huge relief for my Dad, and although, yes it was for me too, I still wanted to know what it was and questioned in my head whether they actually got the sample they needed. Seeing as how the lump was so small they might have missed it?
They wanted to monitor the lump and so I had another appointment made for four weeks time. They had to allow time for all the bruising and swelling to go before they could scan it again. They were looking for any growth or change in the lump. I just wanted it out......
I can't quite remember what day I received the phone call but having a missed call on my phone from the breast clinic was a scary thing. I phoned them back feeling quite shaky. Fortunately (or not) it was just a call to say there had been such a large number of samples to be tested and there was going to be a delay as to when my results were through. It would be another week.
A few thoughts went through my head, I'm not going to have to face an interview with the thought I'd be picking my results up afterwards (the Blackpool interview). I wouldn't have to face an interview knowing my results (the Lancaster one). But also, that I couldn't make the next result appointment because I was going on my long awaited and deserved holiday with my daughter on Thursday. I'd already had to delay my holiday because of the Lancaster interview, I wasn't going to be able to delay it again. "Oh for f**ks sake" I thought, the frustration was so overpowering. I explained to the lady on the phone that I would be away and so the results appointment was made for when I returned. They couldn't relay the results over the phone so I had to wait. 30th August!! Oh well, at least I was going to be away in Scotland spending time with my daughter, Rachel & gorgeous Godson Archie. Then later my Dad and Pam were coming up too :)
It was during this time that Rachel was developing the concept of what is now known as Rally2Raise. Plans were being formulated and contacts being made, it was a great way of gaining perspective in my life and having, along with my holiday, another focus. Plus of course I knew I'd got the job as an ODP at Blackpool Victoria Hospital! Wahooooooooooo!
On my hols now, the days passed by and I can honestly say I hardly thought about the results. Quite a contrast to the days previously when sleep was sparse and thoughts were frantic and extremely depressive. The holiday was undeniably the best medicine in coping with things.
30th August came and off I went with Dad to meet Caroline the Macmillan Breast care nurse at the breast clinic for my results. She was lovely, the result showed it as normal breast tissue (??), no malignancy. A huge relief for my Dad, and although, yes it was for me too, I still wanted to know what it was and questioned in my head whether they actually got the sample they needed. Seeing as how the lump was so small they might have missed it?
They wanted to monitor the lump and so I had another appointment made for four weeks time. They had to allow time for all the bruising and swelling to go before they could scan it again. They were looking for any growth or change in the lump. I just wanted it out......
Thursday 17 November 2011
Katherine's emotional roller coaster - Part 3
Tick Tock....
After my appointment I went back to work with Ashia to see Pauline and try and explain all that had gone on. I was mentally exhausted and the big hug I got from Pauline was a great comfort to be honest. Again, reassurance came that all would be ok regardless of the result. I was sent home, sore and dazed but as it was my last ever day as a student ODP at Lancaster the next day she asked me to come in just so I could say my goodbyes etc.
I went home to a very quiet house that afternoon, my daughter was away on her holidays with her dad. I just felt so lost and not looking forward to telling my dad about the appointment and consequently what had been found. He was at work until 6pm so I thought I'd go round and see him at 7. Time has never gone so slowly and I just wound myself up with the stupid thoughts of "what if?" over and over.
I phoned my daughter and tried to be as normal as possible (extremely hard for me I can assure you at the best of times!). She was excited about all the things she'd been up to that day and the upcoming events at the clubhouse that evening. I felt so sad inside for what Bethany might actually have to try and comprehend when the results were through. She is an extremely bright little girl and knows way too much about "sad stuff" for an 8 year old already that I decided I wasn't going to tell her anything until I had to. Her worst nightmares and dreams have been about losing me or her dad so why would I tell her about this when I had no answers? With that in mind it was best that I kept those who knew to a minimum as well as I really didn't have anything to tell did I?
Now to tell my dad! OH GOD! I felt so sick. As soon as I walked through their door I know they (my dad and step mum, Pam) knew something was up. I can't remember what I said I just know it came out more as a wail then the calm manner I'd envisaged and planned. Damn it! I'm way too emotional sometimes. More hugs followed and the telling off for not phoning him at work! Also, what shocked me most was how calm he was. It was definitely what I needed, my brain was just in overdrive and needed this calmness to make me see that all was fine. We would face whatever happened as a family and I would be supported throughout. At times I do try and face things on my own, I'm extremely stubborn and too independent for my own good. It's normally the wrong times too. A sense of relief washed over me and knew my next hurdle was just getting to results day without spontaneously combusting.
My last day as a student had arrived, a day that I'd been looking forward to for the last 4 years had come at last. What was supposed to be a day of celebrating achievement and an end to the stresses of "studentdom" had been marred by this bloody lump! Luckily as it was my last day those at work probably thought the tears that kept welling up in my eyes were due to the fact it was my last day and that the only four students on the course not to have got a job before qualifying was us four at Lancaster. It was quite a good shield to hide behind as it meant I didn't have to explain to everyone what was up. The truth is I just wanted to go home and be away from everyone, it's how I normally deal with events in my life. I hadn't slept all night, I was extremely sore and couldn't stop thinking about the worse case scenario. I followed Ashia around all day, she was like my comfort blanket. I really didn't care what anyone thought about that either. Like I've said before, she is great at distraction and helped me smile and giggle. I just hoped I hadn't spoilt her last day by being an emotional pain in the butt. I don't think I'll forget the last goodbye in Recovery when all four of us (I did tell my uni mates about the lump) and Pauline said our last goodbyes because we just all started crying. What a day!!
Tuesday was to be result day, only 6 days to go! Or so I thought!!
After my appointment I went back to work with Ashia to see Pauline and try and explain all that had gone on. I was mentally exhausted and the big hug I got from Pauline was a great comfort to be honest. Again, reassurance came that all would be ok regardless of the result. I was sent home, sore and dazed but as it was my last ever day as a student ODP at Lancaster the next day she asked me to come in just so I could say my goodbyes etc.
I went home to a very quiet house that afternoon, my daughter was away on her holidays with her dad. I just felt so lost and not looking forward to telling my dad about the appointment and consequently what had been found. He was at work until 6pm so I thought I'd go round and see him at 7. Time has never gone so slowly and I just wound myself up with the stupid thoughts of "what if?" over and over.
