I got back in time for New Years. It was lovely to see R and awful to hear how miserable he’d been over Christmas. It made me really angry with his kids to know how they’d left him alone for both Christmas Day and Boxing Day and made me feel lucky that I felt that she wanted to spend her time with me.
Plans for New Year ’s Eve fell through, so instead, we stayed in. We had an early night instead. It was the nicest New Years I’ve had for years.
Sunday, 30 January 2011
91. Christmas
I drove down south Thursday 23rd. Getting out of the city was bad. The roads were snowy and traffic was awful. It was so bad I almost considered turning around and going home. Thankfully I didn’t and once I was clear of the city, the roads improved. Driving was fine, very very manageable and I made it to Suffolk in really good time.
I and I had a nice, quiet Christmas day, eating Mexican food for lunch and watching TV. In the evening we drove to my Mums. Should have been blissful but then I developed raging toothache from a broken tooth she’d got 2 weeks before. She was in agony. I was almost hysterical with worry about her. SOOOO much worse than any of my own pain. The rest of the evening was spent calling the emergency dentist number, establishing there was no emergency dentist over Christmas, phoning Doctors on call and collecting codeine from the hospital (this, at midnight).
Boxing Day (December 26th) was nicer. We had breakfast and lunch with my Mum and my twin 15 year old nieces and then drove back to I’s. It was a nice break although I and I were bickering and picking at each other by the time I left to drive home again.
I and I had a nice, quiet Christmas day, eating Mexican food for lunch and watching TV. In the evening we drove to my Mums. Should have been blissful but then I developed raging toothache from a broken tooth she’d got 2 weeks before. She was in agony. I was almost hysterical with worry about her. SOOOO much worse than any of my own pain. The rest of the evening was spent calling the emergency dentist number, establishing there was no emergency dentist over Christmas, phoning Doctors on call and collecting codeine from the hospital (this, at midnight).
Boxing Day (December 26th) was nicer. We had breakfast and lunch with my Mum and my twin 15 year old nieces and then drove back to I’s. It was a nice break although I and I were bickering and picking at each other by the time I left to drive home again.
90. Chemo Brain
The side effects after chemo 5 were pretty standard. I puked, twice. Felt sick for 3 days. Started eating again on day 4. Was very tired for days 3-6. What was new and a really unneeded side effect however, was the dreaded chemo brain. I’d heard the phrase bandied around but hadn’t really had it before. This time it hit.
Chemo Brain for the Uninitiated.
Confusion
Floaty feeling
Slow thought process
Forgetfulness
Dizziness
Vertigo
Finally and worst, a very weird sensation that my brain was left behind on a 10 second delay any time I moved my head. It created a horrible sicky feeling and gave a sensation of being in two places at once.
So I had chemo Thursday 16th. Nine days before Christmas. I was supposed to be driving home Monday 20th to my Mums and then on to my daughters Thursday 23rd.
Complication one: chemo brain. It hit about day 3 and was ongoing until Wednesday day 7. I was worried about getting across the country with it. I wasn’t up to the train, lugging a bag on and off trains. I wasn’t sure if I was OK to drive.
Complication two: snow. It had been snowing on and off in England for two weeks. The snow had piled up and melted once and then piled up again just before Christmas. Driving home with chemo brain and in the snow was a scary proposition.
Complication three: R. His kids spend every Christmas at their mums. Usually he goes abroad to avoid being on his own. This year he had chosen to stay at home. I don’t think it was for me. He didn’t want to go to his ex wife’s for the day and I was worried about him being alone on Christmas day.
My daughter told me repeatedly not to drive if I wasn’t well enough. I prevaricated indefinitely over what to do. Finally, finally, I determined to damn it all and go.
Chemo Brain for the Uninitiated.
Confusion
Floaty feeling
Slow thought process
Forgetfulness
Dizziness
Vertigo
Finally and worst, a very weird sensation that my brain was left behind on a 10 second delay any time I moved my head. It created a horrible sicky feeling and gave a sensation of being in two places at once.
So I had chemo Thursday 16th. Nine days before Christmas. I was supposed to be driving home Monday 20th to my Mums and then on to my daughters Thursday 23rd.
Complication one: chemo brain. It hit about day 3 and was ongoing until Wednesday day 7. I was worried about getting across the country with it. I wasn’t up to the train, lugging a bag on and off trains. I wasn’t sure if I was OK to drive.
