I'm upset. I shouldn't be at this point but I am. I had a phone call about a month ago asking me to go in to see my consultants second in command. It rocked me a bit, I wasn't expecting it, but the person on the phone said they were contacting everyone who had an outstanding colonoscopy appointment and I was one of them. I knew I was, it was due back in February but with NHS cuts and the huge backlog, I was told it would take longer.
I didn't know what to expect really. I hoped that I'd get there and would be told that because the MRI and CT scans were satisfactory back in February, no colonoscopy was needed. It didn't go that way at all.
The consultant told me that everyone was being seen who was waiting for a colonoscopy to assess whether one was actually needed. Oh good I thought, maybe I DO get a reprieve, before he went on to say that, in my case, I definitely needed one. I was disappointed. He said that, as I have been previously diagnosed with cancer, it had to be checked. I explained that I didn't manage to have the last colonoscopy due to the excruciating pain. I hoped this would mean he would book me in for a colonography instead. The prep is still needed for this and the procedure isn't great, but it's far better to cope with than a colonoscopy.
He checked through my records. He read through what he had written after my last colonoscopy. "You definitely won't be able to have a colonoscopy without being put under local anaesthetic" he said. "I have made a note that, the pain was so severe that I felt I would never be able to do a successful colonoscopy on you so you will need to go down to theatre and be knocked out". I've struggled with this all day since. Firstly, I'm terrified something will be found, of course I am, I've been here before. Secondly, I don't want to be knocked out (although not having the pain is a bonus) because this is like an operation in itself and I may well need to stay in hospital overnight. Not great, but I'm starting to get my head around it and I will have to do it whatever, so there is no point complaining. Apparently, if I was in England I could be given a great drug which would knock me out during a normal routine colonoscopy. No theatre, no sickness or feeling ill afterwards, just knocked our for 10 minutes and then home. NHS Wales do not offer this. I could have it done privately at a cost of £14,500. This is massive money and £12,000 more that a colonoscopy would generally cost so I can only assume the huge money is the cost of the wonderful drug. So that's not going to happen.
The dreaded Prep. I've had several now and I absolutely cannot face it, but I'll have to. The waiting around for the phone calls afterwards, I absolutely cannot face it, but I'll have to. The thought of being told I have cancer again, I absolutely cannot face it.. but again I will have to man up and do all of these things. It won't be easy.
Saturday, 20 October 2018
Monday, 15 October 2018
Friends Will Be Friends
I lost touch with my best friend. I don't know how it happened. We met when we moved to a village in the Cotswolds and she lived there with her husband. We hit it off right away and we had the most fabulous times together. Dawn and Frank moved out of the village after a few years but we stayed in touch for a while and then, sadly, it all sort of slid away. I'm not sure either of us fully know why we lost touch but as with all people who lose touch, time seems to move on and it feels harder and harder to actually make contact again. I missed having Dawn around to chat to when I got my diagnosis mainly because I knew she wouldn't let me down like other people had. The fact is that she never let me down, ever.
It was me who finally got in touch. I didn't even know if she would have the same phone number or if I still had it on my phone because with new phones and bad backups I'd lost a lot of stuff.
There was actually no way I could NOT have contacted her. While we were still texting each other, Dawn and Frank's grandson, Sam, got a brain tumour. It was shocking. He was only about 18 months old. I don't know how they coped with the shock of it all. I still don't know how they coped. When we lost touch I often wondered how Sam was doing. He had been doing well, but I knew the long term diagnosis wasn't great and I worried about them all from time to time.
I was on Facebook one day when it came up with 'people you might know' and one of those people was Dawn's daughter. I clicked in to see if I could find anything out about Sam and with only a little bit of scrolling I was stopped in my tracks. Sam had lost his battle in October the previous year. 3 months ago in fact. I was so upset. I spoke to Mark about it and he said I had to contact Dawn. I felt awkward, I didn't know if she would even want to speak to me after the long gap. For a few hours I couldn't get it off my mind. We were out in the car talking about Dawn and Frank and wondering just how awful things must be for them. I decided to text her. I found a number which I hoped would still be in use and I sent the text.
