On the 20th September I got a cold, I had been expecting it. I went away for the weekend with a group of friends, and my fiancée and he and one of the guys we gave a list both had stinking bad colds. So, I wasn't surprised when by Monday I started getting that, I'm getting a cold feeling, and by Wednesday felt awful. The other friend in the car was also doing the same. As part of the cold my glands came up in my throat. Since I had glandular fever at at 15 I often suffered from this, being tired, or being ill, my glands in my throat came up. This time one was specifically violent and I did feel real bad so I went to the doctor. He gave me some antibiotics for the gland. It helped a treat. Problem was by the Friday I was still feeling real bad. I had begun to throw up, only spit, but upto every couple of hours and as a result when my urine went darker I assumed I was just dehydrated, but wasn't good at drinking or eating much as I felt so bad and I very easily felt very tired - we tried to go shopping but I couldn't walk very fast and felt so tired after even a couple of isles. So, Monday came and I went back to the doctor. He sent me off to haematology to have some blood tests done.
Monday evening, I got a call from my doctor. Basically saying the lab were really worried about the results and that I needed to get to a specific hospital. Watford. This wasn't very local, but off we went. When I got there, they took some blood, more blood, some blood and for a change some blood - Oh and a urine sample. After a while, one of the doctors asked me how long I had been a yellow colour. Both me and my fiancée looked at each other and I said "I'm not" but sadly, sure enough, I was indeed now yellow. I know this means kidney/liver type problems so this was not a good sign. Anyway, they decided they wanted to keep me overnight. I thought it would be shove me on a drip to rehydrate me, more antibiotics or something maybe a couple of days in, feel better soon.
The next day, they took me down to an area called PIU and did a bone marrow test. I was very puzzled but I felt so lousy I don't think it dawned on me to ask what they were testing for, I just went with it. They might have told me, but I think Id have remembered. PIU stands for Programming Investigation Unit, so I assumed they were the people who test everything until they find the answer lot. The bone marrow test is best described as uncomfortable as they numb you beyond belief (the spot they like is if you put your hands on your hip, it would be where your thumb is approximately as the bone is quite close to the skin) so you feel a lot of pushing and so on, it is in two parts. The first they just took a sample of the fluid inside the pelvis. You feel a popping noise much like a bubble-wrap would pop, its a very odd feeling. The second part is a core sample. This is not fun, as they have to literally core you like an apple but its done again in the same-ish spot but they want a core that goes to the other side. Lots of coring as they want the bone and all. I was taken back to my room and waited. I was still throwing up every so often, just like before. Then a man came in and introduced himself, and looked at me and blankly said "Its bad news, You have leukaemia." I of course promptly threw up and he left rapidly.
I didn't know much about leukaemia, but I didn't seem to think to ask, I think someone explained it to me. I was in a little bit of a daze, but I know I wasn't panicking, I think the fact that I had a serious illness wasn't the shock. It was the fact that I hadn't felt ill, I had had the same cold everyone else did. How come I was the one in hospital being told I was ill. I was then transferred to a different hospital. I don't recall at this time having any idea of how long I would be there or what they had in store for me. I think because I was still very ill with the cold and the liver/kidney problems that a lot of it went over my head. I don't like hospitals much, nor does my fiancée. My fiancée went home and did lots of searches on the Internet and came up with lots of info, we read it all, we found that the hospital I am in is the best in the UK if not the world and that came as a relief, knowing that if anyone could fix me, these people could. It seemed that the liver/kidney infection I had was going to be a big big problem. It meant they couldn't do the chemotherapy they wanted, so they gave me a very mild amount and couldn't give me all of the drugs they wanted yet, but it went on for ten days. Over the ten days I was pumped full of antibiotics and pills and the like but I myself felt a lot better by the end. In fact, I didn't feel ill at all. I had been a very violent yellow colour, and it seemed I had gone from having no allergies other than some cats to reacting to everything they gave me, I had a number of rashes and so with the yellow I looked very fetching.