Complication two: snow. It had been snowing on and off in England for two weeks. The snow had piled up and melted once and then piled up again just before Christmas. Driving home with chemo brain and in the snow was a scary proposition.
Complication three: R. His kids spend every Christmas at their mums. Usually he goes abroad to avoid being on his own. This year he had chosen to stay at home. I don’t think it was for me. He didn’t want to go to his ex wife’s for the day and I was worried about him being alone on Christmas day.
My daughter told me repeatedly not to drive if I wasn’t well enough. I prevaricated indefinitely over what to do. Finally, finally, I determined to damn it all and go.
89. Needle Happy
Friday, I turned up at the breast clinic. I have no particular aversion to the place, despite it being where I found out I’d got cancer. The only place I HATE going is the chemo hospital. I was taken in to see Mr. S. VERRRRRYYYY good looking man. Sexy accent too. He asked why I was still worried. I explained and he felt the lump. He didn’t seem too happy either but I was getting past being bothered about NHS staff being pissy with me. This is MY life and I’m not risking it because I don’t fall into an ‘at risk’ group, in their opinion. He sent me off for an ultrasound. I was happy with this, knowing that it would show up more than a mammogram.
The ultrasound radiographer was a man on this occasion. This shocked me but I wasn’t about to let false modesty affect my peace of mind. He WAS very thorough but I wasn’t 100% confident he knew what he was doing. He scanned the area of my scar and identified there was still a small seroma. I asked him to scan the lump. He did and said it wasn’t cancerous. He also completely scanned the rest of my boob, including my armpit. I also asked him to scan my right boob where I’d felt some lumpier than usual tissue. He obliged and saw nothing. I’m not sure why, but he went away and got another radiographer to look at the scan with him to double check that the lump I felt was nothing dangerous. He returned with her and they looked at it together. She said it was nothing dangerous as well. She also said that it would be extremely unusual for a recurrence so soon after my original cancer. While I appreciated her second opinion I wasn’t happy with her attitude. She made me feel as if she thought I was wasting NHS time and resources. She was abrupt and bordering on being unpleasant. Not really what you need if you’re scared you’ve got a fatal disease.
Back in the breast clinic, Mr. S took me into a normal consulting room instead of the dead relatives room, a good indication that the results were still good. He came in and said pretty much what the radiographer had said. THEN he asked me if I’d like him to biopsy it. The upshot of this question, really was, ‘Miss Elvin, would you like me to stick NEEDLES into your breast.’ Me. The wimp that hated injections and the dentist. From a bit of a distance, I heard my own voice (bloody traitor) saying, ‘Yes please!’
I got my tits out. Laid on the bed and asked the nurse to hold my hand. They joked with each other about his attitude, whether it was an attempt to put me at ease or because it was 4pm on the last working day before Christmas I have no idea. It actually didn’t hurt too much. I was sent away to wait for the results. For some perverse reason, I went back to the coffee shop R and I went to after the devastating news in July.
40 mins later I went back and waited in the clinic. I was called in after a long wait and got the fabulous news that the lump was ‘fatty necrosis’ aka dead fat. Think there might be a message in there somewhere.
The ultrasound radiographer was a man on this occasion. This shocked me but I wasn’t about to let false modesty affect my peace of mind. He WAS very thorough but I wasn’t 100% confident he knew what he was doing. He scanned the area of my scar and identified there was still a small seroma. I asked him to scan the lump. He did and said it wasn’t cancerous. He also completely scanned the rest of my boob, including my armpit. I also asked him to scan my right boob where I’d felt some lumpier than usual tissue. He obliged and saw nothing. I’m not sure why, but he went away and got another radiographer to look at the scan with him to double check that the lump I felt was nothing dangerous. He returned with her and they looked at it together. She said it was nothing dangerous as well. She also said that it would be extremely unusual for a recurrence so soon after my original cancer. While I appreciated her second opinion I wasn’t happy with her attitude. She made me feel as if she thought I was wasting NHS time and resources. She was abrupt and bordering on being unpleasant. Not really what you need if you’re scared you’ve got a fatal disease.
Back in the breast clinic, Mr. S took me into a normal consulting room instead of the dead relatives room, a good indication that the results were still good. He came in and said pretty much what the radiographer had said. THEN he asked me if I’d like him to biopsy it. The upshot of this question, really was, ‘Miss Elvin, would you like me to stick NEEDLES into your breast.’ Me. The wimp that hated injections and the dentist. From a bit of a distance, I heard my own voice (bloody traitor) saying, ‘Yes please!’
