Hi all!
I went back last week for my pre appointment blood test. Apart from being told off for putting my coffee cup on her table, it was rather unexciting and I hardly even felt the needle going in. Win.
As I turned up for my appointment to see the haematologist, for the first time in a very long time, I felt a bit nervous. I had no reason to. I hadn't felt any different to normal. Was a bit strange. I always request to see the same doctor every time as he knows me the best and was in charge of all my treatment. Half an hour after my scheduled appointment, he came out the office and announced that all those waiting to see him would be delayed. In my eyes, that only meant one thing. That either I, or someone else before me was receiving bad news and having an extended appointment. That made the nerves even greater.
An hour later after scheduled, he called my name. As I took a seat, we went through the usual questions, what I was up to at the moment, how I'd been feeling, any symptoms etc. He told me that my bloods were completely normal and was rather unremarkable as far as symptoms were concerned. He went on to explain, that because of the way I handled the chemo, the aggressive chemo and the transplant, that chances of reoccurrence fall due to having handled it relatively well. That was great news.
He also went on to say, that either from the next appointment, or the one after that, I could be completely discharged! This is the only context I ever like hearing the word Discharge. I couldn't have hoped to hear anything better! However, when he did say that, I did feel slightly sad at the fact I would never be back there. It has been such a major part of my life for the last four years, so if and when I eventually get discharged from his care, it will be very strange and the whole saga will officially be behind me!
Every year that has passed, I still can't get over the fact that all this happened to me. I still think a lot about everything that I went through, from diagnosis, treatment and now remission. The whole story still seems so surreal!
Next stage is to carry on as normal until I go back to see him again next Summer!
Wednesday 30 September 2015
Monday 7 September 2015
Pre Cancerversary Update
Hi all! My sincere apologies that it has taken me this long to update my blog. I can't think of a genuine excuse as to why, but I thought this would be a good time as I am now approaching four years post diagnosis!!
In my last post, it was the day before I was due to "go under the knife", used in the loosest possible way, to have the collagen cross linking procedure. As mentioned, it wasn't in order to fix my eyesight, which is what most laser surgery entails, but merely to prevent it from getting worse. On the day I was naturally quite nervous. Not as nervous as I had been for previous procedures, but a different kind of nervous. This was one of the first surgeries, where I would be wide awake. That was the scary part. When you have a general anaesthetic, you go into a room, are either gassed or have an IV anaesthetic and the next thing you know, you are awake again, completely clueless as to what has happened to you in the last couple of hours.
For this procedure, I was wide awake, talking to the surgeon as he was operating in my eye. My eye was taped open, which was very uncomfortable and I was given anaesthetic in the form of eye drops and as I lay there talking to the surgeon, I could smell burning. This was the laser in my eye, doing whatever it was meant to be doing. I wasn't expecting to be able to smell the burning and that was, of course, bizarre.
I can't really describe what the rest of the procedure was like without wanting to throw up a little. There was poking and prodding in my eye and the whole thing only lasted about 20 minutes! He put in a "bandage" contact lens which was meant to stay in for about 3 weeks but it came out after about a week after I rubbed my eye... I was sent home with a massive bag of eye drops, four different kinds which all did different things and obviously had to be put in at different times of the day for the next month. The first day was very uncomfortable and the light very sensitive, but after about 24 hours, it all settled and I carried on with the drops.
The surgeon had mentioned the potential for getting glasses, which didn't phase me. He did say wait a couple of months for it to heal, as it is a slow procedure. A couple of months later, I am now a full time glasses wearer, albeit mainly for my left eye.
My next haematology appointment is at the end of this month, so no doubt will have another update then! This one will hopefully not come 6 months late!
Until then... Peace Out!
In my last post, it was the day before I was due to "go under the knife", used in the loosest possible way, to have the collagen cross linking procedure. As mentioned, it wasn't in order to fix my eyesight, which is what most laser surgery entails, but merely to prevent it from getting worse. On the day I was naturally quite nervous. Not as nervous as I had been for previous procedures, but a different kind of nervous. This was one of the first surgeries, where I would be wide awake. That was the scary part. When you have a general anaesthetic, you go into a room, are either gassed or have an IV anaesthetic and the next thing you know, you are awake again, completely clueless as to what has happened to you in the last couple of hours.
