So it is one year since the date of my diagnosis.
I have on the face of it completed the major parts of the treatment that has been recommended for me. I will now attend appointments three monthly.
Many people I see are asking me if I am "well" or "ok" now. I am happy to update people. But I think when it comes down to it, some are hoping I will say the magical words "all clear". They will be disappointed as the term "all clear" only exists in the Daily Mail.
No, I haven't had a scan. Scans can show one thing today and a completely different thing the next week. That applies to any one of us, not just cancer patients. If my Oncologist started mentioning full body scans it would be 50/50 whether I actually consented to it at all. As for going back and getting the results of said scan, hmmm, you've got perhaps a 20% chance of me bothering to do that. You have to let it go. Scans don't mean anything. They are simply a snapshot of one particular day. If the cancer spreads and becomes secondary breast cancer then it really doesn't matter too much how quickly it is detected. I know the papers don't tell you that.
I may well have a scan one day. Who knows.
At the moment I feel well. I have hair. I have learnt a few things. And that's enough for me.
Saturday 12 April 2014
Sunday 9 March 2014
Gender Reassignment Complete
The first thing to report is that I did not go to hospital at all during February. AT ALL. That was a weird feeling.
The day of my operation arrived, March 4th. I didn't have to be at hospital until 12.00 although obviously I was nil by mouth from 8.00am. I had made a doctor's appointment for Abbie at 9.00 to check that her recurrent ear infection was actually going and that she was not going for the hat trick of antibiotics courses as she has achieved in the past. Thankfully on this occasion it turned out that the recent double whammy of amoxicillin did the trick.
So the GP asks me how I'm getting on and I say ok. He tells me I've done "remarkably well". Praise indeed. I tell him that incidentally, I'm having a risk reducing hysterectomy too. That afternoon. I like to keep them on their toes.
Took the kids and their stuff to mum's, collected my Dad who now customarily accompanies my husband on various window shopping excursions (B&Q, Bensons for Beds - they know how to live) whilst I am under anaesthetic, and headed to Surgical Admissions. I did have a letter telling me I should phone the hospital at 10.45 to check there was a bed for me but I figured by the time I spoke to the right person and got the answer to that question I might as well just have travelled there anyway so I didn't bother with that.
Upon arrival things move forward in the usual way. I see my Consultant's Registrar and the the anaesthetist. They give me 1,000mg of paracetamol and 1,600mg (like, four tablets' worth!) of pre op ibuprofen. That doesn't normally happen. It's usually just a couple paracetamol to get the drug party started.
I am the only one on the afternoon list and I should be taken down by 2.00. I am pleased not to have to wait ages for once. I am asked to get changed and I do so and then have a dilemma about my pants. They are going to be putting in a catheter, which I haven't had before. I therefore surmise out loud to Dad and Dan that I should probably take my pants off. At which point Dad reminds me that given the nature of a Laparascopic hysterectomy and the route by which the redundant organs will be leaving the body, the catheter is just one of several reasons not to wear pants! For the record, I liked him better when he was cowed in to silence by the seriousness of the situation at my previous ops, he was now veering dangerously in to mickey taking territory.
I walked down to Theatre feeling pretty nonchalant really. I briefly saw my Consultant before they put me under. I didn't get to meet the robot, though.
I awoke again in Recovery just before 5pm. I felt as if I was in advanced 10cm dilated labour but with no real gauge of how and when it might ever end. Now I got through my second labour with no pain relief but psychologically this was very different and there was no room for heroes here folks! So I gleefully allowed the nurse to siphon Fentanyl through my cannula whilst at the same time syringing oramorph in to my mouth. As usual I couldn't stop shaking so they plugged me in to the bear hug blanket or whatever it's called.
Then I went up on to the ward. I nearly caused a division in the team during the first hour. The ward sister didn't want me to get out of bed to go to the toilet, she sent her nurse with a bedpan which I said I didn't want and that whilst I was physically able to get up then I would do so! Another nurse heard this happening and said she remembered me from last time and she was sure I would be able to walk (I'm flattered, I think) and she would help me. I did walk.
Paracetamol and ibuprofen didn't touch the pain but one Tramadol brought it down to 5cm dilated labour equivalent. Two more Tramadol at bedtime kicked the pain in to touch and also helped me sleep for the first time ever after an op, bonus.