I got my tits out. Laid on the bed and asked the nurse to hold my hand. They joked with each other about his attitude, whether it was an attempt to put me at ease or because it was 4pm on the last working day before Christmas I have no idea. It actually didn’t hurt too much. I was sent away to wait for the results. For some perverse reason, I went back to the coffee shop R and I went to after the devastating news in July.
40 mins later I went back and waited in the clinic. I was called in after a long wait and got the fabulous news that the lump was ‘fatty necrosis’ aka dead fat. Think there might be a message in there somewhere.
88. Persistence
Many apologies folks for my negligence in updating this! LOADS has happened so bear with me and I’ll record it all. Reader, she’s flaky!
So. You may recall that I’ve obsessed on and off about a second lump in my skanky boob. I found it on GCSE results day and it’s been there ever since. I’ve felt it on and off, persuaded R to try to feel it, talked to S about it, mentioned it several times to L, my long suffering breast care nurse, got a consultant to look at it and finally, finally, discussed it with my oncologist. S had long been advising me to have a private scan, while at the same time warning me that it would piss off my NHS care team if I went over their heads.
I looked on line to see what was available and by accident came across a clinic offering not just the usual ultrasound and mammogram but also Digital Infrared scans and MRI scans. S had been recommending a total body MRI which would show up cancer anywhere in the body. I read a bit about each scan type and found out that mammograms weren’t great for women under 50 because breast tissue pre-menopause is too dense for a mammogram to read properly. Ultrasounds were the NHS scan of choice for breast checks for premenopausal women. MRI scans seemed to be the ultimate because they’d show up EVERYTHING although somewhere else I read that they could give false positive results. Scary shit. Making you think you had cancer somewhere else when you didn’t. Digital infrared scans on the screen looked good. Healthy tissue showed up blue, tumours bright pink. But no one seemed to know about them despite my emailing and asking.
So back to my oncologist. I’d told him about the lump and also about the pain I was having in my rib cage and collar bone. I also told him I was thinking about having a private scan because the lump was still there and I was worried. He wasn’t horrified but wasn’t happy and told me that I should speak to my breast care nurse before having a scan because it should be available on the NHS.
Later the same day I phoned the breast care nurse. My favourite nurse, L, didn’t call back, but another one did. She wasn’t happy with me. She pointed out how many people had checked my lump. I told her it felt just like the first one; the tumour. That I was worried because it hadn’t been properly checked and it wasn’t going away. Finally, she grumpily agreed to book me in to see Mr. S, one of the consultants. Result?
So. You may recall that I’ve obsessed on and off about a second lump in my skanky boob. I found it on GCSE results day and it’s been there ever since. I’ve felt it on and off, persuaded R to try to feel it, talked to S about it, mentioned it several times to L, my long suffering breast care nurse, got a consultant to look at it and finally, finally, discussed it with my oncologist. S had long been advising me to have a private scan, while at the same time warning me that it would piss off my NHS care team if I went over their heads.
I looked on line to see what was available and by accident came across a clinic offering not just the usual ultrasound and mammogram but also Digital Infrared scans and MRI scans. S had been recommending a total body MRI which would show up cancer anywhere in the body. I read a bit about each scan type and found out that mammograms weren’t great for women under 50 because breast tissue pre-menopause is too dense for a mammogram to read properly. Ultrasounds were the NHS scan of choice for breast checks for premenopausal women. MRI scans seemed to be the ultimate because they’d show up EVERYTHING although somewhere else I read that they could give false positive results. Scary shit. Making you think you had cancer somewhere else when you didn’t. Digital infrared scans on the screen looked good. Healthy tissue showed up blue, tumours bright pink. But no one seemed to know about them despite my emailing and asking.
So back to my oncologist. I’d told him about the lump and also about the pain I was having in my rib cage and collar bone. I also told him I was thinking about having a private scan because the lump was still there and I was worried. He wasn’t horrified but wasn’t happy and told me that I should speak to my breast care nurse before having a scan because it should be available on the NHS.
Later the same day I phoned the breast care nurse. My favourite nurse, L, didn’t call back, but another one did. She wasn’t happy with me. She pointed out how many people had checked my lump. I told her it felt just like the first one; the tumour. That I was worried because it hadn’t been properly checked and it wasn’t going away. Finally, she grumpily agreed to book me in to see Mr. S, one of the consultants. Result?
