Wednesday 29 April 2015
Couple of updates
Update number one:
I saw the consultant yesterday. I was a bit nervous about this appointment. I'm not sure why, but I just felt nervous. All I could think was,"What if it's bad?"
Anyway, I get to the appointment and she tells me that the scans look about the same as they did last time, and if the people at the multi-disciplinary team meeting agree, I won't have to see the consultant again for another year! I think the MDT team meeting thing is just a formality as the consultant seems pretty positive. She said,"That will be nice to not see us for a while, won't it?" and I said,"Yes!" I mean no offence doctor, but yes, it will be lovely to not have to see you for a while!
Admittedly I was a little bit disappointed at first. I know I've said this before, but I'm always a little bit disappointed when they say something other than,"You're all clear!" Once I thought about it more, I realised that for now, it'll do. It'll be nice not to think about the next appointment for a while.
The consultant also pointed out that I have been making progress, it's just slow progress. She told me to think back to two years ago, and when I do that I see that she is right. In fact, two years ago I was still in hospital having had surgery. When I got out of hospital, I needed help with washing and bathing. I even needed help putting a jacket on! I'm still not 100%, but I'm managing to do some things myself.
Update number two:
So, back in October I was supposed to see a gynaecologist about the endometriosis thing (which, to be honest, has kind of been put on the back burner) I think I talked about this, but I'll say it anyway. When I got to the appointment, I handed in my letter and sat down to wait. After a while, a nurse came out to tell everyone that there would be a 40-minute delay on appointments. A few moments later another nurse comes out and tells us that there's still a 40-minute wait, but because of the amount of patients it would add up to a two-hour delay! She then said that people could reschedule if they wanted to, so I opted to do that (that nurse was very grateful!)
That situation put me off rescheduling, and anything to do with endometriosis got put on the back burner. However, one night back in January I got really intense abdominal cramps. I went to the hospital, and the nurse I saw her there made me an out-of-hours appointment. It was at 5.45 in the morning, and by 5 in the morning the cramps had subsided and I cancelled the appointment. So I never found out the cause of the cramps, but I suspected it was caused by this endometriosis and so I went back to my regular GP to get referred to a gynaecology unit again, as well as get stronger painkillers. (By the way, can you tell I'm trying really hard not to refer it as,"MY endometriosis"? I'm trying not to take ownership of it)
So, a week or two ago I received a choose and book referral letter, and the GP had written two possible hospitals on it. One was Yorkshire Clinic, and the other was the good old BRI. I'd heard good things about the Yorkshire Clinic, and the GP had written on my letter that the waiting list for that place was much shorter. When I spoke to a couple of friends about it, they recommended that particular place, so I decided to go for it. I mean, I wasn't exactly sure where the place is, but I decided to just book it and worry about the logistics later! I mean, Google would help me with finding the place, right?
So, for those not familiar, the NHS has a choose and book scheme which is...Well, it's fairly self-explanatory, isn't it? You go on the website, put some details in (reference number, year of birth, and the password they give you) then you can choose a hospital and book an appointment. However, trying to do it on my phone was a bit frustrating and I realised that doing it on a computer was a better idea. Just as I was about to do this, somebody from the BRI rang! She'd been looking through some files, and I guess she noticed that even though I had been logged into the system that day in October, it wasn't clear if I'd seen a doctor or not. I explained what had happened, she apologised for it, and said I could just leave it with her to sort it out! I know they weren't my first choice, but if someone from the BRI calls and offers to reschedule it, I'm not going to argue! Especially as that might lead to getting an appointment faster than if I would if I'd gone for the choose and book method.
Also, it's probably easier to go there, because I know where it is. Also, I think the endocrinologist would like to be able to liaise with the gynaecologist, so going to the BRI would make things easier. We all know what happens when two hospitals should be communicating with each other--they don't!
So they are the two positive things that happened in the past couple of days! If I didn't have a raging mouth ulcer right now, I'd eat some cake!
Friday 24 April 2015
Pacing
The topic of discussion with my therapist today! I explained that I'd found routine difficult because some days I'm just wiped. She had mentioned pacing in a previous session, so I wanted to find out more about it.