There were three of us in the bay at bedtime and the due to A&E gynae admissions the bay filled up overnight until all six beds were occupied. Not seen that before, found it quite interesting to observe between periods of sleeping.
The next day the Registrar came in again. She said I could go home that day. To cut a very long and frustrating story short, I collected my things and we went home without any of my prescribed meds after 2.5 hours of unproductive waiting in the day room following a cock up in sending the pharmacy order down. I knew I had stacks of co-codamol at home still, which turned out to be a good thing as I did need them a couple days after.
Now I am recovering slowly, got some bruising and feel lightheaded quite often but no real pain as such. I'm taking it easy for the time being and hoping I won't get an infection like last time.
The day of my operation arrived, March 4th. I didn't have to be at hospital until 12.00 although obviously I was nil by mouth from 8.00am. I had made a doctor's appointment for Abbie at 9.00 to check that her recurrent ear infection was actually going and that she was not going for the hat trick of antibiotics courses as she has achieved in the past. Thankfully on this occasion it turned out that the recent double whammy of amoxicillin did the trick.
So the GP asks me how I'm getting on and I say ok. He tells me I've done "remarkably well". Praise indeed. I tell him that incidentally, I'm having a risk reducing hysterectomy too. That afternoon. I like to keep them on their toes.
Took the kids and their stuff to mum's, collected my Dad who now customarily accompanies my husband on various window shopping excursions (B&Q, Bensons for Beds - they know how to live) whilst I am under anaesthetic, and headed to Surgical Admissions. I did have a letter telling me I should phone the hospital at 10.45 to check there was a bed for me but I figured by the time I spoke to the right person and got the answer to that question I might as well just have travelled there anyway so I didn't bother with that.
Upon arrival things move forward in the usual way. I see my Consultant's Registrar and the the anaesthetist. They give me 1,000mg of paracetamol and 1,600mg (like, four tablets' worth!) of pre op ibuprofen. That doesn't normally happen. It's usually just a couple paracetamol to get the drug party started.
I am the only one on the afternoon list and I should be taken down by 2.00. I am pleased not to have to wait ages for once. I am asked to get changed and I do so and then have a dilemma about my pants. They are going to be putting in a catheter, which I haven't had before. I therefore surmise out loud to Dad and Dan that I should probably take my pants off. At which point Dad reminds me that given the nature of a Laparascopic hysterectomy and the route by which the redundant organs will be leaving the body, the catheter is just one of several reasons not to wear pants! For the record, I liked him better when he was cowed in to silence by the seriousness of the situation at my previous ops, he was now veering dangerously in to mickey taking territory.
I walked down to Theatre feeling pretty nonchalant really. I briefly saw my Consultant before they put me under. I didn't get to meet the robot, though.
I awoke again in Recovery just before 5pm. I felt as if I was in advanced 10cm dilated labour but with no real gauge of how and when it might ever end. Now I got through my second labour with no pain relief but psychologically this was very different and there was no room for heroes here folks! So I gleefully allowed the nurse to siphon Fentanyl through my cannula whilst at the same time syringing oramorph in to my mouth. As usual I couldn't stop shaking so they plugged me in to the bear hug blanket or whatever it's called.
Then I went up on to the ward. I nearly caused a division in the team during the first hour. The ward sister didn't want me to get out of bed to go to the toilet, she sent her nurse with a bedpan which I said I didn't want and that whilst I was physically able to get up then I would do so! Another nurse heard this happening and said she remembered me from last time and she was sure I would be able to walk (I'm flattered, I think) and she would help me. I did walk.
Paracetamol and ibuprofen didn't touch the pain but one Tramadol brought it down to 5cm dilated labour equivalent. Two more Tramadol at bedtime kicked the pain in to touch and also helped me sleep for the first time ever after an op, bonus.
There were three of us in the bay at bedtime and the due to A&E gynae admissions the bay filled up overnight until all six beds were occupied. Not seen that before, found it quite interesting to observe between periods of sleeping.