I phoned my daughter and tried to be as normal as possible (extremely hard for me I can assure you at the best of times!). She was excited about all the things she'd been up to that day and the upcoming events at the clubhouse that evening. I felt so sad inside for what Bethany might actually have to try and comprehend when the results were through. She is an extremely bright little girl and knows way too much about "sad stuff" for an 8 year old already that I decided I wasn't going to tell her anything until I had to. Her worst nightmares and dreams have been about losing me or her dad so why would I tell her about this when I had no answers? With that in mind it was best that I kept those who knew to a minimum as well as I really didn't have anything to tell did I?
Now to tell my dad! OH GOD! I felt so sick. As soon as I walked through their door I know they (my dad and step mum, Pam) knew something was up. I can't remember what I said I just know it came out more as a wail then the calm manner I'd envisaged and planned. Damn it! I'm way too emotional sometimes. More hugs followed and the telling off for not phoning him at work! Also, what shocked me most was how calm he was. It was definitely what I needed, my brain was just in overdrive and needed this calmness to make me see that all was fine. We would face whatever happened as a family and I would be supported throughout. At times I do try and face things on my own, I'm extremely stubborn and too independent for my own good. It's normally the wrong times too. A sense of relief washed over me and knew my next hurdle was just getting to results day without spontaneously combusting.
My last day as a student had arrived, a day that I'd been looking forward to for the last 4 years had come at last. What was supposed to be a day of celebrating achievement and an end to the stresses of "studentdom" had been marred by this bloody lump! Luckily as it was my last day those at work probably thought the tears that kept welling up in my eyes were due to the fact it was my last day and that the only four students on the course not to have got a job before qualifying was us four at Lancaster. It was quite a good shield to hide behind as it meant I didn't have to explain to everyone what was up. The truth is I just wanted to go home and be away from everyone, it's how I normally deal with events in my life. I hadn't slept all night, I was extremely sore and couldn't stop thinking about the worse case scenario. I followed Ashia around all day, she was like my comfort blanket. I really didn't care what anyone thought about that either. Like I've said before, she is great at distraction and helped me smile and giggle. I just hoped I hadn't spoilt her last day by being an emotional pain in the butt. I don't think I'll forget the last goodbye in Recovery when all four of us (I did tell my uni mates about the lump) and Pauline said our last goodbyes because we just all started crying. What a day!!
Tuesday was to be result day, only 6 days to go! Or so I thought!!
Wednesday 16 November 2011
So how did Rally2Raise come about? Rachel tells us!
I've been asked quite a lot recently about how the Rally2Raise concept came about, well, sit back, get a cuppa and I'll tell you a little story...
As you're hopefully aware by now we are raising money for three charities, nystagmus, cancer research and multiple sclerosis (MS). At the Scottish rally in "summer" 2011 I discovered that a good friend of Barry and myself had pancreatic cancer. It was a bit of a shock as he's very young and works outdoors in a profession that keeps him physically fit.
On the very long truck journey from Dumfries to home near Aberdeen I started to think. I couldn't use my medical skills to help, except offer general advice as a friend and I hated that feeling. I remember that Jemma Bellingham and myself did a very successful campaign in 2007 to raise money for cancer research so I considered doing the exact same again but figured so many people followed suit that the rally family would probably be bored of that now. As I sat looking out of the window I started to form a plan. What am I good at? Baking, being loud, laughing, speaking to folk... How about making it a year long campaign with a logo and loads of events but not just in aid of cancer research?
I had an idea of a two car team, one with a novice driver (me) with a co-driver who's never even sat in a rally car and knows nothing about it. The other an experienced driver with a celebrity co-driver. Again, inexperienced probably. The plan being to work towards competing on the Scottish rally in 2012. Now, the first part is happening, I have a rally car and Katherine Begg, rally novice, is co-driving. The celeb co-driver is actually under discussion, along with the experienced FEMALE driver. Watch this space!
When I approached Katherine with the idea I had only decided on cancer research and needed inspiration so she suggested the MS Society as her mum had passed away far too young from the condition, that was a no brainer, absolutely yes!
My baby had recently been diagnosed with nystagmus so I looked into charities and discovered the brilliant Nystagmus Network. A very worthy cause, helping the sufferers of this often debilitating condition, although my son’s does not require glasses, it can be so bad that people are registered blind. Most sufferers never drive. The eyes move involuntarily from side to side, up and down and it can be caused by a number of things such as injury, disease and idiopathic nystagmus which basically means they have no clue how it started but there’s no sinister reason for it. My son will be monitored until he stops developing, he has been through many tests and thankfully he has idiopathic nystagmus. I want to raise money to not only help sufferers but allow more research to be done as there have been very few advances in treatment since my dad was diagnosed with the condition as a child.
The postnatal depression awareness part of Rally2Raise is to help erase the stigma attached to it and help women realise they're not a failure, it's very common, more common than is known. It's the same as any disease that needs simple treatment to be cured. And it most certainly can be cured. I suffered quite badly after my son arrived in the world and made the decision immediately to let everyone know. I wasn't ashamed, it wasn't a dirty secret, my hormones were all over the place and all I had to do to cure it was take one pill per day. Ok, at first I felt a bit shattered but the improvement was more or less immediate, although it can take up to two weeks to work. Health visitors are there to help, hiding it won't do ladies any favours - that can lead to future issues that could take longer to sort out. I felt unable to cope at first but now realise this was the "depression".
I do think if the name was changed to postnatal syndrome or similar then the stigma would be eradicated. Unfortunately, despite a lot of searching, we were unable to find a national charity to support but, I didn't want to leave it out as I think if we can help just one person realise they have it and they're not on their own and see their GP, we've done our job.
So there you go, that’s the reason for Rally2Raise. Please support us!
As you're hopefully aware by now we are raising money for three charities, nystagmus, cancer research and multiple sclerosis (MS). At the Scottish rally in "summer" 2011 I discovered that a good friend of Barry and myself had pancreatic cancer. It was a bit of a shock as he's very young and works outdoors in a profession that keeps him physically fit.
On the very long truck journey from Dumfries to home near Aberdeen I started to think. I couldn't use my medical skills to help, except offer general advice as a friend and I hated that feeling. I remember that Jemma Bellingham and myself did a very successful campaign in 2007 to raise money for cancer research so I considered doing the exact same again but figured so many people followed suit that the rally family would probably be bored of that now. As I sat looking out of the window I started to form a plan. What am I good at? Baking, being loud, laughing, speaking to folk... How about making it a year long campaign with a logo and loads of events but not just in aid of cancer research?
I had an idea of a two car team, one with a novice driver (me) with a co-driver who's never even sat in a rally car and knows nothing about it. The other an experienced driver with a celebrity co-driver. Again, inexperienced probably. The plan being to work towards competing on the Scottish rally in 2012. Now, the first part is happening, I have a rally car and Katherine Begg, rally novice, is co-driving. The celeb co-driver is actually under discussion, along with the experienced FEMALE driver. Watch this space!