Tuesday, 25 January 2011
Interregnum
Apologies. I've tried to post several times but the @*%$@ pc has crashed. Am now updating on my non-internet enabled laptop. When I'm up to date, I'll copy and paste.
In this case, no news is good news folks!
XX
In this case, no news is good news folks!
XX
Tuesday, 4 January 2011
87. Number 5
Well. I've left it far too long to write this. Every time I tried, though, the thought made me feel so sick I couldn't bring myself to do it. BUT. Number 6 is looming so I must.
I was OKish the morning of chemo 5. I stayed in bed as long as possible but eventually had to get up. Just had a cup of Earl Grey (normal tea tastes metallic now, yuk) and no food. Don't want to give the sickness ANYTHING to work on. I phoned the hospital to ask for my favourite (Least hated. OK, OK, so that's unfair. Whatever) chemo nurse. The one I spoke to was the quietly spoken but slow male nurse I had for chemo 1. He took my request but said he couldn't promise anything.
When we got there, lo and behold, we waited. And waited. Now, I know EVERYONE waits for medical appointments but being forced to wait for chemo is above and beyond what is fair and rational. In, get it over with, out. That really is the best (again, least worst) way. Finally, finally, I was taken through. And waited again. When my nurse (not the one I'd asked for) did come over, she gave me the Emend anti sickness and agreed I needed to wait an hour. I asked if we could go away and wait somewhere else and she agreed. We went down to the cafe. R had coffee and I had a fruit tea.
We went back and waited AGAIN. I left R reading in the chemo room and paced around outside in the waiting area. It was preferable to being in that room. Being in there makes me feel sick even when I'm having nothing done. Eventually I went back. The nurse came back and I asked for hot water to bring my veins to the surface. She told me to put my hand under the tap, which I did. She came back and off we went.
I was pathetic. She put the canula in and it hurt. I could feel myself tearing up and she was good. She finished inserting it and THEN was nice to me. Bad move. It made me worse. She started injecting (urgh, NOW I'm feeling sick just writing this) and I tried really hard to read. No luck. I varied between trying to read and sitting with my eyes closed. Periodically, she tried to make conversation but I wasn't up to it while that poison was going into me. After syringe 2 or 3, it started to sting. I told her, but she insisted it was OK. I was jumpy, restless and just downright shit. By the last of the 5 syringes the stinging was constant. I told her and she again tried to reassure me. I don't know, maybe it WAS in my head. Maybe not. Only one way out of there though...
I was OKish the morning of chemo 5. I stayed in bed as long as possible but eventually had to get up. Just had a cup of Earl Grey (normal tea tastes metallic now, yuk) and no food. Don't want to give the sickness ANYTHING to work on. I phoned the hospital to ask for my favourite (Least hated. OK, OK, so that's unfair. Whatever) chemo nurse. The one I spoke to was the quietly spoken but slow male nurse I had for chemo 1. He took my request but said he couldn't promise anything.
When we got there, lo and behold, we waited. And waited. Now, I know EVERYONE waits for medical appointments but being forced to wait for chemo is above and beyond what is fair and rational. In, get it over with, out. That really is the best (again, least worst) way. Finally, finally, I was taken through. And waited again. When my nurse (not the one I'd asked for) did come over, she gave me the Emend anti sickness and agreed I needed to wait an hour. I asked if we could go away and wait somewhere else and she agreed. We went down to the cafe. R had coffee and I had a fruit tea.
We went back and waited AGAIN. I left R reading in the chemo room and paced around outside in the waiting area. It was preferable to being in that room. Being in there makes me feel sick even when I'm having nothing done. Eventually I went back. The nurse came back and I asked for hot water to bring my veins to the surface. She told me to put my hand under the tap, which I did. She came back and off we went.
I was pathetic. She put the canula in and it hurt. I could feel myself tearing up and she was good. She finished inserting it and THEN was nice to me. Bad move. It made me worse. She started injecting (urgh, NOW I'm feeling sick just writing this) and I tried really hard to read. No luck. I varied between trying to read and sitting with my eyes closed. Periodically, she tried to make conversation but I wasn't up to it while that poison was going into me. After syringe 2 or 3, it started to sting. I told her, but she insisted it was OK. I was jumpy, restless and just downright shit. By the last of the 5 syringes the stinging was constant. I told her and she again tried to reassure me. I don't know, maybe it WAS in my head. Maybe not. Only one way out of there though...
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