The next day the Registrar came in again. She said I could go home that day. To cut a very long and frustrating story short, I collected my things and we went home without any of my prescribed meds after 2.5 hours of unproductive waiting in the day room following a cock up in sending the pharmacy order down. I knew I had stacks of co-codamol at home still, which turned out to be a good thing as I did need them a couple days after.
Now I am recovering slowly, got some bruising and feel lightheaded quite often but no real pain as such. I'm taking it easy for the time being and hoping I won't get an infection like last time.
Thursday 30 January 2014
Impulse Purchases
Anyone ever signed up for something and looked at what they had signed afterwards and thought "crumbs how did that happen?!".
I went to the hospital today and saw a very nice lady, a Consultant Gynaecologist. I came away having signed a consent form for a (deep breath) Robotic Laparascopic total hysterectomy and bilateral salpingo-oopherectomy.
Don't get me wrong, it's what I've wanted all along, but as I made my way to my fourth pre surgery assessment clinic in less than 12 months I did fleetingly wonder how it all came to this. They've not quite reserved me my own chair in the pre assessment waiting room yet but my acquired nonchalance meant that even when I ended up with the slightly eccentric but sweet nurse doing my bloods I didn't even mind. Good thing too as it turns out, given that once the needle was in she promptly dropped one of the tubes on the floor and had to bend down and pick it up whilst holding the needle still in my vein. She said that had never happened to her before. I'd rather she bent down than took the needle out and stuck me again though!
Anyway back to the robot. Apparently I am an ideal candidate for keyhole surgery using the robot device. Great, off we go with that then. I shall be asleep so it is not really my concern whether R2-D2 performs my op, as long as he does a reasonable job.
The date of the surgery is 4th March. I already know I am on the afternoon list so at least I will be able to have breakfast and there won't be any waiting at hospital from 7.30am until 4.30pm hell, like last time.
I went to the hospital today and saw a very nice lady, a Consultant Gynaecologist. I came away having signed a consent form for a (deep breath) Robotic Laparascopic total hysterectomy and bilateral salpingo-oopherectomy.
Don't get me wrong, it's what I've wanted all along, but as I made my way to my fourth pre surgery assessment clinic in less than 12 months I did fleetingly wonder how it all came to this. They've not quite reserved me my own chair in the pre assessment waiting room yet but my acquired nonchalance meant that even when I ended up with the slightly eccentric but sweet nurse doing my bloods I didn't even mind. Good thing too as it turns out, given that once the needle was in she promptly dropped one of the tubes on the floor and had to bend down and pick it up whilst holding the needle still in my vein. She said that had never happened to her before. I'd rather she bent down than took the needle out and stuck me again though!
Anyway back to the robot. Apparently I am an ideal candidate for keyhole surgery using the robot device. Great, off we go with that then. I shall be asleep so it is not really my concern whether R2-D2 performs my op, as long as he does a reasonable job.
The date of the surgery is 4th March. I already know I am on the afternoon list so at least I will be able to have breakfast and there won't be any waiting at hospital from 7.30am until 4.30pm hell, like last time.
Friday 17 January 2014
In which hospital becomes a daily routine
Well it's been a while since I updated but if you assumed that meant that I'd been lying around doing nothing then to be honest, you wouldn't be that far off the mark.
I started 15 daily sessions of radiotherapy on 2nd January - Happy New Year to me...
My first few appointments were at 11.45 and I have to say, that appointment time was hugely irritating. What the hell has happened to hospital parking?? Now I have been coming to the place since April last year and I thought I had got to know the good and bad times for parking. However there has now been a complete shift back to the bad old days of not being able to get a space unless you arrive by 9am. What's that all about? It's not a gym for Christ's sake, it's not like everyone makes a bloody resolution to go to hospital more frequently in January!! I certainly didn't, anyway, although clearly that's how it has turned out given that I've been there every weekday since 2nd January now.
After a few 11.45 appointments I shifted to my requested earlier time of 9.30 which is much better for parking.
The radiotherapy itself involves a 15 minute session being 13 minutes of getting undressed, lying on a table and being manipulated to the nearest millimetre whilst imitating a dead weight and 2 minutes of being left alone in the room listening to the likes of Lenny Kravitz and Paul Young (hadn't heard "Every time you go away" for ages, quite enjoyed it) while a huge arm/beam device moves around targeting specific points on the chest wall with a radiation beam. They always put a jelly like pad on me first which kids the machine in to thinking there is tissue there - as opposed to skin and bone - as apparently otherwise the machine will give its best dose too far in to the chest whereas they want it to hit the chest wall itself. Tedious technical lecture over, moving on now.