She showed me some information on it, and explained that sometimes people tend to do loads of activity one day, and then the next day they have to rest. Then they might go on like that during the week. I had been doing this very thing! Spending a day doing ALL THE THINGS and then needing a rest the next day. I had been thinking that that was the correct way of managing it. If have know I'm going to have a day out, I might spend the day before and the day after doing nothing, so I will have maximum energy for my day out. This is totally wrong though. I should focus on doing small amounts of activity with small amounts of rest. To be honest, there have been times where, if I've known I would be out in the evening, I'd rest during the day to conserve energy, but then I would still feel tired after my evening out.
So what I have to do is start small with my physical activities, stop when I feel tired, then mark down how long I lasted before I got tired. So, I might do some vacuuming, stop when I'm tired, and see that 15 minutes passed before I got tired. If I'm out with friends, and I get tired, I'll make a note of how long it took before I got tired. I'll record this over the course of a few days (both good days and bad days), then I'll work out the average time, and subtract a fifth from it. From that I will learn what a manageable amount of activity is for me. How long I can go before I get tired.
It's going to take time, but I think it's a good start. I was supposed to have just one more session with the therapist, but now that I'm starting with the pacing thing, she wants to extend it slightly to support me. So now I have two sessions left! I'm thankful for that, mostly because next week I see my consultant, and depending on what happens I might really need to see my therapist!
Wednesday 15 April 2015
Nourishing and depleting activities
This is something my therapist was talking to me about. We were talking about routine, and working out a schedule for me. She said that every time I do a depleting activity, I should follow it with a nourishing activity. For instance, a depleting activity could be a day at work. Then you might come home and watch a movie, which would be your nourishing activity.
While talking about this with her, I realised I couldn't call to mind many nourishing activities. However, my therapist had a list! The list included journalling, taking pictures, going on walks...Stuff like that.
Journalling was one of the activities that caught my eye. I did used to do journalling, and I really enjoyed it. I know I've got this blog, but for me journalling is a bit different. It's much free-form. When I blog I feel like I have to think about being cohesive and having a beginning, a middle, and an end. When I'm simply putting pen to paper I can write and write till my hand cramps up! Then I give my hand a quick shake and continue writing! You just can't beat it! So I did want to get back into it but I was slightly stuck on what to write. I've got plenty of notebooks but didn't know what to write in one of my many notebooks. Then last week someone on my Facebook newsfeed had posted some creative therapy journalling topics. I wrote nearly all the topics down in a notebook and I plan on working through them (I think the idea is to share them in a community type way but, I'd rather just take this as an exercise for myself. If you are interested by the way, here is the link: https://junquemail.wordpress.com/journal-prompts-creative-therapy/ )
Another thing I would like to try doing is colouring or doodling. Neither of those two things were on the list, but I've heard a lot of talk about it being a good way to de-stress. You can even get doodling and colouring books geared towards adults, but I really don't mind getting one which is for children. Colouring is colouring, and doodling is doodling, right? It'll have the same affect no matter what it is!
I know that I talk about starting new things and new hobbies a lot. Or I've set goals and haven't followed them through, but I think these new things are doable! Apparently I would like to de-stress, whilst keeping my mind engaged and expressing creativity, and also giving myself a cramp in my hand!
Next time I see my therapist, we're going to discuss pacing. I have struggled with getting the balance between taking part in activities and getting some rest. I'm getting better at it, but it used to be that I would either not do things through fear that it would wear me out, or I would really go for it and wear myself out! So it'll be good for somebody to show me how to pace myself and get the balance.
I would just like to feel some sense of purpose and usefulness, but do it without wearing myself out.
While talking about this with her, I realised I couldn't call to mind many nourishing activities. However, my therapist had a list! The list included journalling, taking pictures, going on walks...Stuff like that.
Journalling was one of the activities that caught my eye. I did used to do journalling, and I really enjoyed it. I know I've got this blog, but for me journalling is a bit different. It's much free-form. When I blog I feel like I have to think about being cohesive and having a beginning, a middle, and an end. When I'm simply putting pen to paper I can write and write till my hand cramps up! Then I give my hand a quick shake and continue writing! You just can't beat it! So I did want to get back into it but I was slightly stuck on what to write. I've got plenty of notebooks but didn't know what to write in one of my many notebooks. Then last week someone on my Facebook newsfeed had posted some creative therapy journalling topics. I wrote nearly all the topics down in a notebook and I plan on working through them (I think the idea is to share them in a community type way but, I'd rather just take this as an exercise for myself. If you are interested by the way, here is the link: https://junquemail.wordpress.com/journal-prompts-creative-therapy/ )
Another thing I would like to try doing is colouring or doodling. Neither of those two things were on the list, but I've heard a lot of talk about it being a good way to de-stress. You can even get doodling and colouring books geared towards adults, but I really don't mind getting one which is for children. Colouring is colouring, and doodling is doodling, right? It'll have the same affect no matter what it is!
