On the 9th Feb I popped along to the hospital for my op. The whole day was a surreal and unecessarily unpleasant experience. First of all, you have to arrive at 7.30 in the morning at the Clinical Support Unit. Why so early? The wards don't start chucking people out until at least 10am. Luckily it doesn't take long to get ready as you can't have breakfast or anything to drink before you come. The CSU is the another depressing place to hang about. Unlike most other bits of the hospital that I had to wait in there was no TV and it was freezing cold once you'd been sat there a while - and I ended up sat there for 6 and a half hours.
They couldn't find a bed for me and it was getting closer and closer to the time I was going to have my op and they still didn't have a bed. This seems to be quite a common thing - how much does that cost then? Surgeons, anaethetists, nurses, operating theatre time, all booked up, all possibly not able to do their job because there's no bed. It doesn't make sense. And I wasn't the worst of it - at least I'm reasonably young, fit and well - there were two older women in there with me also waiting for ages. On top of everything else we were all starving and on the table in front of us was a big pile of Wiltshire Farm Foods brochures - full of pictures of plates of food. Is that really necessary? I know they don't look tasty (its a sort of privatised version of meals on wheels) but hey - it's food and I hadn't eaten since 9pm the night before.
A bed was eventually found on the day ward - fine by me as I shouldn't have needed to stay the night - and I had my op. This one was very brief and I was round and out of the hospital as soon as I could stagger about on my own two feet. Just as well as the ward was about to close as I left.
I don't want to sound like I'm endlessly moaning, because I've read some American accounts of dealing with their health system and it makes me eternally grateful that we've got a public health system that is free and accountable to us and not just shareholders. But it does seem to be very badly put together. Each bit of it does their job well, and I've been treated all along by incredibly skilled people, but the system itself doesn't seem able to join up the bits. For example - I'm treated across three different sections of the trust I'm in, and I have separate number for each one. How much potential does that provide for administrative fuck ups? Everyone tells you that the one thing you should aim for when you have cancer is to keep things as normal as possible, but this is impossible when you're kept waiting, waiting waiting, never knowing how long you're going to have to wait for the next bit of the process. It also means you can't plan anything - one of the things about this cancer - and I imagine quite a lot of other cancers - is that it doesn't actually make you fell unwell and isn't really debilitating so it is quite possible to carry on leading a perfectly normal life if only the NHS would let you. You would have to have extraordinary powers of zen not to get wound up by it - and believe me I got wound up....
Wednesday, 30 May 2007
yes it is, no it isn't, yes it is.....
After a nail biting three and a half week wait I finally had my MRI scan - scheduled to co-incide almost exactly with the staff Christmas dinner. I didn't dare try to change it - who knows when another window might have opened in the hectic NHS scanning timetable. I realise now that this was pretty quick - a result of the hospital having to meet government targets, although I don't know what these are. I then spent a pleasant Christmas and New Year unsuccessfully trying not to worry about the possible results.
I went back for the next appointment with Kath to act as my advocate and to listen properly to what was said. The scan results backed up the diagnosis of papillary thyroid cancer, although this time I was told that the cell results from my thyroid were inconclusive and that those from my lymph node were suspicious but not diagnostic. A slightly different story from the previous visit. However the scan results were good enough to make it worth carving me up and removing my thyroid and my left side lymph nodes. I was a bit surprised about the change in story but it didn't register properly until I had left the hospital.
So, I'm hanging about, putting off work waiting waiting waiting for the operation when I get a call from the hospital saying that they want to do another needle biopsy - this time a slightly bigger one to get a better sample. Although I felt pissed off at being messed around I was quite glad that they had decided to make sure that it was necessary to remove all my neck bits. After this sample, and a number of phone calls to my consultants secretary I was handed over to the Max Facs team. This stands for maxilo facial, and no, I still have no idea what this means other than that they deal with head and neck surgery. It seems that because they would be involved in the surgery - doing the lymph nodes bit - their team was involved in the whole process. I went in for a consultation with a consultant from this team. This was very different matter from previous consultations. I was shown my MRI scan (couldn't help admiring what sharp images they were) and their concerns were explained to me. In fact the biopsy evidence was still so inconclusive that they didn't want to operate without being sure, so they decided to do a exicision biopsy - cutting a bit of the offending lump - so that they would have definite answer. So a date was arranged for my first bit of surgery - 9th Feb, at least 6 months after I had initially gone to the doctors.
