I am feeling strangely calm and accepting again. Even after yesterdays news, I am quite a peace with it.
This feels very good after all the angst I have suffered the past couple of months. I started seeing my psychologist again when I feel into my big black hole and couldn't find a way out. I have only actually had about 4 sessions with her, but when I went to see her today, I was thinking I don't think I need to come back again at the mo. At the end of our session, she had obviously seen the difference in me, and asked how I felt about coming back - did I think I needed to. So mutually we decided, no, I have come to a place where I don't need her (for now). I am sure I will need her in the future, and she is very happy with this, for me to contact her when I need her again.
I have learned, through M, and mindfulness practices, to be more compassionate with myself. To live with myself, how I am, 'in the present moment'. Not to berate myself for having to stay in bed for example, due to fatigue. I have also learned to be at peace when sadness occurs, to let it out, cos keeping it in all the time, just takes so much energy, and to be happy, we have to let the sadness out. Also, I need to prioritise what I want to use the little energy I have on - ie doing things with Suzie, or with my friends, things that I want to do and things that make me happy.
It feels so good to be at peace again, and just live for the day, taking each day as it comes. I wish I could carry M on my shoulder to keep reminding me of things, when I do get angst!!
Life is good again, even though I am still physically exhausted, it is how it is.
:) :)
This is my story, as a 42 year old, young woman, living with terminal breast cancer.
Wednesday, 17 November 2010
Tuesday, 16 November 2010
Update following onc appointment
Went today to see oncologist for scan results. Mixed news really. All the old mets are still stable and unchanged, BUT there is a met on left lung, which at last scan in May was 3mm (and they were not concerned about it then), but has now grown to 8mm. They are not going to treat with chemo just now, as my body probably wouldn't take it. Now that we know it is not cancer that is knocking me sideways, we are now going down the cardiac route.
I already have mild heart failure, caused by the 1st chemo, but I do wonder if this has got worse. I have definitely become more breathless, get cold clammy sweats on exertion (housework etc), and of course the fatigue. GP yesterday also thought she could hear a heart murmur, so hope nothing is wrong with any of the valves. I already have an ECHO booked for the end of this month, but wasn't supposed to be seeing the cardiologist, but the oncs are going to write to him so hopefully will see him when I get scan. My GP has also started me on a diuretic to see if this makes any difference to me.
So basically, at the moment, we have to try to improve the quality of my life, as being able to do not a lot is not much quality is it?
I am fine about decision to stay off chemo just now, as I know body wouldn't take it, so just have to hope we get to the bottom of the exhaustion.
I am going to Norwich to see G and D from Friday till Monday. Dreading the trip on the train, but hopefully just sitting on my ass I will be ok, and it will be lovely to see them and get away from home - hopefully it will do me world of good to get away.
I already have mild heart failure, caused by the 1st chemo, but I do wonder if this has got worse. I have definitely become more breathless, get cold clammy sweats on exertion (housework etc), and of course the fatigue. GP yesterday also thought she could hear a heart murmur, so hope nothing is wrong with any of the valves. I already have an ECHO booked for the end of this month, but wasn't supposed to be seeing the cardiologist, but the oncs are going to write to him so hopefully will see him when I get scan. My GP has also started me on a diuretic to see if this makes any difference to me.
So basically, at the moment, we have to try to improve the quality of my life, as being able to do not a lot is not much quality is it?
I am fine about decision to stay off chemo just now, as I know body wouldn't take it, so just have to hope we get to the bottom of the exhaustion.
I am going to Norwich to see G and D from Friday till Monday. Dreading the trip on the train, but hopefully just sitting on my ass I will be ok, and it will be lovely to see them and get away from home - hopefully it will do me world of good to get away.
Friday, 12 November 2010
Scan results
Well I got a phone call this morning about latest CT Scan.
It was MOSTLY good news, as in, all the original mets are unchanged, liver is clear, BUT there is a nodule in the fissure of the left lung, which has grown from 3mm to 8mm from last scan (about 5 months ago). They have reported this as being suspicious, so I am still a bit in limbo. They will probably take scan and discuss at next x ray meeting which is not for another 6 days, and have more people look at it.
I have oncology clinic on Tuesday, where they may wish to do more investigations - maybe chest x ray, or MRI scan.
I really don't know what to feel. Obviously happy that spread is not what I dreaded it might be, but a bit puzzled and worried about area on left lung. So, more waiting, and waiting, and waiting...................
It was MOSTLY good news, as in, all the original mets are unchanged, liver is clear, BUT there is a nodule in the fissure of the left lung, which has grown from 3mm to 8mm from last scan (about 5 months ago). They have reported this as being suspicious, so I am still a bit in limbo. They will probably take scan and discuss at next x ray meeting which is not for another 6 days, and have more people look at it.
I have oncology clinic on Tuesday, where they may wish to do more investigations - maybe chest x ray, or MRI scan.
I really don't know what to feel. Obviously happy that spread is not what I dreaded it might be, but a bit puzzled and worried about area on left lung. So, more waiting, and waiting, and waiting...................
Tuesday, 9 November 2010
Still no answer
Phoned chemo nurse today, and my sodium is back to normal, so no explanation as to why I feel like this. Have my scan tomorrow, have to go see D after that, and they may try to see me at clinic on Friday instead of Tuesday.
Managed to shower today, and had to go to asda for mini shop, as was running out of supplies, but back in bed now, maybe could have stayed up longer , but its warm and comfy here so. Have headache, belly spasms (bad period) - nae helping!!
Just waiting for my darling daughter to come home from college. Ain't seen her since Friday so want a HUGE cuddle from her - she wont have an option :)
Update when I get scan results.