Soon after I arrived at this hospital, they fitted me with a Hickman Line. This line consists of 3 tubes. Its quite big and I was very shocked when I woke up from the surgery to see it. I had imagined it to be quite small. The line is a very useful thing though. I'm not good with needles, this line means they don't have to use extra needles and so on to take blood and give me intravenous fluids, they just attach something to one of the three lines and either suck or push accordingly. It doesn't always want to give blood, which is frustrating as much for them as it is me, after all, I'm the one they wave the needles at. Sadly it got infected and went nasty and had to be removed. This was not a popular decision with me. They just literally pulled it out. I was rather shocked to say the least.
All of this couldn't have come at a more inconvenient time. I was due to be moving house just over two weeks after I was taken into hospital. We had found out the day I had the blood tests. I was also due to resign that day too as the move meant giving up my job which I was looking forward to doing, we planned on getting a dog, I was going to take a rest for a bit, do up the house, relax, have fun and do whatever. So much for our plans. I think the not getting the dog upset me more than having an illness! Well, the house move didn't go that smoothly, the money transfer didn't go as planned, the receiving solicitor said he didn't have it (when he must have done) and so we couldn't have the keys at the agreed time, and it seemed an eternity before we could have them, and I was stuck 100 miles away unable to do anything about any of it. My fiancée coped very well, I am so proud of him. He had to do everything, phone and close all the electricity, gas, phone type people and connect the new ones, he had to organize the removal men, fortunately we had agreed to get someone to move us, we had thought of doing it ourselves. The only thing that upset me was that when I had gone into hospital I hadn't thought I would never see my house again, I was sad never to see it again, I also hadn't seen inside the new one since April, five months, I had completely forgotten what it was like. Now, I lived there, and I couldn't picture it. That stressed me a bit, especially as there were no indications that I would see it till after Christmas! A friend of the family came up trumps, it was an idea given to me by an ex-manager she had suggested videoing the old house as I had been sad at the idea of leaving it anyway. Well, the friend of the family runs a camera shop and he came up with a video camera my fiancée could borrow for a few days. He took views of the house with some of our furniture still in it, he had packed a lot to keep him busy, and then the house empty. He then also took pictures of the new house, it was joyful to watch, I sat in hospital gleefully seeing our new house what felt like for the first time. It was wonderful, I could now close my eyes and picture each room.
After the first bout of chemotherapy, they let me out for 5 days, I must have been the happiest person alive. I got to travel to see my new house. I had my own keys and let myself in. It was very weird to turn up to a house, and see all my stuff in it, but having had nothing to do with it getting there. However, the five days passed so quickly, I was still very tired, but I had got to be with my fiancée, I had got to be in our new house, it was a wondrous feeling. By the end of the five days though, I felt so good, it felt stupid coming back to the hospital when I felt so well. It was very hard. The results of the bone marrow test after the first bout of chemotherapy said that there was no trace. I was in full remission after even a mild dose of chemotherapy, I was very relieved. This was the best news anyone with a cancer can hope for.
It certainly seems that with every question you ask, a whole load more crop up. They don't give up and say OK fixed on first test coming back as cleared. They want to make sure it has gone. However, none of them want to say how many clear tests they want, to even give you a hint of timescales. One thing I do find is that you ask a doctor something and you never get a yes/no answer, they will tell you facts of what has been but will not speculate about the future, not even a little. I'm not very good at that, I like to have a goal, even if its a moving one. As a programmer goals always move, I suppose its because I'm used to it Id rather have a goal than none. They wont even give you ideas, this annoyed me a lot, and the further through my treatment I got, the more it annoyed me, these people are supposed to be experts, they treat people like me fore a living, yet how come they cant even offer an vague estimation about anything to do with my treatment.
So, back in a second time, they could give me a full normal dose of chemotherapy this time, and it was hard going, it made me feel very sick, literally a few times. However, it was at least only for five days. Towards the end of this bout it transpired that it was all but guaranteed that I would be in hospital for Christmas and New Years. I didn't take this too well. I didn't want to spend the millennium night in hospital, nor Christmas, we had had plans for Christmas. It really felt like a dream bubble popped. Everyone has commented throughout my treatment how brave I am or how good it is to see that I'm happy and taking it well. I didn't take this news well at all. Publicly I was fine about it, but inside it hurt. I'm not a big new year celebrator, I don't party the night away, get ridiculously drunk or anything. However, I do believe that you see the new year in as you want to see it out. I didn't want to see most or all of it in hospital, I wanted to be in my home. When my fiancée arrived I cried. I think it was the first time since being in hospital. It wasn't because I didn't want to be with the people here, the nurses are wonderful people, they take great care of you and do everything they can to make you feel good.