I went back for the next appointment with Kath to act as my advocate and to listen properly to what was said. The scan results backed up the diagnosis of papillary thyroid cancer, although this time I was told that the cell results from my thyroid were inconclusive and that those from my lymph node were suspicious but not diagnostic. A slightly different story from the previous visit. However the scan results were good enough to make it worth carving me up and removing my thyroid and my left side lymph nodes. I was a bit surprised about the change in story but it didn't register properly until I had left the hospital.
So, I'm hanging about, putting off work waiting waiting waiting for the operation when I get a call from the hospital saying that they want to do another needle biopsy - this time a slightly bigger one to get a better sample. Although I felt pissed off at being messed around I was quite glad that they had decided to make sure that it was necessary to remove all my neck bits. After this sample, and a number of phone calls to my consultants secretary I was handed over to the Max Facs team. This stands for maxilo facial, and no, I still have no idea what this means other than that they deal with head and neck surgery. It seems that because they would be involved in the surgery - doing the lymph nodes bit - their team was involved in the whole process. I went in for a consultation with a consultant from this team. This was very different matter from previous consultations. I was shown my MRI scan (couldn't help admiring what sharp images they were) and their concerns were explained to me. In fact the biopsy evidence was still so inconclusive that they didn't want to operate without being sure, so they decided to do a exicision biopsy - cutting a bit of the offending lump - so that they would have definite answer. So a date was arranged for my first bit of surgery - 9th Feb, at least 6 months after I had initially gone to the doctors.
Monday, 28 May 2007
shock news!
This is going to speed up now, because I'm getting bored of looking back at it, and my memory is going a bit fuzzy.... I came back at the beginning of November from a very pleasant sleeping holiday in France to find a letter from the hospital telling me that the blood, x ray and needle test I had had were all normal. I breathed a sigh of relief - I hadn't realised how anxious I had been until I was let off the hook like that. I celebrated with a pint up the road and waited for my - what I considered a formality - appointment a couple of days later.
This time I had to wait an hour to be seen. The clinic was incredibly busy and some people there had been waiting from the morning session - so I guess I was lucky. I whiled away the time catching up on the celeb gossip and some afternoon TV (which for some reason is even worse than the morning) until I was put into an examination room for a bit more waiting. I'm not sure why the hospital does this - presumably to up your anxiety levels. A different doctor came in this time, and instead of telling me I was fine to go, everything normal, she told me that the ultrasound scan looked suspicious and that they were going to do an FNA and maybe also a MRI scan to see what was going on. I was a bit shocked. I'm not sure how quickly we got onto the C word, or who brought it up first, but she assured me it was very treatable, that surgery would sort it out, and basically there wasn't much to worry about. Of course not, it is after all only cancer.... Flailing around for another possible explanation for the ultrasound I asked if it could be anything else - but she obviously had decided that that was enough. "Could be TB" she replied rather snappily I thought. Not very likely - particularly as the chest x ray was clear. She left, I left, a bit more shocked, and stumbled downstairs to hand in my card for another ultrasound scan.
On the 16th November I had my next FNA this time by ultrasound so that they could be sure that the cells were from the right lumps. All pretty straightforward and the ultrasoundist put a note on the test to make sure that it was processed in time for my next appointment at the lumps clinic on the following Weds.
I went to this appointment on my own - which I regret. If you ever find yourself in a similar situation try to take someone with you all the way through - it definitely makes a difference. Anyway - things were a bit calmer in the clinic this time and I only had to wait briefly in the waiting room with the distracting things to do. Then I was shown into another examination room for some more anxious no-distractions waiting before the consultant came. He brought with him a little mouse student doctor who looked rather uncomfortable throughout the consultation I thought. He told me that they had found abnormal cells in my thyroid and in my lymph node and the solution was surgery and raioactive iodine. Hurrah! To his credit, when I told him I had read a bit about it on the internet he looked quite relieved - I obviously knew it was very treatable and wouldn't be doing any of that embarassing breaking down, getting in a state stuff. Funny thing is though, I don't think the C word was mentioned during this consultation, although I think we both knew what we were talking about. He told me I would be having an MRI scan and would have the appointment within the next two weeks (a very important distinction I later discovered, from having the scan within the next two weeks, the subletities of the wording escaped me at the time...). He was very kind and tried to be reassuring, and I left, on my own again, to shakily cycle home. At NO POINT in any of this process so far did ANYONE mention ANY sort of support being available from ANYWHERE. I have since discovered that this is common for thyroid cancer patients, and I'm sure for other sorts of cancer patients too.