When I approached Katherine with the idea I had only decided on cancer research and needed inspiration so she suggested the MS Society as her mum had passed away far too young from the condition, that was a no brainer, absolutely yes!
My baby had recently been diagnosed with nystagmus so I looked into charities and discovered the brilliant Nystagmus Network. A very worthy cause, helping the sufferers of this often debilitating condition, although my son’s does not require glasses, it can be so bad that people are registered blind. Most sufferers never drive. The eyes move involuntarily from side to side, up and down and it can be caused by a number of things such as injury, disease and idiopathic nystagmus which basically means they have no clue how it started but there’s no sinister reason for it. My son will be monitored until he stops developing, he has been through many tests and thankfully he has idiopathic nystagmus. I want to raise money to not only help sufferers but allow more research to be done as there have been very few advances in treatment since my dad was diagnosed with the condition as a child.
The postnatal depression awareness part of Rally2Raise is to help erase the stigma attached to it and help women realise they're not a failure, it's very common, more common than is known. It's the same as any disease that needs simple treatment to be cured. And it most certainly can be cured. I suffered quite badly after my son arrived in the world and made the decision immediately to let everyone know. I wasn't ashamed, it wasn't a dirty secret, my hormones were all over the place and all I had to do to cure it was take one pill per day. Ok, at first I felt a bit shattered but the improvement was more or less immediate, although it can take up to two weeks to work. Health visitors are there to help, hiding it won't do ladies any favours - that can lead to future issues that could take longer to sort out. I felt unable to cope at first but now realise this was the "depression".
I do think if the name was changed to postnatal syndrome or similar then the stigma would be eradicated. Unfortunately, despite a lot of searching, we were unable to find a national charity to support but, I didn't want to leave it out as I think if we can help just one person realise they have it and they're not on their own and see their GP, we've done our job.
So there you go, that’s the reason for Rally2Raise. Please support us!
Saturday 5 November 2011
Nystagmus - what is it?
Nystagmus is an involuntary movement of the eyes which often seriously reduces vision. Few people with nystagmus can drive and most encounter some difficulties in every day life, education and employment.
I was unaware that I had a family history of nystagmus. I knew my dad had poor eyesight and that his eyes moved a bit but, as I'd grown up with it, to me it was completely normal. Ok, my dad couldn't drive because of it but again, because I grew up with it, I never gave it any thought.
After my son was born and we got his reflux under control we settled down to family life. I began to notice Archie's eyes moving around at about four weeks but, thinking he was just very inquisitive, I left it. Then folk started to point it out and ask if it was normal, well, now you come to mention it I'm not sure. Away I went to Google and read about nystagmus, still not making the connection to my dad. We made an immediate doctor’s appointment and unfortunately, although the doctor had heard of the condition, she was clueless as to how to proceed and even asked what I'd discovered on Google!
We were made to leave the room while she called the hospital to speak to a specialist. This was making me very nervous indeed as, being in the medical profession myself, I know this means they're quite worried. We were called back in and informed we'd be seeing a consultant at the children’s hospital within three weeks. She couldn't answer any of my questions so I went home and informed my family via text message as I didn't want to speak to anyone. It was now that my dad called and told me about his condition. I was totally shocked but relieved as he lives a perfectly normal life and you wouldn't know he had it. Although, now knowing this was the reason my dad couldn't drive, I looked into it again and discovered that a high percentage of sufferers cannot drive. Coming from a family that is heavily into motorsport and having a dad that was a professional rally driver and world champion I thought this may hit Archie very hard when he grows up so I made the decision there and then to tell him from an early age should that be the case.
At our first appointment we saw the consultant and he immediately asked if he could video the eye oscillation as they don't see that many babies with such a pronounced movement. I agreed. As soon as the camera came out Archie started smiling and it broke my heart as he was unaware of what it was for. He had an eye drop test and a whole lot of others that I can’t remember but the general consensus was that he would have to undergo a MRI scan to check there was nothing sinister going on in his brain. I immediately knew from my work that this would require a general anaesthetic. Not my ideal situation but if it meant getting a diagnosis and possibly a treatment I would cope. He was also to have a light test to determine the wiring of his retina to the brain.
The day of the light test we went in and I was, as usual, anxious with Archie taking it all in his stride. We were straight into the room and I sat on a chair with him on my knee while electrodes were attached to his head. They don't deliver a shock by the way, they just measure the brain waves. He loved the wires hanging off them so I had to keep him occupied so he didn't wreck them. Then the lights came on and he was in awe! He loves lights, so much so that he tried to pull the lamp closer to him and broke it, yes my baby is freakishly strong! At the end of the test the lady conducting them said all was normal. Excellent!
Next test was the dreaded MRI. We arrived in the morning with a starved child, not fun. We stuck him in the cot provided and proceeded to entertain him to keep his mind off the rumbly tummy. He loved the attention. I found out we were first on the list with him being the youngest and we were sent for on time. We made our way down the twisting maze to the MRI anaesthetic room and I discovered I wasn't as anxious as I expected. Upon entering the room the anaesthetist wasted no time, gave him the oxygen and gassed him down with no messing, I couldn't help but laugh as Archie tried to eat the anaesthetic tubing. Hungry boy! My other half, Barry, was very obviously shocked I didn't come out in tears, as was I as I fully expected it. We had time for lunch then returned to pick him up. He didn't cry, he just went straight back to sleep then devoured a bottle and a full jar of mango when we got back to the ward. We were allowed home pretty fast.
We heard nothing for ages from the hospital but were assured that if there was anything untoward they would have picked it up immediately. So I continued with the visual stimulation and discovered there is nothing wrong with his eyesight as I can't leave the room for a second without him chasing after me like a greyhound. We recently had another appointment with an orthoptist. I didn't fully understand why but he explained all about the tests and findings and we were very happy to discover that he doesn't need glasses, his vision is very good, his tests were all normal and there is no reason at the moment why, he couldn't drive one day. Over the moon doesn't cover it, although I'm only cautiously optimistic about the driving, I understand this is a condition which is very hard to gauge in babies.
I feel we need to raise awareness of the condition as most folk don't know what it is and even the professionals that do don't fully understand it therefore advances over the years from when my dad was diagnosed have been few and far between.
The condition does not affect personality, let me tell you, anyone that knows Archie will tell you that he is very happy, very outgoing and loves to be the centre of attention... long may it continue!