However, as part of the chemotherapy treatment you go through a patch called being "neutropenic" this means you have no immunity, your blood production is minimal, and they often need to give you blood or some part of it to boost what you have, lots of pills and any infection could be a major problem. At this point, being in hospital is the best place to be, as they can pounce on the infection very quickly. If you aren't neutropenic they would probably let you out at least for the day, but it was most likely I would be neutropenic for Christmas and New year so I wouldn't even be able to go to my parents, who are local to the hospital, for Christmas lunch. The hardest part of the treatment is waiting, after chemotherapy you watch your blood counts go down, you are then neutropenic, you wait, its worse than waiting for exam results, and finally after an unknown period of time, they come back up and they can consider letting you go out again. While you are neutropenic because germs are such a threat to you, you cant eat various foods. Any visitors with colds or such are not allowed to see you, you aren't really allowed to leave your room. This time seems like an eternity.
By choice, I tend to spend a lot of my day on a computer, not going out. Often in summer one of the most common phrases you will here me say is "Oh, its a sunny day, I really ought to be doing something" but I will be inside, on a computer, tapping away. However, when you are in a room, waiting for your blood counts to come up, you have a few books, the amazing delights of daytime TV (you can feel your IQ drain watching this stuff), and fortunately I had a portable, it was still very frustrating. Time passes very very slowly. Its was also not helped by the fact that all the days of the week are the same. Unlike a normal life where you had school Monday to Friday, or work Monday to Friday, or whatever your days were, you had days on, days off. In hospital they are all the same. It does mean that time blurs. I kept a diary, I didn't write lots, just enough I hoped to remind me when I looked back. I added to it at random points when I felt I wanted to note something so it was very disjointed. Not long after my treatment started and I assume I was well enough to think of it, I decided to make notes of my blood counts so I could look back and see them for myself without having to ask for my notes. Most places don't like letting you read things like that so, it seemed a good idea.
At the end of the second bout, just before they were planning to let me out again, I got a few germs. They filled me with antibiotics. It was impressive. I presume because my immunity was down, but I had severe shakes, temperatures and the like. It made me very tired. They took some blood and found the bug and decided the antibiotic they had been giving me was the wrong one, then a day later the same people decided that the two antibiotics they were now giving me weren't the right ones either, and that I needed these three others. So, heading for time to go home and I'm on antibiotics. I was then told I could go home but had to be back every day. Well, as I had moved, this was no longer possible. I couldn't come back the 100 odd miles each day. My fiancée and I were very disappointed. We both looked forward to me getting out, as this was to be the last one before Christmas. We had planned to make it our Christmas. Finally I did get to go home, but as before the time flew by. Just before they let me out, we both noticed that my neck was swelling slightly but the doctors weren't so concerned.
For bout three, I came in and they started the chemotherapy, it was a different set of drugs from before, and instantly my neck swelled lots more, it looked like I gained 100 pounds but only around my neck, I felt really bad with it. This time they did agree that it was swollen and did lots of tests. They decided that I had blood clots around my neck, and it was the fault of the Hickman line (again) so, as the chemotherapy was ending the pulled the line out. I wasn't very happy. After all, this was line two that was being pulled out. I don't care what the doctors say, it does hurt. As I was due to have one or two more bouts, maybe more, they would of course have to fit another. I already felt like a Hickman line pin cushion. By this time I think to be honest I was sick of the whole idea, it had finally got to me, it was two weeks before Christmas, I wanted to be home, I didn't want to be in hospital where they only seemed to make me more ill. The drugs they gave me to thin the blood to get rid of the clots gave me a rash, and it itched a lot. At this point I was hoping the next Hickman line was not to be fitted till bout four. Least have a rest between times. The swelling did go down though, which was a relief. I had felt it was never going to go. Although, even now, 3 months after escaping my neck is still prone to swelling when I do things, the veins must have stretched.