For this procedure, I was wide awake, talking to the surgeon as he was operating in my eye. My eye was taped open, which was very uncomfortable and I was given anaesthetic in the form of eye drops and as I lay there talking to the surgeon, I could smell burning. This was the laser in my eye, doing whatever it was meant to be doing. I wasn't expecting to be able to smell the burning and that was, of course, bizarre.
I can't really describe what the rest of the procedure was like without wanting to throw up a little. There was poking and prodding in my eye and the whole thing only lasted about 20 minutes! He put in a "bandage" contact lens which was meant to stay in for about 3 weeks but it came out after about a week after I rubbed my eye... I was sent home with a massive bag of eye drops, four different kinds which all did different things and obviously had to be put in at different times of the day for the next month. The first day was very uncomfortable and the light very sensitive, but after about 24 hours, it all settled and I carried on with the drops.
The surgeon had mentioned the potential for getting glasses, which didn't phase me. He did say wait a couple of months for it to heal, as it is a slow procedure. A couple of months later, I am now a full time glasses wearer, albeit mainly for my left eye.
My next haematology appointment is at the end of this month, so no doubt will have another update then! This one will hopefully not come 6 months late!
Until then... Peace Out!
Sunday 1 February 2015
Lasers and and update
Last week I went back from my 6 monthly check up with my haematologist. After waiting for over an hour to see him (which is quite short!) we got called in. I had had my blood test the week before which was quick and painless (thankfully!) He had a look at my results and was very happy. Last time I had tingling in my fingers which we put down to nerve damage in my arm from the way I lean on my desk at work, which was resolved with a cushion... If only everything had been that easy! We had our usual chats about any symptoms I may have had, which I didn't and he then had a feel around my neck and under my arms for any lumps. I was lump free! Always a relief! He went on to say how from then on, my appointments would then be annually, rather than 6 monthly. That was fantastic to hear! I will be going back in 10 months however, as my parents didn't want to wait that long... Not to worry!
That's all on the cancer and haematology front!
In previous blogs I've mentioned my eyes and the condition which they discovered post shingles, Keretaconus. Very easy to remember this one as it is pronounced like everyone's favourite member of Atomic Kitten and Queen of Iceland adverts, Kerry Katona. This is where the cornea is changing shape and is causing blurred vision in my left eye. They will be fixing this tomorrow at Moorfields Eye Hospital in London with a procedure called Collagen Cross linking with Laser PTK. I've been telling people it's sort of like laser eye surgery (as there is a laser involved) except it is a condition that can't be fixed, but only prevented from getting worse. It is surgery and there will be eye drop anaesthetic, bright lights and a load of other fun things... The doctor said it will be very uncomfortable afterwards and I'm likely to be very sensitive to the light. Thank god they're only doing it in one eye!
I've been asked numerous times whether I'm nervous or scared. And to be honest. I'm not. Having been through everything I've been through, this doesn't seem anywhere near as scary in comparison! For one, there'll be no needles! Which in my eyes (pun) is always a winner! A bone marrow aspiration with a 12 inch needle in my hip, chemo and a stem cell transplant can't really be trumped in terms of scary procedures! The fact that I hopefully won't go blind is also a plus!
The eye surgery is scheduled for tomorrow, so I'll update again soon, albeit through my good eye :)
That's all on the cancer and haematology front!
In previous blogs I've mentioned my eyes and the condition which they discovered post shingles, Keretaconus. Very easy to remember this one as it is pronounced like everyone's favourite member of Atomic Kitten and Queen of Iceland adverts, Kerry Katona. This is where the cornea is changing shape and is causing blurred vision in my left eye. They will be fixing this tomorrow at Moorfields Eye Hospital in London with a procedure called Collagen Cross linking with Laser PTK. I've been telling people it's sort of like laser eye surgery (as there is a laser involved) except it is a condition that can't be fixed, but only prevented from getting worse. It is surgery and there will be eye drop anaesthetic, bright lights and a load of other fun things... The doctor said it will be very uncomfortable afterwards and I'm likely to be very sensitive to the light. Thank god they're only doing it in one eye!