For more information on nystagmus please visit www.nystagmusnet.org.
I was unaware that I had a family history of nystagmus. I knew my dad had poor eyesight and that his eyes moved a bit but, as I'd grown up with it, to me it was completely normal. Ok, my dad couldn't drive because of it but again, because I grew up with it, I never gave it any thought.
After my son was born and we got his reflux under control we settled down to family life. I began to notice Archie's eyes moving around at about four weeks but, thinking he was just very inquisitive, I left it. Then folk started to point it out and ask if it was normal, well, now you come to mention it I'm not sure. Away I went to Google and read about nystagmus, still not making the connection to my dad. We made an immediate doctor’s appointment and unfortunately, although the doctor had heard of the condition, she was clueless as to how to proceed and even asked what I'd discovered on Google!
We were made to leave the room while she called the hospital to speak to a specialist. This was making me very nervous indeed as, being in the medical profession myself, I know this means they're quite worried. We were called back in and informed we'd be seeing a consultant at the children’s hospital within three weeks. She couldn't answer any of my questions so I went home and informed my family via text message as I didn't want to speak to anyone. It was now that my dad called and told me about his condition. I was totally shocked but relieved as he lives a perfectly normal life and you wouldn't know he had it. Although, now knowing this was the reason my dad couldn't drive, I looked into it again and discovered that a high percentage of sufferers cannot drive. Coming from a family that is heavily into motorsport and having a dad that was a professional rally driver and world champion I thought this may hit Archie very hard when he grows up so I made the decision there and then to tell him from an early age should that be the case.
At our first appointment we saw the consultant and he immediately asked if he could video the eye oscillation as they don't see that many babies with such a pronounced movement. I agreed. As soon as the camera came out Archie started smiling and it broke my heart as he was unaware of what it was for. He had an eye drop test and a whole lot of others that I can’t remember but the general consensus was that he would have to undergo a MRI scan to check there was nothing sinister going on in his brain. I immediately knew from my work that this would require a general anaesthetic. Not my ideal situation but if it meant getting a diagnosis and possibly a treatment I would cope. He was also to have a light test to determine the wiring of his retina to the brain.
The day of the light test we went in and I was, as usual, anxious with Archie taking it all in his stride. We were straight into the room and I sat on a chair with him on my knee while electrodes were attached to his head. They don't deliver a shock by the way, they just measure the brain waves. He loved the wires hanging off them so I had to keep him occupied so he didn't wreck them. Then the lights came on and he was in awe! He loves lights, so much so that he tried to pull the lamp closer to him and broke it, yes my baby is freakishly strong! At the end of the test the lady conducting them said all was normal. Excellent!
Next test was the dreaded MRI. We arrived in the morning with a starved child, not fun. We stuck him in the cot provided and proceeded to entertain him to keep his mind off the rumbly tummy. He loved the attention. I found out we were first on the list with him being the youngest and we were sent for on time. We made our way down the twisting maze to the MRI anaesthetic room and I discovered I wasn't as anxious as I expected. Upon entering the room the anaesthetist wasted no time, gave him the oxygen and gassed him down with no messing, I couldn't help but laugh as Archie tried to eat the anaesthetic tubing. Hungry boy! My other half, Barry, was very obviously shocked I didn't come out in tears, as was I as I fully expected it. We had time for lunch then returned to pick him up. He didn't cry, he just went straight back to sleep then devoured a bottle and a full jar of mango when we got back to the ward. We were allowed home pretty fast.
We heard nothing for ages from the hospital but were assured that if there was anything untoward they would have picked it up immediately. So I continued with the visual stimulation and discovered there is nothing wrong with his eyesight as I can't leave the room for a second without him chasing after me like a greyhound. We recently had another appointment with an orthoptist. I didn't fully understand why but he explained all about the tests and findings and we were very happy to discover that he doesn't need glasses, his vision is very good, his tests were all normal and there is no reason at the moment why, he couldn't drive one day. Over the moon doesn't cover it, although I'm only cautiously optimistic about the driving, I understand this is a condition which is very hard to gauge in babies.
I feel we need to raise awareness of the condition as most folk don't know what it is and even the professionals that do don't fully understand it therefore advances over the years from when my dad was diagnosed have been few and far between.
The condition does not affect personality, let me tell you, anyone that knows Archie will tell you that he is very happy, very outgoing and loves to be the centre of attention... long may it continue!
For more information on nystagmus please visit www.nystagmusnet.org.
Thursday 3 November 2011
Dealing with postnatal depression - Rachel's story
After a very painful pregnancy my water broke at 5am at the very start of my 37th week. Of course it broke in bed, which I can say beyond all reasonable doubt, is a very soggy experience.
We made our way to hospital and our gorgeous 6lb 11oz boy, Archie, was born at 10.10pm by semi-emergency c-section. I was in awe, to be honest I didn't feel the overwhelming love at first, I felt like me but with a new person in my life. I couldn't take my eyes off him, I couldn't believe he came out of me and was convinced he couldn't fit back in there. Once we'd been in recovery for a few hours myself and Archie went up to the ward as the spinal anaesthetic had worn off sufficiently for the staff to assess my pain levels which were fine. Barry, my other half, came with us to see where we were going then it was lights out and me and baby left alone. What the hell do I do with this child?? If he cries I'm not allowed out of bed, then I need to figure out why he's crying.... how the hell do I change a nappy and how the hell am I producing food for him out of my less than ample bosom?
We made it through the first night intact. I had my breakfast and Archie had his, although breast feeding was starting to hurt a LOT and he never seemed full. I asked for help and the staff were fantastic with me but the ward was so busy they were limited with the time they could spend helping me. It's about now that I realised things were changing, I pulled the curtains round my bed as I didn't want to interact with folk. Anyone that knows me knows I love a bit of banter and to chat. Barry arrived and took charge of the nappies and cuddles and I was de-catheterised and despatched to the shower. Whilst I was in there a lady arrived to test Archie's hearing. When I came out I felt my first pangs of anxiety like I had never felt before, she couldn't conduct the test as he was hungry and kicking off, I was convinced he was deaf. What’s that about?
The next day things got really bad, my love for this baby was overwhelming and my mind was trying to tell me this was irrational as I'd only known him two days. The paediatrician came round to see him and asked me a perfectly innocuous question. Then the tears came. And I couldn't stop them nor could I understand why they were falling. I am not an emotional person, I am normally the one who, in awful medical situations, provides support and philosophical reasoning to colleagues, so this was alien to me. Thankfully the staff were used to this, told me it was the baby blues and didn't acknowledge it, which is the best thing they could have done. If they were nice to me I don't know what I would have done. It was my birthday too and I was slightly upset that no one noticed but Archie was the most important person in the world and it was something I would have to get used to!