I know that I talk about starting new things and new hobbies a lot. Or I've set goals and haven't followed them through, but I think these new things are doable! Apparently I would like to de-stress, whilst keeping my mind engaged and expressing creativity, and also giving myself a cramp in my hand!
Next time I see my therapist, we're going to discuss pacing. I have struggled with getting the balance between taking part in activities and getting some rest. I'm getting better at it, but it used to be that I would either not do things through fear that it would wear me out, or I would really go for it and wear myself out! So it'll be good for somebody to show me how to pace myself and get the balance.
I would just like to feel some sense of purpose and usefulness, but do it without wearing myself out.
Thursday 9 April 2015
Happenings of late
I feel like I only ever write update posts nowadays, but sometimes it is best to just let things accumulate (I managed to spell that word correctly!)
Scans
I had a CT scan a couple of weeks ago (I think it was a couple of weeks ago. I've lost track a bit) That scan was to check the status of a very tiny nodule in my chest. The scan was very quick. When it was done I thought,"Oh, is that it?" It was around 5 minutes, I would say. They did it on a Monday evening, at Leeds General Infirmary rather than St. James. I don't know why they sent me there but It was fine. When we got there the waiting room was empty so I didn't wait long at all. In fact, I would guess that the whole experience took 15-20 minutes. Just a rough estimate.
Saturday morning I went for an MRI in the usual place (I don't really know why they did it on a Saturday morning. I just know that the scans needed to be done within a certain amount of time) Before I went for this scan, I made two decisions. The first decision was that I would not take any music to listen to whilst I was being scanned. I could have, and I did last time, but you can't hear it. I think they think it drowns out the noise of the scan, but actually the noise of the scan drowns out the music you've brought with you! Or maybe they allow it because they think it'll put you at ease, but it doesn't because the music is being drowned out by the machine! The other decision I made, the morning of the scan, was to stay in pyjamas for it. It was a Saturday morning, I couldn't wear anything metal (which mostly rules out bras and jeans) I wanted to be comfortable...Pyjamas seemed like the most logical option!
I felt a bit strange when I came out the MRI. I think it was disappointment? I'm not sure. It was just strange this time because it was so different to the last MRI I had at this particular hospital. Last time, they put this thing on my chest to kind of, hold me still. This time they didn't and I got a bit twitchy. My legs twitched a bit. One of my hands was twitchy. I kept getting itches I couldn't scratch. Well, I had to will myself not to scratch because I needed to be as still as possible. They put a head frame on me like they last time, but last time the head frame had these mirrors in which meant I could see my feet. On Saturday however, that particular head frame, did not have mirrors in. I was fine, but that might have been because I've had an MRI before. They gave me headphones, which lessened the noise of the scan a bit. It was all just very uncomfortable, and I was glad to get out of there, and I would like to not have to do that again for a while! Definitely a wise choice to wear my pyjamas, though, and I would recommend you do the same if you ever have to go for a scan!
Music team:
I had approached the leader of my church's music team a couple of years ago, but after I got ill it got put on the back burner. Actually, it basically got forgotten about for a while. Then when I started thinking about it again, I just felt like it wasn't possible. Standing for long periods of time tends to hurt my shoulders. As well as that, practice sessions tend to take place in an evening, and I was worried I would not have the energy for it. A friend asked me why I wasn't on the team, and I thought about that question a lot. She kept encouraging me and then I eventually went to speak to the team leader again, and then went to a few rehearsals. Now I make sure I have enough energy for the practice in the evening (I did have to lean against a friend the other night, but most of the time I am fine) Also on the days when I'm singing, I take a pillow to church and lean against that during the service. To be honest, I feel like I should should do this every Sunday, as it's very comfortable!