I've been asked numerous times whether I'm nervous or scared. And to be honest. I'm not. Having been through everything I've been through, this doesn't seem anywhere near as scary in comparison! For one, there'll be no needles! Which in my eyes (pun) is always a winner! A bone marrow aspiration with a 12 inch needle in my hip, chemo and a stem cell transplant can't really be trumped in terms of scary procedures! The fact that I hopefully won't go blind is also a plus!
The eye surgery is scheduled for tomorrow, so I'll update again soon, albeit through my good eye :)
Sunday 28 September 2014
3 years post diagnosis and eyes
Today is the day! Three years ago exactly since I heard those dreaded words and my life changed forever. Although 3 years seems like quite a long time ago, everything that happened is still so clear and vivid in my mind. I still look back and can't believe that it all happened. The 6 months of uncertainty and not feeling like I had control of my life leading up to diagnosis day were terrifying. You know something is wrong. You just don't know what it is or how this will effect your life. The fact it took so long to diagnose was the hardest stage. Hearing the conclusion gives you a reason and hearing about the treatment and battling through it is the solution.
Three years on I've learnt so much about myself and have become a better person because of it. Seeing death's door makes you realise how important it is to take advantage of everything the world has to offer. Yes there may be some blips or hiccups along the way, but life is short and you can't take it for granted. I know I had it relatively easy in comparison to some people going through cancer treatment and there are occasional feelings of guilt.I know there shouldn't be because everyone responds so differently to their own treatment, but these feelings are unavoidable.
Now for an update... A few weeks ago I went back to the Eye Consultant at Moorefields, who last year had told me to come back in year just to see if things had changed. After lots of tests and eye drops, he concluded that the Keratoconus in my left eye had worsened since the last appointment as had the vision in my right eye and he recommended I see another specialist who performs the treatment used to prevent it from getting any worse. That appointment is next week, so I will update again then. The treatment is called Collagen Cross-Linking and involves lots of special eye drops and bright lights... Something to look forward to! After the appointment I felt very dizzy and light headed and thought I was going to throw up because all the eye drops had distorted my vision and made the light seem very sensitive.I did, luckily, manage to make it back to work in one piece!
Three years on I've learnt so much about myself and have become a better person because of it. Seeing death's door makes you realise how important it is to take advantage of everything the world has to offer. Yes there may be some blips or hiccups along the way, but life is short and you can't take it for granted. I know I had it relatively easy in comparison to some people going through cancer treatment and there are occasional feelings of guilt.I know there shouldn't be because everyone responds so differently to their own treatment, but these feelings are unavoidable.
Now for an update... A few weeks ago I went back to the Eye Consultant at Moorefields, who last year had told me to come back in year just to see if things had changed. After lots of tests and eye drops, he concluded that the Keratoconus in my left eye had worsened since the last appointment as had the vision in my right eye and he recommended I see another specialist who performs the treatment used to prevent it from getting any worse. That appointment is next week, so I will update again then. The treatment is called Collagen Cross-Linking and involves lots of special eye drops and bright lights... Something to look forward to! After the appointment I felt very dizzy and light headed and thought I was going to throw up because all the eye drops had distorted my vision and made the light seem very sensitive.I did, luckily, manage to make it back to work in one piece!
Sunday 20 July 2014
Pins and Needles and update!
Hi all!
Sorry it's been a while since my last post! Been very busy but have now sat down to write!
Here's a quick medical update...
About two months ago, I noticed a tingle in my left hand. Not thinking anything of it, I naturally ignored it. I noticed that it was still there, some days, then some weeks later. It felt like post pins and needles, where you get to the numb stage when it is coming to an end... Weird huh?
I asked a couple of people their thoughts and didn't really get anything. I eventually got an appointment at the GP. She knew my medical past and she said that the most likely cause is bruising to the nerve from when I lean on my elbow at work, which is sending tingles to my hand. Being over cautious, so also wanted to send me for a blood test to rule out other potential options. I tried to book one and, of course, it was a really long wait, and I would be seeing my haematologist before I could get a blood test at the GP.
I took the new blood form, along with my normal one to my pre consultation blood test. After some initial confusion from the phlebotomist, she took my blood, filling up 6 test tubes. The blood test felt more painful than normal. I felt very brave.
A week later, I was back in the waiting room, the same waiting room we waiting nearly 3 years ago to find out the dreaded news. The clinic was heaving. I always ask to see my doctor, rather than one of the other doctors in the clinic. He knows me very well. After an hour and a half delay (which is quite short in comparison to past appointments) I was eventually called in and the nerves kicked in. In the past, apart from when I was initially diagnosed, I had felt a bit nervous! Perhaps because of the results of the extra blood test... Who knows?!