About half an hour later a text came back. Dawn told me what had happened, how Sam had been abroad for Proton Therapy, how they had raised £90,000 for him to go. The whole thing was so heartbreaking. It changed Dawn and Frank's life that's for sure. The biggest thing in all of this was that, I still loved my lovely friend. My heart broke for her and it didn't feel that we had lost touch at all. She sent lots of photos of beautiful Sam. He was gorgeous with or without hair. Over the next days we exchanged lots of texts and I caught up on all of Sam's short life. I cried all the time. Every text was painful. They had all been through so much, every type of hell imaginable. Sam had done very well after Proton Therapy. He actually went back to school and had a fairly normal life for 2 years and I have no doubt that his family hoped that it would last and he would continue to do well..but cancer being the bastard that it is came back. There can be no crueler cancer than one that takes a child. The pain of losing that beautiful boy will last forever. We talk about him often, Dawn and I. Mark and I talk about him too. He is our friend's grandson and he will always be a part of our lives.
So my tests this year took a very different turn because I had the support of Dawn. She text me the morning of my MRI and said I'm with you every step today. She told me to think of Sam having to go through the MRI scanner and said, if he can do it so can you. I had not been able to go through the first MRI the previous year and the second one I had to do on my belly so I didn't feel so claustrophobic. I was expecting this MRI to be the same (on my belly) but no.. when I got there they said they couldn't do it that way and I had to go through on my front. It freaked me out a bit but I thought of Dawn's words and I thought of Sam.. and between them, Sam and Dawn got me through the machine that day.
She hasn't let me down. I knew she wouldn't. She doesn't care if I moan about things, she moans with me. It's a proper friendship where we can say what we like, be annoyed about people, be happy, be sad, be angry. We love a gossip, what sort of friends would we be if we didn't! It doesn't matter what I say to Dawn, she has always got my back and I have always and forever got hers. Real friends do not come along very often in life, sometimes not at all so I cherish what I have. I'll never lose touch again.
It was me who finally got in touch. I didn't even know if she would have the same phone number or if I still had it on my phone because with new phones and bad backups I'd lost a lot of stuff.
There was actually no way I could NOT have contacted her. While we were still texting each other, Dawn and Frank's grandson, Sam, got a brain tumour. It was shocking. He was only about 18 months old. I don't know how they coped with the shock of it all. I still don't know how they coped. When we lost touch I often wondered how Sam was doing. He had been doing well, but I knew the long term diagnosis wasn't great and I worried about them all from time to time.
I was on Facebook one day when it came up with 'people you might know' and one of those people was Dawn's daughter. I clicked in to see if I could find anything out about Sam and with only a little bit of scrolling I was stopped in my tracks. Sam had lost his battle in October the previous year. 3 months ago in fact. I was so upset. I spoke to Mark about it and he said I had to contact Dawn. I felt awkward, I didn't know if she would even want to speak to me after the long gap. For a few hours I couldn't get it off my mind. We were out in the car talking about Dawn and Frank and wondering just how awful things must be for them. I decided to text her. I found a number which I hoped would still be in use and I sent the text.
About half an hour later a text came back. Dawn told me what had happened, how Sam had been abroad for Proton Therapy, how they had raised £90,000 for him to go. The whole thing was so heartbreaking. It changed Dawn and Frank's life that's for sure. The biggest thing in all of this was that, I still loved my lovely friend. My heart broke for her and it didn't feel that we had lost touch at all. She sent lots of photos of beautiful Sam. He was gorgeous with or without hair. Over the next days we exchanged lots of texts and I caught up on all of Sam's short life. I cried all the time. Every text was painful. They had all been through so much, every type of hell imaginable. Sam had done very well after Proton Therapy. He actually went back to school and had a fairly normal life for 2 years and I have no doubt that his family hoped that it would last and he would continue to do well..but cancer being the bastard that it is came back. There can be no crueler cancer than one that takes a child. The pain of losing that beautiful boy will last forever. We talk about him often, Dawn and I. Mark and I talk about him too. He is our friend's grandson and he will always be a part of our lives.