Day 3 arrived and I was expecting to go home. Barry arrived, I came out the shower and made a joke that Archie was looking remarkably tanned. Then something in my (currently dormant) medical brain triggered - jaundice. I immediately got a midwife and she agreed, then took him off for a blood test, I couldn't handle seeing my baby boy bleeding and crying so Barry helped and I had a walk. When the results came back it was indeed jaundice and I was moved to a window bed to give him light to help combat it.
It didn't work, his billiruben levels got so high he had to go under the UV lamps in nothing but a nappy. We were moved again to a room on our own which was nice but didn't help how I was feeling. I was associating jaundice with the adult form and was convinced he was not long for this world. I was failing at breast feeding and if he wasn't on the breast I had to be on the milking machine. I felt like a dairy cow! After one very bad night I decided to quit breast feeding him, he'd had the collostrum and I couldn't cope, I wanted him to get well and that meant being under the lights as much as possible, feeding meant coming out. I felt so guilty stopping but as soon as he started on the bottle he became a lot more settled.
We got good news on our 7th day in hospital, Archie's levels had come right down and he was able to go home! I was terrified. I couldn't look after him on my own. I was constantly crying, constantly anxious and having some thoughts that I was trying to ignore.
After struggling through Barry returning to work, a diagnosis of reflux in Archie and two trips to the emergency doctors, I felt that I could try a night out with my best pal Katherine and Fiona. I didn't want a rowdy one but we had a good laugh and I called a halt to the night very early.
The next day things came to a head. I admitted to myself and Barry that I wasn't right, I was so anxious, watching Archie all the time, waking up all night trying to hear him breathing. I was terrified of cot death, couldn't watch or read anything with babies in danger, I had a strange phobia of the stairs and had to sit down coming down them with the baby and perhaps worst of all, I was having 'visions' of him getting leukaemia when he’s older and actually going through the grief. I was crying all day to the extent my eyes were red and swollen and I couldn't go out. I told my health visitor and was referred straight to my GP that day. He was wonderful. He made me explain everything despite me not being able to speak through tears and then made me fill in a questionnaire which I scored significantly high on. I was put on Citalopram, a drug that helps make you feel better. He said it would take two weeks to work but within two days I was tear free and feeling more like me again, I found I could cope with Archie better and was beginning to have a laugh again.
Since then I have returned twice, the first time I was slipping back down into the black hole again and had my dose increased. The second time I was out walking with Archie and became convinced every car had a gunman in it and was planning on jumping on the pram the next time a car came along. I knew this was very wrong, I knew it stemmed from treating victims of the Cumbrian gunman a year before but I still don't know why it set off like that. It was now that my dose was increased to the maximum and I have since felt perfect, except when I forgot my pills for five days and was wondering why I was having dark thoughts again. Numpty that I am!
I will now keep a weekly blog about living with it as the time is drawing nearer that I will be weaned off the pills and I'm not looking forward to it to be honest.
We made our way to hospital and our gorgeous 6lb 11oz boy, Archie, was born at 10.10pm by semi-emergency c-section. I was in awe, to be honest I didn't feel the overwhelming love at first, I felt like me but with a new person in my life. I couldn't take my eyes off him, I couldn't believe he came out of me and was convinced he couldn't fit back in there. Once we'd been in recovery for a few hours myself and Archie went up to the ward as the spinal anaesthetic had worn off sufficiently for the staff to assess my pain levels which were fine. Barry, my other half, came with us to see where we were going then it was lights out and me and baby left alone. What the hell do I do with this child?? If he cries I'm not allowed out of bed, then I need to figure out why he's crying.... how the hell do I change a nappy and how the hell am I producing food for him out of my less than ample bosom?
We made it through the first night intact. I had my breakfast and Archie had his, although breast feeding was starting to hurt a LOT and he never seemed full. I asked for help and the staff were fantastic with me but the ward was so busy they were limited with the time they could spend helping me. It's about now that I realised things were changing, I pulled the curtains round my bed as I didn't want to interact with folk. Anyone that knows me knows I love a bit of banter and to chat. Barry arrived and took charge of the nappies and cuddles and I was de-catheterised and despatched to the shower. Whilst I was in there a lady arrived to test Archie's hearing. When I came out I felt my first pangs of anxiety like I had never felt before, she couldn't conduct the test as he was hungry and kicking off, I was convinced he was deaf. What’s that about?
Day 3 arrived and I was expecting to go home. Barry arrived, I came out the shower and made a joke that Archie was looking remarkably tanned. Then something in my (currently dormant) medical brain triggered - jaundice. I immediately got a midwife and she agreed, then took him off for a blood test, I couldn't handle seeing my baby boy bleeding and crying so Barry helped and I had a walk. When the results came back it was indeed jaundice and I was moved to a window bed to give him light to help combat it.
It didn't work, his billiruben levels got so high he had to go under the UV lamps in nothing but a nappy. We were moved again to a room on our own which was nice but didn't help how I was feeling. I was associating jaundice with the adult form and was convinced he was not long for this world. I was failing at breast feeding and if he wasn't on the breast I had to be on the milking machine. I felt like a dairy cow! After one very bad night I decided to quit breast feeding him, he'd had the collostrum and I couldn't cope, I wanted him to get well and that meant being under the lights as much as possible, feeding meant coming out. I felt so guilty stopping but as soon as he started on the bottle he became a lot more settled.
We got good news on our 7th day in hospital, Archie's levels had come right down and he was able to go home! I was terrified. I couldn't look after him on my own. I was constantly crying, constantly anxious and having some thoughts that I was trying to ignore.
After struggling through Barry returning to work, a diagnosis of reflux in Archie and two trips to the emergency doctors, I felt that I could try a night out with my best pal Katherine and Fiona. I didn't want a rowdy one but we had a good laugh and I called a halt to the night very early.
The next day things came to a head. I admitted to myself and Barry that I wasn't right, I was so anxious, watching Archie all the time, waking up all night trying to hear him breathing. I was terrified of cot death, couldn't watch or read anything with babies in danger, I had a strange phobia of the stairs and had to sit down coming down them with the baby and perhaps worst of all, I was having 'visions' of him getting leukaemia when he’s older and actually going through the grief. I was crying all day to the extent my eyes were red and swollen and I couldn't go out. I told my health visitor and was referred straight to my GP that day. He was wonderful. He made me explain everything despite me not being able to speak through tears and then made me fill in a questionnaire which I scored significantly high on. I was put on Citalopram, a drug that helps make you feel better. He said it would take two weeks to work but within two days I was tear free and feeling more like me again, I found I could cope with Archie better and was beginning to have a laugh again.