It had been 6 months since my last appointment with my consultant and we had a short catch up. He informed me that all my bloods looked good and questioned why I had all the extra tests when he hadn't requested them. I explained the numb feeling in my hand and he assured me that it was nothing to do with the cancer or the treatment. He agreed with the GP that it was likely some sort of nerve damage from the way I lean on my desk at work. He suggested straightening out my arm and not leaning on my elbow... I shall try, but it's very comfy that way! If it persisted, he suggested getting referred to a neurologist. After that, he had his normal feel around for lumps around my neck, under-arms and groin. He couldn't feel anything, which is always a relief!
He was happy! At the next appointment, which is now 6 months away, I will be almost 3 years post transplant. Assuming nothing crops up, from then on my appointments will be annual, as apposed to every 6 months. That was the best news I could have hoped for! Full of relief, I headed back to work!
Sorry it's been a while since my last post! Been very busy but have now sat down to write!
Here's a quick medical update...
About two months ago, I noticed a tingle in my left hand. Not thinking anything of it, I naturally ignored it. I noticed that it was still there, some days, then some weeks later. It felt like post pins and needles, where you get to the numb stage when it is coming to an end... Weird huh?
I asked a couple of people their thoughts and didn't really get anything. I eventually got an appointment at the GP. She knew my medical past and she said that the most likely cause is bruising to the nerve from when I lean on my elbow at work, which is sending tingles to my hand. Being over cautious, so also wanted to send me for a blood test to rule out other potential options. I tried to book one and, of course, it was a really long wait, and I would be seeing my haematologist before I could get a blood test at the GP.
I took the new blood form, along with my normal one to my pre consultation blood test. After some initial confusion from the phlebotomist, she took my blood, filling up 6 test tubes. The blood test felt more painful than normal. I felt very brave.
A week later, I was back in the waiting room, the same waiting room we waiting nearly 3 years ago to find out the dreaded news. The clinic was heaving. I always ask to see my doctor, rather than one of the other doctors in the clinic. He knows me very well. After an hour and a half delay (which is quite short in comparison to past appointments) I was eventually called in and the nerves kicked in. In the past, apart from when I was initially diagnosed, I had felt a bit nervous! Perhaps because of the results of the extra blood test... Who knows?!
It had been 6 months since my last appointment with my consultant and we had a short catch up. He informed me that all my bloods looked good and questioned why I had all the extra tests when he hadn't requested them. I explained the numb feeling in my hand and he assured me that it was nothing to do with the cancer or the treatment. He agreed with the GP that it was likely some sort of nerve damage from the way I lean on my desk at work. He suggested straightening out my arm and not leaning on my elbow... I shall try, but it's very comfy that way! If it persisted, he suggested getting referred to a neurologist. After that, he had his normal feel around for lumps around my neck, under-arms and groin. He couldn't feel anything, which is always a relief!
He was happy! At the next appointment, which is now 6 months away, I will be almost 3 years post transplant. Assuming nothing crops up, from then on my appointments will be annual, as apposed to every 6 months. That was the best news I could have hoped for! Full of relief, I headed back to work!
Thursday 20 February 2014
Update and 2 years post transplant
In January I had a follow up appointment with my hematologist. After the blood test the week before, which was quite painful in comparison to normal, we were back in that same familiar waiting room. We were eventually called in and for the first time I was quite nervous. I have no idea why! We had the usual chat about what I was up to, whether I'd felt any symptoms etc. He was more than happy with my blood levels and he explained that they were at the levels for any normal person. Me? Normal? There's a first! He also had a feel around for lumps around my neck, stomach, under arms and groin and he couldn't find any, so that was a relief too! He also explained that now I was 2 years post transplant, the chances of it coming back were far less in this period in comparison to the 2 years straight after. That was also really great news! He now wants to see me every 6 months rather than 3, so that was the best news I could have hoped for!
Last week I also had a follow up with my rheumatologist, who I hadn't seen for at least 6 months. Despite her having been the original doctor who diagnosed me, I still enjoy going to see her. She was more then happy to sign me off and was delighted with the progress I had made. However, we rejected her offer, just in case because it is so much harder to get back into the system once you have been signed off.