So my tests this year took a very different turn because I had the support of Dawn. She text me the morning of my MRI and said I'm with you every step today. She told me to think of Sam having to go through the MRI scanner and said, if he can do it so can you. I had not been able to go through the first MRI the previous year and the second one I had to do on my belly so I didn't feel so claustrophobic. I was expecting this MRI to be the same (on my belly) but no.. when I got there they said they couldn't do it that way and I had to go through on my front. It freaked me out a bit but I thought of Dawn's words and I thought of Sam.. and between them, Sam and Dawn got me through the machine that day.
She hasn't let me down. I knew she wouldn't. She doesn't care if I moan about things, she moans with me. It's a proper friendship where we can say what we like, be annoyed about people, be happy, be sad, be angry. We love a gossip, what sort of friends would we be if we didn't! It doesn't matter what I say to Dawn, she has always got my back and I have always and forever got hers. Real friends do not come along very often in life, sometimes not at all so I cherish what I have. I'll never lose touch again.
Heaven Knows I'm Miserable Now
I can't believe it's been over a year since I last posted to this blog. It's not that things haven't been happening in my life but it's been nice not be be 100% consumed by cancer, and blogging just brings it to the forefront again.
The worst thing has been trying to deal with severe anxiety (I know I've gone on about this before) which I really DO think was partly brought on by my cancer diagnosis.I feel bad even saying that because I know so far, I have been one of the lucky ones. I still go back to hospital every 6 months to see the cancer nurses and I have had further MRI and CT scans with more to come in February, but these are just checks at the moment. They are keeping an eye on everything. Does it make me feel better? I'm certainly in a better place than I was this time last year. Better? No. My life has changed. I'm frightened and anxious in equal measures. The anxiety started earlier this year when the scans and appointments started up again. Waiting for phone calls was just too much to cope with. I think it was because of how bad that wait had been last year and I just pre-empted everything. Those withheld calls started coming in where you know it's the hospital and dreading what they will say. I would't wish those feelings on anyone.
It started off quite well. I had the MRI and CT scan on the same day and then a week later I saw the cancer nurses. I was told that the CT scan results were back and they were clear so that was extremely good news. I was shown the computer screen where the MRI result would be and was told that had yet to come back but they said, had it come back, they would be able to tell me the results. I had a blood test that day to check for bowel cancer pointers. The following week the nurse rang me as promised and said that the blood test was fine - all good! I asked about the MRI scan and was told it had come back but hadn't been checked so they couldn't tell me anything. This threw me into a panic because the previous week I was told they COULD tell me so the next half an hour consisted of me having the worst sort of panic attack where I convinced myself that there was something serious on the MRI scan and that was the reason they were avoiding having a conversation with me. I rang the cancer nurse back and explained I was worried after being told they would tell me on the phone. Apparently the nurse I usually deal with wasn't there, it was Friday at 4PM and my consultant wasn't in the building. I would have to wait a week. By now I was really stressing. 10 minutes later the nurse rang back, said she had seen my consultant in the corridor and he had quickly checked my MRI and it was fine. I was of course relieved but it all seemed odd. The consultant wasn't in the building half an hour ago and now, in the middle of a corridor he had been able to assess my MRI scan? Whatever the reasons, I was glad to get the results.
The anxiety continued though. It was difficult to live a normal day and I didn't really know why. I was a cow during this time and I don't know how my husband put up with it because he was really the only person who fully knew about it and he bore the brunt of it. I DID tell a friend and a relative but both went missing as they had done when I got my original diagnosis. Lesson learned this time though. I won't be confiding in either again.
Back in December, my beloved Westie, Maisy, had to be put to sleep. She was 16. She had been with me through good and bad times and I felt had been my only friend at some points in my life. I loved her. Although I knew the end was close and she had not been well, it was still hard to deal with her loss and I took it very badly. Looking back, I think losing her was probably more the cause of my severe anxiety and the cancer checks just added to it all. I can honestly say a day has not gone by in that 10 months where I haven't thought about her and I could count on my one hand the days I haven't actually cried. It has been like losing a family member which of course, is exactly what is it. I will miss her until the day I die. It's been hard living without her but I won't be having another dog. I cannot replace her and wouldn't wish to. The one thing that I really couldn't deal with during my initial diagnosis was the thought of dying and leaving Maisy behind. She will be my last dog. However, the happiest time of my life was walking her for miles in the countryside. We had the best of times Maisy and me. I look back knowing she couldn't have had a better life than the one we gave her and I also know my life was much better for having her in it. Yes, I'm still devastated by her loss and it's been so hard dealing with it, but she deserves to be missed. She also deserves more than a paragraph in this blog, but it's upsetting me so much and I can't see through all the tears.