This time I had to wait an hour to be seen. The clinic was incredibly busy and some people there had been waiting from the morning session - so I guess I was lucky. I whiled away the time catching up on the celeb gossip and some afternoon TV (which for some reason is even worse than the morning) until I was put into an examination room for a bit more waiting. I'm not sure why the hospital does this - presumably to up your anxiety levels. A different doctor came in this time, and instead of telling me I was fine to go, everything normal, she told me that the ultrasound scan looked suspicious and that they were going to do an FNA and maybe also a MRI scan to see what was going on. I was a bit shocked. I'm not sure how quickly we got onto the C word, or who brought it up first, but she assured me it was very treatable, that surgery would sort it out, and basically there wasn't much to worry about. Of course not, it is after all only cancer.... Flailing around for another possible explanation for the ultrasound I asked if it could be anything else - but she obviously had decided that that was enough. "Could be TB" she replied rather snappily I thought. Not very likely - particularly as the chest x ray was clear. She left, I left, a bit more shocked, and stumbled downstairs to hand in my card for another ultrasound scan.
On the 16th November I had my next FNA this time by ultrasound so that they could be sure that the cells were from the right lumps. All pretty straightforward and the ultrasoundist put a note on the test to make sure that it was processed in time for my next appointment at the lumps clinic on the following Weds.
I went to this appointment on my own - which I regret. If you ever find yourself in a similar situation try to take someone with you all the way through - it definitely makes a difference. Anyway - things were a bit calmer in the clinic this time and I only had to wait briefly in the waiting room with the distracting things to do. Then I was shown into another examination room for some more anxious no-distractions waiting before the consultant came. He brought with him a little mouse student doctor who looked rather uncomfortable throughout the consultation I thought. He told me that they had found abnormal cells in my thyroid and in my lymph node and the solution was surgery and raioactive iodine. Hurrah! To his credit, when I told him I had read a bit about it on the internet he looked quite relieved - I obviously knew it was very treatable and wouldn't be doing any of that embarassing breaking down, getting in a state stuff. Funny thing is though, I don't think the C word was mentioned during this consultation, although I think we both knew what we were talking about. He told me I would be having an MRI scan and would have the appointment within the next two weeks (a very important distinction I later discovered, from having the scan within the next two weeks, the subletities of the wording escaped me at the time...). He was very kind and tried to be reassuring, and I left, on my own again, to shakily cycle home. At NO POINT in any of this process so far did ANYONE mention ANY sort of support being available from ANYWHERE. I have since discovered that this is common for thyroid cancer patients, and I'm sure for other sorts of cancer patients too.
Tuesday, 22 May 2007
one stop clinic
My first visit to the hospital was on 22nd Sept 2006. I think it might be my first visit to this hospital ever. I was given an appointment for the breast clinic, despite the lump being in my neck, which caused a bit of alarm - what if they got my records mixed up, cut my breast off by mistake! The afternoon session though is for general lumps - of course. I think I only had to wait half an hour for this session, and was quite impressed that I was taken into an examination room and had my blood taken, my lump sampled (fairly painlessly) and sent downstairs for an x ray all at the same time. The x ray dept must be one of the most depressing places to work ever. It's lit by grim, not quite powerful enough fluorescent lights and the ceiling squats on your head like a threat. There is no natural light at all. And it's full of ill people. There were no chairs left in the bit I had to wait in - anyway, I could stand without pain so would have felt a bit bad occupying one. I had my lungs x rayed and was given a card to make an appointment for the final part of the process - an ultrasound scan.