This week was two years to the day since my transplant began. The transplant consisted of the removal of my stem cells then 5 days of high dose chemotherapy whilst staying in a hotel opposite the hospital until my immune system broke down, meaning I'd have to be admitted to hospital. I can still remember each day and each chemo session so clearly that it still bewilders me that it was 2 years ago!
Last week I also had a follow up with my rheumatologist, who I hadn't seen for at least 6 months. Despite her having been the original doctor who diagnosed me, I still enjoy going to see her. She was more then happy to sign me off and was delighted with the progress I had made. However, we rejected her offer, just in case because it is so much harder to get back into the system once you have been signed off.
This week was two years to the day since my transplant began. The transplant consisted of the removal of my stem cells then 5 days of high dose chemotherapy whilst staying in a hotel opposite the hospital until my immune system broke down, meaning I'd have to be admitted to hospital. I can still remember each day and each chemo session so clearly that it still bewilders me that it was 2 years ago!
Friday 4 October 2013
Two years post diagnosis!!
This is the second attempt at writing this blog post, as I managed to accidentally delete the other...
Last weekend it was exactly two years to the day I heard those dreaded words. The feelings on the day were somewhat bizarre. Although it should have naturally been a day of celebration, I sometimes can't help feeling a bit guilty as obviously not everyones cancer journeys end the same way. No one should ever have to be in the situation where they are told, point blank, that something horrible, dangerous, evil and probably life threatening may prevent them from achieving their dreams. Their aspirations. Things they've wanted from a child. Having now been through everything that I went through and come out the other end, life should now seem easy in comparison, hopefully! Although it was two years ago, it has gone so quickly. I remember so clearly everything that happened on the day. Getting the train back from Leeds, waiting in the waiting room to be called in, having my blood pressure checked and being told my pulse was quite high, being called in and then being given the news. All the actions and emotions are still so bold in my head, it is hard to get over. I genuinely can't believe that it was two years ago!
A few weeks ago, I had an appointment to see my haematologist. He mentioned that it was 18 months since my transplant. My dad and I both looked at eachother in amazement as we couldn't believe how long it had been! We had our usual chat, he said my bloods were looking good and I also mentioned to him, something that I hadn't mentioned to my parents, that I kept feeling a recurring pain in my armpits. He had a thorough feel around, but couldn't feel anything. That was lucky! I had also mentioned it to my rheumatologist who I had seen a few weeks previous and she believed it to be muscle folds and nothing I should be concerned about.
Other good news which came from that appointment, was that after my next appointment which will be in January, I no longer need to go every 3 months, but every 6 months :) That was great to hear, as the less concerned about me he is, the better.
Last weekend it was exactly two years to the day I heard those dreaded words. The feelings on the day were somewhat bizarre. Although it should have naturally been a day of celebration, I sometimes can't help feeling a bit guilty as obviously not everyones cancer journeys end the same way. No one should ever have to be in the situation where they are told, point blank, that something horrible, dangerous, evil and probably life threatening may prevent them from achieving their dreams. Their aspirations. Things they've wanted from a child. Having now been through everything that I went through and come out the other end, life should now seem easy in comparison, hopefully! Although it was two years ago, it has gone so quickly. I remember so clearly everything that happened on the day. Getting the train back from Leeds, waiting in the waiting room to be called in, having my blood pressure checked and being told my pulse was quite high, being called in and then being given the news. All the actions and emotions are still so bold in my head, it is hard to get over. I genuinely can't believe that it was two years ago!
A few weeks ago, I had an appointment to see my haematologist. He mentioned that it was 18 months since my transplant. My dad and I both looked at eachother in amazement as we couldn't believe how long it had been! We had our usual chat, he said my bloods were looking good and I also mentioned to him, something that I hadn't mentioned to my parents, that I kept feeling a recurring pain in my armpits. He had a thorough feel around, but couldn't feel anything. That was lucky! I had also mentioned it to my rheumatologist who I had seen a few weeks previous and she believed it to be muscle folds and nothing I should be concerned about.
Other good news which came from that appointment, was that after my next appointment which will be in January, I no longer need to go every 3 months, but every 6 months :) That was great to hear, as the less concerned about me he is, the better.
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