Since then I have returned twice, the first time I was slipping back down into the black hole again and had my dose increased. The second time I was out walking with Archie and became convinced every car had a gunman in it and was planning on jumping on the pram the next time a car came along. I knew this was very wrong, I knew it stemmed from treating victims of the Cumbrian gunman a year before but I still don't know why it set off like that. It was now that my dose was increased to the maximum and I have since felt perfect, except when I forgot my pills for five days and was wondering why I was having dark thoughts again. Numpty that I am!
I will now keep a weekly blog about living with it as the time is drawing nearer that I will be weaned off the pills and I'm not looking forward to it to be honest.
Katherine's emotional roller coaster - Part 2
If you don't like needles, look away now!
*plot spoiler, there are no pics :)
Having found and examined the lump under ultrasound the next stage is to try and aspirate or drain the lump to see whether it is a cyst. This involves an injection of local anaesthetic to numb the area before another needle is inserted like I say to try and drain any fluid. By now I'd switched off to most things that were happening and instead was kicking myself for not having anyone with me. I hadn't told my dad as I hadn't expected any of this to happen. But now as much as I wanted him there I didn't want to have to tell him about the lump. As a family we've been through so much "crap" together. Losing loved ones way before their time. I wasn't thinking so much "why me" but that that poor man, my dad, shouldn't have to go through this kind of thing again. Yes I know it all seems a bit premature seen as how I had no clue what was going to be found. But believe me when I say that it was one of the most intense moments in my life. I couldn't calm myself down, the nurse who assisted the Dr. again was so patient and reassuring. They are a great team at the RLI.
The lump wasn't a cyst. God damn it! As this lump wasn't expected by any of the team members, before anything else was done I had to wait to see one of the medical team. In this case it was Dr Law. I was to go back to a waiting area again before I could see her. The nurse asked if I wanted to phone someone to come and be with me. My heart wanted so badly to phone my dad but I just couldn't do that yet. Plus he was working and I didn't want to tell him this at work (he works at RLI and yes he has told me off for being so daft). My best mate Rachel lives in Aberdeen so obviously not an option. I texted and phoned my mate Ashia who was working in theatre and also Pauline to tell her what was going on. Again I was sobbing so much. In the meantime the great British cure all, a cup of tea had materialised before me. I don't think I drank any of it though.
Thoughts swirled and raced round my head, "what if?" "how am I going to tell my dad?" even worse "how am I going to tell my daughter?" I was just emotionally drained and know that although these thoughts are only natural given the circumstances, it really was a bit too early to think like that. Having looked more into it I'm more aware of the fact most breast lumps are benign and it is only a teeny fraction that are found to be malignant.
My voice of reason (Ashia) had arrived and texted me to say she was in reception. To be fair it's all a blur as to what I & she said initially but she managed to calm me down and tried to make me think about all the positives regardless of results. Rachel was also texting me to reassure me and give me a reality check & "kick up the bum". Just what I needed.
Ashia came in with me to speak to Dr Law, she asked about the reason for my appointment and explained more about what had been seen first on the mammogram and then at the ultrasound scan. The lump was teeny, it couldn't be felt with a physical breast examination but due to its irregularity in shape she felt that I should have biopsies taken to rule out anything "sinister"! Ouch!!
I knew this was gonna be sore as by now after all the prodding and needle aspiration I was a bit tender already.
Off we traipsed back to the waiting area. Sigh!
I was knackered. I know by this time it was 11 o'clock (2 hours I'd been there now, cripes!!) the fire alarm tests made me and Ashia jump and then laugh. A sense of normality at last showing its face. Ashia received a text to say "a letter from Blackpool Victoria Hospital had been delivered that morning". As an added stresser to both our lives we were chasing jobs as we were finishing our University placements and, more importantly, our course the next day!! Geesh, this really had all happened at the wrong time for me. Ashia had been given an interview date for the following Tuesday, although fantastic I just thought (as I had applied too) how the hell am I gonna get through that interview amd I hope the results appointment doesn't clash with my interview time. Plus I had an interview at RLI theatres on the Thursday after result day so again I thought what if it's bad news and then I've to try and attend an interview with that on my mind. Obviously it could be great news and I'd be on top form for that joyous task?! Ha!!
My heart was racing now with the newly added tension.
Ashia again was great at distraction, she could have a job of it she's that good! Seriously! In no time at all she had me giggling away.
Another lady called my name and off I went to face the dreaded biopsy. Unfortunately I was to face this part alone. She explained what to expect and what the procedure entailed. They would also be placing a small metal marker clip next to the lump to enable them to find it under X-ray and scans if necessary in the future. Out came the boobs (again) and by now all embarrassment had been lost and I just listened to instructions given to me. I was to lay on my side whilst my right breast was "squashed" a la mammogram stylee in the X-ray machine. More local anaesthetic was injected and the exact point for the biopsy to be taken was marked. They prepared me for the CLICK noise that the biopsy needle makes as a sample is taken (5 samples are taken altogether). CLICK CLICK CLICK CLICK CLICK. The local anaesthetic worked a treat and I felt nothing at all. PHEW. At the end of the procedure I talked to the nurse and had explained that I might have an interview on the results day. She was great about it and told me not to worry just to phone once I knew and that they'd sort it for me. FAB. One less thing to think about. This was it the end of a very long and emotional appointment. Just the waiting game to play & decisions as to who I was gonna tell to be made......
*plot spoiler, there are no pics :)
Having found and examined the lump under ultrasound the next stage is to try and aspirate or drain the lump to see whether it is a cyst. This involves an injection of local anaesthetic to numb the area before another needle is inserted like I say to try and drain any fluid. By now I'd switched off to most things that were happening and instead was kicking myself for not having anyone with me. I hadn't told my dad as I hadn't expected any of this to happen. But now as much as I wanted him there I didn't want to have to tell him about the lump. As a family we've been through so much "crap" together. Losing loved ones way before their time. I wasn't thinking so much "why me" but that that poor man, my dad, shouldn't have to go through this kind of thing again. Yes I know it all seems a bit premature seen as how I had no clue what was going to be found. But believe me when I say that it was one of the most intense moments in my life. I couldn't calm myself down, the nurse who assisted the Dr. again was so patient and reassuring. They are a great team at the RLI.
