Had a long and stressful day at the chemo unit yesterday. It was just one of those days that I sem to be excelling at - I really don't make this up - I have witnesses!!
I did as I was told and put my name down for the chief oncologist - his secretary scared me so thought I'd better do as she said as I need her on my side to do the referral!!!
I had a 1030am appointment - never a good slot anyway. I waited over 3 hours only to find the oncologist had gone off to the next clinic and I was next to be seen. I was so upset and the poor research nurse who had put my name down felt awful too as she hadn't realised he would be leaving clinic early. Anyway, I went to see the other oncologist - I like them all so I don't mind who I see - it seesm it's the secretary that does!!! He told me my CT scans were really good as my liver lumo had gone down from 3.3cm to 1.8 cm which is brilliant and the lymph nodes under my right arm were now normal size. The Ct didn't see any changes in my chest so i don't understand why I'm so wheeezy. The ventolin does help and the becotide so he suggested having some antihistamine as well. My bone scan was difficult for them to read as most of the radioactivity was still in my lump in my arm where the nurse had injected it instead of my blood stream!!! It looked as if the areas in my hip and spine are about the same but it talked about the one in my rib had got bigger. Excuse me but I didn't even know there was one there - it doesn't hurt me. I said I wanted them to be honest with me but keep feeling they are hiding things. He thought it was because some people get so upset if they get told something which in the grand scheme of things isn't as important as other bits, that they may not tell you some things. I said I wasn't happy with that so he printed off my bone and CT scan so now can read it but of course don't understand some of the medical terms - mainly physiological bits. I will have to ask someone to explain some of the terminology to me. From what I understand there is another area in my sternum - chest bone which is suspicious so presumably that's why i had that chest pain a few weeks ago and I have some radiotherapy damage as well.
Next step is to send my reports on a CD Rom to the marsden to get their opinion about starting tykerb as I have 'failed' on the bone strengthener as the rib one has grown so need to come out of that trial anyway. For some reason, the letter from the marsden was not in my notes so it was a good job I had a copy of that letter with me!! Apparently, my hospital don't like to send patients letters as it frightens them. For me, it is the unknowns which scare me more than the knowns - feel I should post a link to Donald Rumsfield classic speech about the knowns and unknowns when he was talking about terrorism!!!!
In the middle of my consultation, the fire alarm went off and it was continuous so it mean we all had to evacuate from the waiting room and the treatment room. The consultant was determined to carry on with his work with me as we couldn't smell anything and as I had had such a long wait!! That was good of him and he was anxiously ordering my IV infusions as we were being told to leave!!!
It was total chaos as nobody seemed to know where the fire exits were - they were signed but apparently we weren't supposed to go out that way as it meant going through casualty so everybody was herded off to the central corridor where all the lifts were. It was awful especially for the poor women who had the cold cap as we were all standing in the way of the lifts and these poor women were so upset as it meant the cold unit had been unplugged and so there was a risk that it wouldn't work properly and they may lose their hair. Apparently, they will 're-evaluate their fire procedures' - I can feel a letter coming on!!!!
When it was all clear and we could go back in, the onc told me the secretary was all set to send everything off, and he would dictate the letter yesterday afternoon. Let's see what happens shall we!!!
It was a long and frustrating day - made worse in the evening by poor Laura being unable to sleep and getting upset that I will die soon. I told her what she already knew ie that my cancer has spread and that's why I'm having chemo. She seems to be losing a lot of hair as well at the moment so she's upset about that.
Off to the doctor about my wheeze which of course is nowhere as bad now I'm home and sitting still and collect Laura to take her to the doctor as well.
I did as I was told and put my name down for the chief oncologist - his secretary scared me so thought I'd better do as she said as I need her on my side to do the referral!!!
I had a 1030am appointment - never a good slot anyway. I waited over 3 hours only to find the oncologist had gone off to the next clinic and I was next to be seen. I was so upset and the poor research nurse who had put my name down felt awful too as she hadn't realised he would be leaving clinic early. Anyway, I went to see the other oncologist - I like them all so I don't mind who I see - it seesm it's the secretary that does!!! He told me my CT scans were really good as my liver lumo had gone down from 3.3cm to 1.8 cm which is brilliant and the lymph nodes under my right arm were now normal size. The Ct didn't see any changes in my chest so i don't understand why I'm so wheeezy. The ventolin does help and the becotide so he suggested having some antihistamine as well. My bone scan was difficult for them to read as most of the radioactivity was still in my lump in my arm where the nurse had injected it instead of my blood stream!!! It looked as if the areas in my hip and spine are about the same but it talked about the one in my rib had got bigger. Excuse me but I didn't even know there was one there - it doesn't hurt me. I said I wanted them to be honest with me but keep feeling they are hiding things. He thought it was because some people get so upset if they get told something which in the grand scheme of things isn't as important as other bits, that they may not tell you some things. I said I wasn't happy with that so he printed off my bone and CT scan so now can read it but of course don't understand some of the medical terms - mainly physiological bits. I will have to ask someone to explain some of the terminology to me. From what I understand there is another area in my sternum - chest bone which is suspicious so presumably that's why i had that chest pain a few weeks ago and I have some radiotherapy damage as well.
Next step is to send my reports on a CD Rom to the marsden to get their opinion about starting tykerb as I have 'failed' on the bone strengthener as the rib one has grown so need to come out of that trial anyway. For some reason, the letter from the marsden was not in my notes so it was a good job I had a copy of that letter with me!! Apparently, my hospital don't like to send patients letters as it frightens them. For me, it is the unknowns which scare me more than the knowns - feel I should post a link to Donald Rumsfield classic speech about the knowns and unknowns when he was talking about terrorism!!!!
In the middle of my consultation, the fire alarm went off and it was continuous so it mean we all had to evacuate from the waiting room and the treatment room. The consultant was determined to carry on with his work with me as we couldn't smell anything and as I had had such a long wait!! That was good of him and he was anxiously ordering my IV infusions as we were being told to leave!!!
It was total chaos as nobody seemed to know where the fire exits were - they were signed but apparently we weren't supposed to go out that way as it meant going through casualty so everybody was herded off to the central corridor where all the lifts were. It was awful especially for the poor women who had the cold cap as we were all standing in the way of the lifts and these poor women were so upset as it meant the cold unit had been unplugged and so there was a risk that it wouldn't work properly and they may lose their hair. Apparently, they will 're-evaluate their fire procedures' - I can feel a letter coming on!!!!
When it was all clear and we could go back in, the onc told me the secretary was all set to send everything off, and he would dictate the letter yesterday afternoon. Let's see what happens shall we!!!
It was a long and frustrating day - made worse in the evening by poor Laura being unable to sleep and getting upset that I will die soon. I told her what she already knew ie that my cancer has spread and that's why I'm having chemo. She seems to be losing a lot of hair as well at the moment so she's upset about that.
Off to the doctor about my wheeze which of course is nowhere as bad now I'm home and sitting still and collect Laura to take her to the doctor as well.
Labels: scan results/fire alarm
posted by dippykate @ 8:26 AM
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