Charity shops:
One afternoon, a friend drove me into town and I went and got a bunch of application forms from charity shops (there's a lot of them where I live) One of the shops did not give out application forms, instead you came in for a little trial run to see how you like it. So I did that and I when I got there I told someone that ideally I should be sat down. I've done it twice now and they are lovely. I'm still applying to another shop as well because I figured that more than one couldn't hurt...As long as it's not too many and I don't overdo it! I think one afternoon at one place, and one afternoon at another should be fine. I hadn't realised quite how much my confidence has been dented. I'm a friendly person and I do like people, but just approaching somebody in the charity shop was a little nervewracking. Also last week when I went to the charity shop, there were two people there who I had not met yet and I was slightly nervous about that. Once I got over that hurdle of you know, saying hi, I felt more comfortable. In fact I was slightly surprised by how easy just saying hi could be. Maybe even inappropriately surprised by how easy it was!
CBT:
CBT stands for Cognitive Behavioural Therapy which basically means that a therapist helps you change your thought processes on things. I had been ignoring just quite how sad the events of the past few years have made me, but I got to a point where I couldn't. I forget when that point was but gosh did I feel sad! It just caught up with me, and I started to think to myself,"Is this my life now? I think it might be. I think this might be my life now!" I don't need to tell you that cancer is hugely traumatic. I originally typed that it was distressing, but I think that that is an understatement. It really is traumatic. It's traumatic to watch someone go through it, it's traumatic to watch someone die from it, and it's traumatic to go through it yourself. I had just got on with it, and I wanted to be Little Miss Positivity but that meant that sort of accidentally smushing down the bad feelings. It's not even just that I wanted to be Little Miss Positivity, I think part of me thought I wasn't allowed to be sad. Before I started treatment, I thought that it would all be very straightforward and fine, and over by the end of 2013. I thought it would not be the struggle that say, someone with a more aggressive cancer would go through. It hasn't been straightforward, though. There's been a lot of setbacks. A lot of complications. A body that isn't the same as it was pre-cancer. A body which will always need medication to help it compensate for the things it can't do on it's own anymore. It has been very overwhelming at times, but now I've accepted that I'm well within my rights to be upset and angry about it, I am able to reach out to people and get some help. I had to accept something was wrong before I could make it right again.
What's happening next?
Not a lot. Well, I have appointments with both consultants this month. I wasn't going to keep the one with the endocrine doctor because I didn't think anything there was any point in seeing both the endocrine doctor AND the consultant, but I spoke to one of the endocrine nurses recently and she said that I should keep the appointment because the doctor is always pretty busy and hard to get an appointment with. I see the consultant at St. James' towards the end of the month, and although I'm not sure if she'll have the scan results, I still feel a bit impatient. I think I've covered everything. The good news is that I am finally working on feeling better emotionally. The struggle has been 90% mental, I think, and I'm finally reaching out to people who can help me! I still want to be a positive thinker, but I think it can help, but I know now that I am allowed to feel sad.
Scans
I had a CT scan a couple of weeks ago (I think it was a couple of weeks ago. I've lost track a bit) That scan was to check the status of a very tiny nodule in my chest. The scan was very quick. When it was done I thought,"Oh, is that it?" It was around 5 minutes, I would say. They did it on a Monday evening, at Leeds General Infirmary rather than St. James. I don't know why they sent me there but It was fine. When we got there the waiting room was empty so I didn't wait long at all. In fact, I would guess that the whole experience took 15-20 minutes. Just a rough estimate.
Saturday morning I went for an MRI in the usual place (I don't really know why they did it on a Saturday morning. I just know that the scans needed to be done within a certain amount of time) Before I went for this scan, I made two decisions. The first decision was that I would not take any music to listen to whilst I was being scanned. I could have, and I did last time, but you can't hear it. I think they think it drowns out the noise of the scan, but actually the noise of the scan drowns out the music you've brought with you! Or maybe they allow it because they think it'll put you at ease, but it doesn't because the music is being drowned out by the machine! The other decision I made, the morning of the scan, was to stay in pyjamas for it. It was a Saturday morning, I couldn't wear anything metal (which mostly rules out bras and jeans) I wanted to be comfortable...Pyjamas seemed like the most logical option!