I had the ultrasound a couple of weeks later - the ultrasoundist (what is their proper name?) took a long time and kept pointing at things on the screen to a doctor who was in the room with her. Being an eternal optimist I decided that the unease I felt in there was just down to normal hospital paranoia although I was a bit unnerved by the silence and the way they both went out of the room while they waited for the pics to print. At this point I was reassuring myself with my extensive internet research which said only approx. 3% of thyroid lumps were malignant. The ultrasoundist said I did have a lump in my thyroid and that I would probably have to come back for a FNA (fine needle aspiration - oh yes, I've got all the medical jargon now) under ultrasound. I walked out of there feeling a bit unnerved but trying to get myself to keep things in perspective. No point worrying about things until you knew there was something to worry about. Yeah right - that one works at 3pm on a sunny Autumn afternoon, but is no use at all at 3am with morning a long and dark way off.
I had the ultrasound a couple of weeks later - the ultrasoundist (what is their proper name?) took a long time and kept pointing at things on the screen to a doctor who was in the room with her. Being an eternal optimist I decided that the unease I felt in there was just down to normal hospital paranoia although I was a bit unnerved by the silence and the way they both went out of the room while they waited for the pics to print. At this point I was reassuring myself with my extensive internet research which said only approx. 3% of thyroid lumps were malignant. The ultrasoundist said I did have a lump in my thyroid and that I would probably have to come back for a FNA (fine needle aspiration - oh yes, I've got all the medical jargon now) under ultrasound. I walked out of there feeling a bit unnerved but trying to get myself to keep things in perspective. No point worrying about things until you knew there was something to worry about. Yeah right - that one works at 3pm on a sunny Autumn afternoon, but is no use at all at 3am with morning a long and dark way off.
Friday, 18 May 2007
In the beginning
Last July I noticed a lump on my neck and got myself along to the doctor, who referred me to the lumps clinic at the hospital (the breast clinic to be precise - first point of confusion). After a lot of poking , pricking and scanning - not to mention a quick bit of carving up - I was diagnosed in January with papillary thyroid cancer. Oh dear. A number of friends have suggested that I should write down what is happening to me - partly so I can give the patients advice and liason service in my local health trust the benefits of my experience, and partly so I stop ranting at them and spoiling a good pint. So I've decided to try blogging the whole sorry process and maybe make some sense of it all. Well, the worse that can happen is no one reads it and another medical masterpiece goes unnoticed.
The first thing I should say if you're still reading is that thyroid cancer is very treatable. Which as you can imagine is a big relief. The consultant who finally gave me my diagnosis described it as a lazy and indolent cancer. Hey! How did it know to take up residence in me? Anyway - as with many cancers no one is really sure what causes it, although it is strongly linked to exposure to radiation. I don't suppose this is why, but I did travel back through eastern europe about a month and a half after Chernobyl went up - including through Poland which I know was affected by fallout. And this gives my illness a pleasing socio-historical dimension I quite like the sound of....it can take a long time after exposure to develop - but I'm not sure its that long. Well, it's either that or those bird watching trips round Dungeness were more dangerous than they appeared. So - that's the start of it. What I thought I would do is to run through the diagnosis (which took some time what with everyone wanting their say) in a series of installments until I've caught up with myself as I am now then I can just add to it as things happen, or I feel a burning need to say something. But not right now as I'm off to Manchester in the morning and it's a long and tedious drive up the motorway.
The first thing I should say if you're still reading is that thyroid cancer is very treatable. Which as you can imagine is a big relief. The consultant who finally gave me my diagnosis described it as a lazy and indolent cancer. Hey! How did it know to take up residence in me? Anyway - as with many cancers no one is really sure what causes it, although it is strongly linked to exposure to radiation. I don't suppose this is why, but I did travel back through eastern europe about a month and a half after Chernobyl went up - including through Poland which I know was affected by fallout. And this gives my illness a pleasing socio-historical dimension I quite like the sound of....it can take a long time after exposure to develop - but I'm not sure its that long. Well, it's either that or those bird watching trips round Dungeness were more dangerous than they appeared. So - that's the start of it. What I thought I would do is to run through the diagnosis (which took some time what with everyone wanting their say) in a series of installments until I've caught up with myself as I am now then I can just add to it as things happen, or I feel a burning need to say something. But not right now as I'm off to Manchester in the morning and it's a long and tedious drive up the motorway.
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