The staff are all very nice but noted some of them have very cold hands.
There has been one day when treatment was aborted as the machine broke down. Apparently this is not a major problem and they have just added an extra day on at the end.
As for side effects, I'm getting a pinkish area at the site being treated. Looks like sunburn but you can't feel it like sunburn. The head radiotherapy
lady keeps shaking her head and saying there is a definite risk of the skin "breaking down". Having had chemo I'm now familiar with the throwing-all-possible-side-effects-out-there-in-the-hope-that-if-they-don't-in-fact-occur-the-patients-will-think-everything-is-just-dandy technique and I hope that is what is going to apply here. I shall keep on applying the aqueous cream and we will see.
In other news I have received my free prescription card. The mind boggles at the number of things I could now potentially obtain entirely gratis!
Also, Christmas happened. It was nice family time but frustrating being forbidden from even peeling a potato. I'm pleased to report that after a second course of antibiotics prescribed by my surgeon on Christmas Eve the infection seems to have passed and the range of movement in the arm has started to improve too. By itself. Now I don't want to discredit the exercises they recommended doing, but they didn't feel right so I stopped them. In some cases perhaps there is a school of thought which suggests that the concept of "Physio" is possibly no different to the concept of "Time".
Happy New Year one and all.
I started 15 daily sessions of radiotherapy on 2nd January - Happy New Year to me...
My first few appointments were at 11.45 and I have to say, that appointment time was hugely irritating. What the hell has happened to hospital parking?? Now I have been coming to the place since April last year and I thought I had got to know the good and bad times for parking. However there has now been a complete shift back to the bad old days of not being able to get a space unless you arrive by 9am. What's that all about? It's not a gym for Christ's sake, it's not like everyone makes a bloody resolution to go to hospital more frequently in January!! I certainly didn't, anyway, although clearly that's how it has turned out given that I've been there every weekday since 2nd January now.
After a few 11.45 appointments I shifted to my requested earlier time of 9.30 which is much better for parking.
The radiotherapy itself involves a 15 minute session being 13 minutes of getting undressed, lying on a table and being manipulated to the nearest millimetre whilst imitating a dead weight and 2 minutes of being left alone in the room listening to the likes of Lenny Kravitz and Paul Young (hadn't heard "Every time you go away" for ages, quite enjoyed it) while a huge arm/beam device moves around targeting specific points on the chest wall with a radiation beam. They always put a jelly like pad on me first which kids the machine in to thinking there is tissue there - as opposed to skin and bone - as apparently otherwise the machine will give its best dose too far in to the chest whereas they want it to hit the chest wall itself. Tedious technical lecture over, moving on now.
The staff are all very nice but noted some of them have very cold hands.
There has been one day when treatment was aborted as the machine broke down. Apparently this is not a major problem and they have just added an extra day on at the end.
As for side effects, I'm getting a pinkish area at the site being treated. Looks like sunburn but you can't feel it like sunburn. The head radiotherapy
lady keeps shaking her head and saying there is a definite risk of the skin "breaking down". Having had chemo I'm now familiar with the throwing-all-possible-side-effects-out-there-in-the-hope-that-if-they-don't-in-fact-occur-the-patients-will-think-everything-is-just-dandy technique and I hope that is what is going to apply here. I shall keep on applying the aqueous cream and we will see.
In other news I have received my free prescription card. The mind boggles at the number of things I could now potentially obtain entirely gratis!
Also, Christmas happened. It was nice family time but frustrating being forbidden from even peeling a potato. I'm pleased to report that after a second course of antibiotics prescribed by my surgeon on Christmas Eve the infection seems to have passed and the range of movement in the arm has started to improve too. By itself. Now I don't want to discredit the exercises they recommended doing, but they didn't feel right so I stopped them. In some cases perhaps there is a school of thought which suggests that the concept of "Physio" is possibly no different to the concept of "Time".
Happy New Year one and all.
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