The lump wasn't a cyst. God damn it! As this lump wasn't expected by any of the team members, before anything else was done I had to wait to see one of the medical team. In this case it was Dr Law. I was to go back to a waiting area again before I could see her. The nurse asked if I wanted to phone someone to come and be with me. My heart wanted so badly to phone my dad but I just couldn't do that yet. Plus he was working and I didn't want to tell him this at work (he works at RLI and yes he has told me off for being so daft). My best mate Rachel lives in Aberdeen so obviously not an option. I texted and phoned my mate Ashia who was working in theatre and also Pauline to tell her what was going on. Again I was sobbing so much. In the meantime the great British cure all, a cup of tea had materialised before me. I don't think I drank any of it though.
Thoughts swirled and raced round my head, "what if?" "how am I going to tell my dad?" even worse "how am I going to tell my daughter?" I was just emotionally drained and know that although these thoughts are only natural given the circumstances, it really was a bit too early to think like that. Having looked more into it I'm more aware of the fact most breast lumps are benign and it is only a teeny fraction that are found to be malignant.
My voice of reason (Ashia) had arrived and texted me to say she was in reception. To be fair it's all a blur as to what I & she said initially but she managed to calm me down and tried to make me think about all the positives regardless of results. Rachel was also texting me to reassure me and give me a reality check & "kick up the bum". Just what I needed.
Ashia came in with me to speak to Dr Law, she asked about the reason for my appointment and explained more about what had been seen first on the mammogram and then at the ultrasound scan. The lump was teeny, it couldn't be felt with a physical breast examination but due to its irregularity in shape she felt that I should have biopsies taken to rule out anything "sinister"! Ouch!!
I knew this was gonna be sore as by now after all the prodding and needle aspiration I was a bit tender already.
Off we traipsed back to the waiting area. Sigh!
I was knackered. I know by this time it was 11 o'clock (2 hours I'd been there now, cripes!!) the fire alarm tests made me and Ashia jump and then laugh. A sense of normality at last showing its face. Ashia received a text to say "a letter from Blackpool Victoria Hospital had been delivered that morning". As an added stresser to both our lives we were chasing jobs as we were finishing our University placements and, more importantly, our course the next day!! Geesh, this really had all happened at the wrong time for me. Ashia had been given an interview date for the following Tuesday, although fantastic I just thought (as I had applied too) how the hell am I gonna get through that interview amd I hope the results appointment doesn't clash with my interview time. Plus I had an interview at RLI theatres on the Thursday after result day so again I thought what if it's bad news and then I've to try and attend an interview with that on my mind. Obviously it could be great news and I'd be on top form for that joyous task?! Ha!!
My heart was racing now with the newly added tension.
Ashia again was great at distraction, she could have a job of it she's that good! Seriously! In no time at all she had me giggling away.
Another lady called my name and off I went to face the dreaded biopsy. Unfortunately I was to face this part alone. She explained what to expect and what the procedure entailed. They would also be placing a small metal marker clip next to the lump to enable them to find it under X-ray and scans if necessary in the future. Out came the boobs (again) and by now all embarrassment had been lost and I just listened to instructions given to me. I was to lay on my side whilst my right breast was "squashed" a la mammogram stylee in the X-ray machine. More local anaesthetic was injected and the exact point for the biopsy to be taken was marked. They prepared me for the CLICK noise that the biopsy needle makes as a sample is taken (5 samples are taken altogether). CLICK CLICK CLICK CLICK CLICK. The local anaesthetic worked a treat and I felt nothing at all. PHEW. At the end of the procedure I talked to the nurse and had explained that I might have an interview on the results day. She was great about it and told me not to worry just to phone once I knew and that they'd sort it for me. FAB. One less thing to think about. This was it the end of a very long and emotional appointment. Just the waiting game to play & decisions as to who I was gonna tell to be made......
Tuesday 1 November 2011
Katherine's emotional roller coaster - Part 1
10th August 2011 was the date I started on my emotional roller coaster. But before all that a brief history:
Having had pains in my breasts for quite a long while I decided an appointment with my doc was needed. Also as I had no clue how to check my breasts for lumps properly and having "lumpy" boobs I wasn't really sure if mine were normal or not. So I thought I'd ask her to show me the right way to do it.
Dr Duncan was great, she assured me mine were normal and that she felt the pain was just duct pains and again quite normal. She asked to see me again in a month to see if the pain was related to menstrual changes that occur in the breast, she also recommended evening primrose oil & off I went.
Having reassured me she wasn't concerned with the symptoms I presented with I felt quite relaxed about the whole thing. A month later I saw her again and still having the intermittent pains she felt a consult at Royal Lancaster Infirmary’s (RLI) breast clinic should be the next step. Again she reassured me everything was fine and that this was in no way an urgent appointment.
And so to 10th August 2011…
The only people I told about the appointment was my best friend Rachel, Ashia my good pal from Uni & Pauline my workplace co-ordinator in RLI operating theatres. I didn't see the need to tell anyone else as it was just a routine hospital appointment. As I sat in the breast clinic waiting room I realised I was the only person to have gone in alone. You get an enormous sense of the importance that clinic holds just sitting in the waiting room. The ladies and guys who go there essentially for tests that could change their lives forever. I sat quite distracted playing of all things Tiny Tower on my phone whilst I waited to be called through "Those Doors". I can remember sending messages to Rachel & Ashia saying "still waiting" as time creeped ever slowly onwards.
"Katherine Begg" the girl called. My heart skipped, it was my turn now! Regrettably I don't know the name of this lady but she explained that instead of speaking to Mr P first I would instead be having an X-ray and scan done first so all bases were covered before I went in.
Oh God the dreaded mammogram machine, I just thought "this is gonna hurt". To my surprise it didn't, the lady was really supportive throughout but I really did feel I was wasting their time. I hadn't got a breast lump, I only had these pains?! I got dressed and walked back to the reception for another wait for the next scan. A nurse called my name and took me through for an ultra sound scan of my breasts, introduced me to the Doctor (again sadly his name escapes me but the way he chatted made me feel quite comfortable & supported).
Baring my boobs he proceeded to scan them and explained to me throughout what he was doing. I did feel quite sore with this one as he did apply some pressure as he explored the deeper tissue. Being the nosy sod I am I watched the monitor as he scanned my right breast. It brought back happy memories of my scans when pregnant. However all that changed when that black circular shadow appeared on the screen. And he started to click the markers on the screen. He was measuring it!! SHIT (my brain was racing! But I didn't have a lump? what is that?)