I felt a bit strange when I came out the MRI. I think it was disappointment? I'm not sure. It was just strange this time because it was so different to the last MRI I had at this particular hospital. Last time, they put this thing on my chest to kind of, hold me still. This time they didn't and I got a bit twitchy. My legs twitched a bit. One of my hands was twitchy. I kept getting itches I couldn't scratch. Well, I had to will myself not to scratch because I needed to be as still as possible. They put a head frame on me like they last time, but last time the head frame had these mirrors in which meant I could see my feet. On Saturday however, that particular head frame, did not have mirrors in. I was fine, but that might have been because I've had an MRI before. They gave me headphones, which lessened the noise of the scan a bit. It was all just very uncomfortable, and I was glad to get out of there, and I would like to not have to do that again for a while! Definitely a wise choice to wear my pyjamas, though, and I would recommend you do the same if you ever have to go for a scan!
Music team:
I had approached the leader of my church's music team a couple of years ago, but after I got ill it got put on the back burner. Actually, it basically got forgotten about for a while. Then when I started thinking about it again, I just felt like it wasn't possible. Standing for long periods of time tends to hurt my shoulders. As well as that, practice sessions tend to take place in an evening, and I was worried I would not have the energy for it. A friend asked me why I wasn't on the team, and I thought about that question a lot. She kept encouraging me and then I eventually went to speak to the team leader again, and then went to a few rehearsals. Now I make sure I have enough energy for the practice in the evening (I did have to lean against a friend the other night, but most of the time I am fine) Also on the days when I'm singing, I take a pillow to church and lean against that during the service. To be honest, I feel like I should should do this every Sunday, as it's very comfortable!
Charity shops:
One afternoon, a friend drove me into town and I went and got a bunch of application forms from charity shops (there's a lot of them where I live) One of the shops did not give out application forms, instead you came in for a little trial run to see how you like it. So I did that and I when I got there I told someone that ideally I should be sat down. I've done it twice now and they are lovely. I'm still applying to another shop as well because I figured that more than one couldn't hurt...As long as it's not too many and I don't overdo it! I think one afternoon at one place, and one afternoon at another should be fine. I hadn't realised quite how much my confidence has been dented. I'm a friendly person and I do like people, but just approaching somebody in the charity shop was a little nervewracking. Also last week when I went to the charity shop, there were two people there who I had not met yet and I was slightly nervous about that. Once I got over that hurdle of you know, saying hi, I felt more comfortable. In fact I was slightly surprised by how easy just saying hi could be. Maybe even inappropriately surprised by how easy it was!
CBT:
CBT stands for Cognitive Behavioural Therapy which basically means that a therapist helps you change your thought processes on things. I had been ignoring just quite how sad the events of the past few years have made me, but I got to a point where I couldn't. I forget when that point was but gosh did I feel sad! It just caught up with me, and I started to think to myself,"Is this my life now? I think it might be. I think this might be my life now!" I don't need to tell you that cancer is hugely traumatic. I originally typed that it was distressing, but I think that that is an understatement. It really is traumatic. It's traumatic to watch someone go through it, it's traumatic to watch someone die from it, and it's traumatic to go through it yourself. I had just got on with it, and I wanted to be Little Miss Positivity but that meant that sort of accidentally smushing down the bad feelings. It's not even just that I wanted to be Little Miss Positivity, I think part of me thought I wasn't allowed to be sad. Before I started treatment, I thought that it would all be very straightforward and fine, and over by the end of 2013. I thought it would not be the struggle that say, someone with a more aggressive cancer would go through. It hasn't been straightforward, though. There's been a lot of setbacks. A lot of complications. A body that isn't the same as it was pre-cancer. A body which will always need medication to help it compensate for the things it can't do on it's own anymore. It has been very overwhelming at times, but now I've accepted that I'm well within my rights to be upset and angry about it, I am able to reach out to people and get some help. I had to accept something was wrong before I could make it right again.
What's happening next?
Not a lot. Well, I have appointments with both consultants this month. I wasn't going to keep the one with the endocrine doctor because I didn't think anything there was any point in seeing both the endocrine doctor AND the consultant, but I spoke to one of the endocrine nurses recently and she said that I should keep the appointment because the doctor is always pretty busy and hard to get an appointment with. I see the consultant at St. James' towards the end of the month, and although I'm not sure if she'll have the scan results, I still feel a bit impatient. I think I've covered everything. The good news is that I am finally working on feeling better emotionally. The struggle has been 90% mental, I think, and I'm finally reaching out to people who can help me! I still want to be a positive thinker, but I think it can help, but I know now that I am allowed to feel sad.
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