Managed to shower today, and had to go to asda for mini shop, as was running out of supplies, but back in bed now, maybe could have stayed up longer , but its warm and comfy here so. Have headache, belly spasms (bad period) - nae helping!!
Just waiting for my darling daughter to come home from college. Ain't seen her since Friday so want a HUGE cuddle from her - she wont have an option :)
Update when I get scan results.
Monday, 8 November 2010
Bad Few Days
Well................it started with very dodgy bowels on Friday, which continued to Sat morning, but worse than that is the extreme fatigue. I have basically not been out of bed since Friday night.
I was supposed to have 2 old sick kids reunions - one Friday lunchtime, and one Saturday night. I am gutted that there was no way I could have gone to either - just no way would I have made it.
I tried to get up for a while this morning, and lasted about 45 minutes. I decided to phone chemo nurse, and get the bloods checked that I had done at clinic 10 days ago. Turns out my sodium is only 129, which is low (not critically so), which could account for fatigue, and the weird sensations I have had in hands and feet a couple of times etc. He went and spoke to the doc who saw me at clinic, and they wanted my bloods rechecked. I had to drag my sorry ass out of bed and take myself down to docs (lot of effort believe me), and I have to phone tomorrow for results. I suppose I kind of hope its still low, as this would account for the way I feel, otherwise I don't know.
If I still feel like this on Wednesday, I am dreading going up to hospital to get scan, but will have to drag myself.
Was supposed to see my psych today, but had to cancel that - do not have the mental or physical energy for that.
Will post more later in week.
I know dad is worried about me, he keeps nagging me to see a doc, so sure he will he happier when I speak to him later.
I was supposed to have 2 old sick kids reunions - one Friday lunchtime, and one Saturday night. I am gutted that there was no way I could have gone to either - just no way would I have made it.
I tried to get up for a while this morning, and lasted about 45 minutes. I decided to phone chemo nurse, and get the bloods checked that I had done at clinic 10 days ago. Turns out my sodium is only 129, which is low (not critically so), which could account for fatigue, and the weird sensations I have had in hands and feet a couple of times etc. He went and spoke to the doc who saw me at clinic, and they wanted my bloods rechecked. I had to drag my sorry ass out of bed and take myself down to docs (lot of effort believe me), and I have to phone tomorrow for results. I suppose I kind of hope its still low, as this would account for the way I feel, otherwise I don't know.
If I still feel like this on Wednesday, I am dreading going up to hospital to get scan, but will have to drag myself.
Was supposed to see my psych today, but had to cancel that - do not have the mental or physical energy for that.
Will post more later in week.
I know dad is worried about me, he keeps nagging me to see a doc, so sure he will he happier when I speak to him later.
Friday, 5 November 2010
Disappointed
I continue to be very tired each day. Did my housework the other day, and its not like I have a mansion, and had to snooze for nearly 2 hours later in the afternoon.
Today, I was meant to be going to an old sick kids reunion lunch, but since 0530 this morning, have been up and down with extremely dodgy bowels, so now feel icky and weak, so have had to cancel going. Such a shame cos I was looking forward to meeting up with folks. There is a old ward 2 reunion tomorrow night, I do hope I can make it to there. There is just now way I could go today, altho I know by afternoon I will prob feel better once I am a bit more hydrated.
Still no word on date for CT Scan - wait for the post every day but nothing so far.
I am doing my compassion meditation every single night, hopefully it is helping.
Later folks
Update - got date and lovely contrast to drink in post today for scan - its next Wednesday 10th, with results Tuesday 16th - now the waiting begins - AGAIN. Must be one of the hardest parts of this shite
Today, I was meant to be going to an old sick kids reunion lunch, but since 0530 this morning, have been up and down with extremely dodgy bowels, so now feel icky and weak, so have had to cancel going. Such a shame cos I was looking forward to meeting up with folks. There is a old ward 2 reunion tomorrow night, I do hope I can make it to there. There is just now way I could go today, altho I know by afternoon I will prob feel better once I am a bit more hydrated.
Still no word on date for CT Scan - wait for the post every day but nothing so far.
I am doing my compassion meditation every single night, hopefully it is helping.
Later folks
Update - got date and lovely contrast to drink in post today for scan - its next Wednesday 10th, with results Tuesday 16th - now the waiting begins - AGAIN. Must be one of the hardest parts of this shite
Monday, 1 November 2010
New Month
Its the start of a new month. Do I feel better - no, not really. Had GP today, discussed lots of things, and yes more tears. She wants to see me every 2 weeks just now.
Had discussion with friend yesterday about how I felt about my whole situation, and got a lot out in the open, which I have wanted to do for a long time now, was scared about doing it (and not going into details), but felt a lot better after discussion.
Had reflexology session at CLAN today which was good - some ME time, and it does help relax me. Going there every 2 weeks so that's good, feel I really need it, and it does help.
Suzie has been with me all weekend so that has been good company for me. She asked what I wanted for Christmas - I just said "not to have cancer" - not being melodramatic, and know no-one can give me that pressie, but oh how it would be good.
I know my situation is hard for my friends, just didn't realise how hard.
More later
Had discussion with friend yesterday about how I felt about my whole situation, and got a lot out in the open, which I have wanted to do for a long time now, was scared about doing it (and not going into details), but felt a lot better after discussion.
Had reflexology session at CLAN today which was good - some ME time, and it does help relax me. Going there every 2 weeks so that's good, feel I really need it, and it does help.
Suzie has been with me all weekend so that has been good company for me. She asked what I wanted for Christmas - I just said "not to have cancer" - not being melodramatic, and know no-one can give me that pressie, but oh how it would be good.
I know my situation is hard for my friends, just didn't realise how hard.
More later
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