He started to scan the left breast but in no time at all he had finished and returned to the right breast. "Erm, hang on Mr how come you've finished the left one already & why have you gone back to that black spot?" were the thoughts racing through my head, I knew this wasn't right and I looked away from the screen now, tears welled up in my eyes. No matter how hard I tried to stop those damn tears they just kept rolling down my face!
"We've found a small mass in your breast" he explained gently. I just sobbed!!
Having had pains in my breasts for quite a long while I decided an appointment with my doc was needed. Also as I had no clue how to check my breasts for lumps properly and having "lumpy" boobs I wasn't really sure if mine were normal or not. So I thought I'd ask her to show me the right way to do it.
Dr Duncan was great, she assured me mine were normal and that she felt the pain was just duct pains and again quite normal. She asked to see me again in a month to see if the pain was related to menstrual changes that occur in the breast, she also recommended evening primrose oil & off I went.
Having reassured me she wasn't concerned with the symptoms I presented with I felt quite relaxed about the whole thing. A month later I saw her again and still having the intermittent pains she felt a consult at Royal Lancaster Infirmary’s (RLI) breast clinic should be the next step. Again she reassured me everything was fine and that this was in no way an urgent appointment.
And so to 10th August 2011…
The only people I told about the appointment was my best friend Rachel, Ashia my good pal from Uni & Pauline my workplace co-ordinator in RLI operating theatres. I didn't see the need to tell anyone else as it was just a routine hospital appointment. As I sat in the breast clinic waiting room I realised I was the only person to have gone in alone. You get an enormous sense of the importance that clinic holds just sitting in the waiting room. The ladies and guys who go there essentially for tests that could change their lives forever. I sat quite distracted playing of all things Tiny Tower on my phone whilst I waited to be called through "Those Doors". I can remember sending messages to Rachel & Ashia saying "still waiting" as time creeped ever slowly onwards.
"Katherine Begg" the girl called. My heart skipped, it was my turn now! Regrettably I don't know the name of this lady but she explained that instead of speaking to Mr P first I would instead be having an X-ray and scan done first so all bases were covered before I went in.
Oh God the dreaded mammogram machine, I just thought "this is gonna hurt". To my surprise it didn't, the lady was really supportive throughout but I really did feel I was wasting their time. I hadn't got a breast lump, I only had these pains?! I got dressed and walked back to the reception for another wait for the next scan. A nurse called my name and took me through for an ultra sound scan of my breasts, introduced me to the Doctor (again sadly his name escapes me but the way he chatted made me feel quite comfortable & supported).
Baring my boobs he proceeded to scan them and explained to me throughout what he was doing. I did feel quite sore with this one as he did apply some pressure as he explored the deeper tissue. Being the nosy sod I am I watched the monitor as he scanned my right breast. It brought back happy memories of my scans when pregnant. However all that changed when that black circular shadow appeared on the screen. And he started to click the markers on the screen. He was measuring it!! SHIT (my brain was racing! But I didn't have a lump? what is that?)
He started to scan the left breast but in no time at all he had finished and returned to the right breast. "Erm, hang on Mr how come you've finished the left one already & why have you gone back to that black spot?" were the thoughts racing through my head, I knew this wasn't right and I looked away from the screen now, tears welled up in my eyes. No matter how hard I tried to stop those damn tears they just kept rolling down my face!
"We've found a small mass in your breast" he explained gently. I just sobbed!!
Tuesday 25 October 2011
Rally2Raise fundraising enjoys successful start on Mull
The Rally2Raise project is aiming to raise funds for the Nystagmus Network, Cancer Research UK and the MS Society as well as raising awareness of post-natal depression. Team members Rachel Medich and Katherine Begg have had personal experience of all four of the causes and they will be running a series of fundraising activities in the remainder of 2011 and throughout 2012.
“I’d like to say thank you to all the people who bought cakes and cookies on Mull, we sold all the items we had made so it was an excellent start to the Rally2Raise campaign,” said Rachel. “All the causes are very important to Katherine and myself and we’ll be working as hard as we can to raise funds and awareness.”
Plans are currently being made for the next Rally2Raise event to be the Neil Howard Memorial Rally near York where it is hoped that Rachel will debut her Nissan Micra rally car. The team is also aiming to have a rally calendar on sale in November.
Please visit www.rally2raise.co.uk for more information on the project or to make a donation – in partnership with Virgin Money Giving online donations can now be accepted from which the causes will also receive gift aid. Please also visit the Facebook page at www.facebook.com/rally2raise.
Saturday 8 October 2011
New fundraising venture aims to rally to the cause
Aberdeen-based Rachel and her friend Katherine Begg will be organising the events and both have very personal experience of the causes which Rally2Raise will seek to help.
“We have chosen the causes as each one has affected us a great deal,” said Rachel. “I have had a torrid time with cancer recently, both personally and with friends. My son was born earlier this year with nystagmus, a not very well known eye disease for which there have been no medical advancements for many years.”
“Following the birth I suffered with severe post-natal depression for which I am still receiving treatment. Fortunately I recognised the symptons and got help but many women feel they have to keep it quiet and try and deal with it themselves and as a result become very ill. Rally2Raise is all about raising awareness of these causes and raising funds for the relevant charities.”
Katherine commented: “When Rachel told me about the concept for Rally2Raise I asked if we could also raise awareness and funds for MS. As a young carer I saw the affect MS had on the individual and also the family. I now know my mum had primary progressive MS, seeing my mum and best friend deteriorate over the years she was alive was the hardest thing to comprehend. Yet through it all she remained strong, kept her humour and remained true to her faith. All in all an inspirational figure for me, my brother and father who cared for her tirelessly and devotedly until she passed away in 1992.”
“I have close family members who have died from cancer. Very recently a lump was found in my breast after a mammogram test and I felt the fear of awaiting to know my "fate", planning what I would do if I had to tell my daughter. I was more terrified for my daughter and how it would affect her than anything else. The cells caught were benign, it was a relief but it also made me realise what others must go through too.”
“If Rally2Raise can help raise awareness and funds for all the causes we have chosen then I feel that I, in some way, have repaid all those who have helped me over the years, especially coping with the loss of my mum.”
The first Rally2Raise event will take place at the Mull Rally where Rachel and Katherine will be selling homemade cakes and cookies during the recce week and at the event itself – look out for them on the stages! After that Rachel is hoping to make her debut as a rally driver at the Neil Howard Memorial Rally in her recently acquired ex-Becky Kirvan Nissan Micra.
For more information on Rally2Raise please visit www.rally2raise.co.uk.
Subscribe to:
Posts (Atom)