She will be running in those cornfields forever.
The worst thing has been trying to deal with severe anxiety (I know I've gone on about this before) which I really DO think was partly brought on by my cancer diagnosis.I feel bad even saying that because I know so far, I have been one of the lucky ones. I still go back to hospital every 6 months to see the cancer nurses and I have had further MRI and CT scans with more to come in February, but these are just checks at the moment. They are keeping an eye on everything. Does it make me feel better? I'm certainly in a better place than I was this time last year. Better? No. My life has changed. I'm frightened and anxious in equal measures. The anxiety started earlier this year when the scans and appointments started up again. Waiting for phone calls was just too much to cope with. I think it was because of how bad that wait had been last year and I just pre-empted everything. Those withheld calls started coming in where you know it's the hospital and dreading what they will say. I would't wish those feelings on anyone.
It started off quite well. I had the MRI and CT scan on the same day and then a week later I saw the cancer nurses. I was told that the CT scan results were back and they were clear so that was extremely good news. I was shown the computer screen where the MRI result would be and was told that had yet to come back but they said, had it come back, they would be able to tell me the results. I had a blood test that day to check for bowel cancer pointers. The following week the nurse rang me as promised and said that the blood test was fine - all good! I asked about the MRI scan and was told it had come back but hadn't been checked so they couldn't tell me anything. This threw me into a panic because the previous week I was told they COULD tell me so the next half an hour consisted of me having the worst sort of panic attack where I convinced myself that there was something serious on the MRI scan and that was the reason they were avoiding having a conversation with me. I rang the cancer nurse back and explained I was worried after being told they would tell me on the phone. Apparently the nurse I usually deal with wasn't there, it was Friday at 4PM and my consultant wasn't in the building. I would have to wait a week. By now I was really stressing. 10 minutes later the nurse rang back, said she had seen my consultant in the corridor and he had quickly checked my MRI and it was fine. I was of course relieved but it all seemed odd. The consultant wasn't in the building half an hour ago and now, in the middle of a corridor he had been able to assess my MRI scan? Whatever the reasons, I was glad to get the results.
The anxiety continued though. It was difficult to live a normal day and I didn't really know why. I was a cow during this time and I don't know how my husband put up with it because he was really the only person who fully knew about it and he bore the brunt of it. I DID tell a friend and a relative but both went missing as they had done when I got my original diagnosis. Lesson learned this time though. I won't be confiding in either again.
Back in December, my beloved Westie, Maisy, had to be put to sleep. She was 16. She had been with me through good and bad times and I felt had been my only friend at some points in my life. I loved her. Although I knew the end was close and she had not been well, it was still hard to deal with her loss and I took it very badly. Looking back, I think losing her was probably more the cause of my severe anxiety and the cancer checks just added to it all. I can honestly say a day has not gone by in that 10 months where I haven't thought about her and I could count on my one hand the days I haven't actually cried. It has been like losing a family member which of course, is exactly what is it. I will miss her until the day I die. It's been hard living without her but I won't be having another dog. I cannot replace her and wouldn't wish to. The one thing that I really couldn't deal with during my initial diagnosis was the thought of dying and leaving Maisy behind. She will be my last dog. However, the happiest time of my life was walking her for miles in the countryside. We had the best of times Maisy and me. I look back knowing she couldn't have had a better life than the one we gave her and I also know my life was much better for having her in it. Yes, I'm still devastated by her loss and it's been so hard dealing with it, but she deserves to be missed. She also deserves more than a paragraph in this blog, but it's upsetting me so much and I can't see through all the tears.
She will be running in those cornfields forever.
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