Being in for both Christmas and New Year were not ideal. In fact, I was very down about it all. I've skipped saying much about being in because I felt very low and well, as the four walls don't change, I don't have anything really to say for myself. I did finally get a break at the beginning of January and some time in my new home, but the time out flew by, and soon I was back in again.
When I came back in, I was very surprised to hear that this was to be my last bout of chemotherapy. Due to the fact that it was the last time they were having me in, they decided not to do a Hickman Line this time, but something called a Central Line. It is very very similar, but it is not designed to be a permanent fixture (despite my experience with Hickman Lines, they are designed as a one off putting in idea). They had a hell of a job fitting it. Everyone and their dog seemed to have to have a go at putting it in, I looked like I had been on the end of a mad stabber of pens or something. It gave me a big boost of inspiration to actually get through it, in fact the last set of chemotherapy didn't even make me feel that sick. I was so looking forward to getting out, it was all that seemed important was putting up with whatever they did. It probably helped with the boredom too, knowing I could now plan for what I wanted to do with the rest of my life.
The last lot of chemo didn't even make me feel sick, I was quite surprised. After all, it was supposed to be a super massive dose of the stuff. This doesn't detract from the fact that I was already going nuts with boredom!
I was now in my final neutropenic phase I hope, only a long wait and then I got out for good. I knew I would have to come back for some tests and the like, but, it felt like it was coming to an end and it was a wonderful feeling. The central line was beginning to look a little sore, it had only been in a week. But as long as it could last out this final treatment I was trying to be a happy person.
This neutropenic phase is dragged, every day was longer than the one before, the only things kept me sane were the fact that I had this computer to type on, and a modem, and I could sneak out in the wee hours of the night and get my Emails! I know the doctors would shoot me, after all, Im neutropenic.. But then, I think back and I think of the half cooked chicken I was fed while neutropenic before, or the fact that the cleaner goes round all the patients and doesn't do the washing procedures before entering the room.. If it was really so bad for me, Im sure they would have done something about it. They let the other guy round here out to smoke a few times a day, so a brief trip to grab some Emails.. They can live with it.
Some horrible low life scum bag of down right massively deserving a trip to hell has stollen my wallet, from beside my bed, most likely with me in it. After all, I only leave the room when everyone else is asleep. I didn't have an awful lot in it, but its the principle, there was money, my cards, a few things of personal such as a tiny coat hanger which my fiancée made out of a paper clip for me. But all the same, I have the hospital who have conveniently decided I didn't pay my phone bill hassling me for more money when someone has stollen my only money!
I would put money on the fact that by now I was clinically insane. I was going nuts. I was prepared discharge myself, and just walk off. I was sleeping almost all day, and all night. I couldn't concentrate on anything, I was getting more and more short tempered with everyone and everything. Especially the feeble excuses from the doctors. As my blood count numbers began to pickup I got a temperature, which meant they put me on anti-biotics, no surprise, but once I had hit the magic go home numbers, they wouldnt let me go. First they pulled the central line out and waited to see if that fixed it, then different anti-biotics, and I was told 24 hours and I could go, I was very exceited. Then it changed to be 3 days time, then another doctor said a week.. I blew my stack. I vaguely recall promising to kill my consultant if I didnt go home.
Finally, I escaped, it would seem Im fixed.. Its so so so good to be home. I had to go back for a bone marrow test which they really couldn't be bothered to do to me. It took two weeks of all but constant phone calls to arrange the test and even when I was there they didn't seem to want to actually do it. Once done, it then took them around 2 months to send me the results! Which were.. Clear.
The harshest part is that they don't know what causes leukaemia, they cant tell for sure whether it has gone or not. A small part of me will always fear now that every time Im ill Im heading back in again, after all, I didn't have any of the normal symptoms. No bruises, no nothing.
They are currently trying to do a stem cell harvest from me. Once they have finished messing me around, I will let you know how it went.
Well, it didnt. Is the best answer, they stabbed me for 5 days with large large injections, which didnt amuse me in the slightest, and well, it didnt work. They didnt seem to give much of a care either to the fact that they had put me through a lot of stress for no out come. Worse to me, as a result, I am now facing the operation I basically would rather eat dung. They are to drill around 20 holes in my bottom and remove nearly a litre of bone marrow from my pelvis. This is a painful processes for just a couple of cc's, let alone that sort of quantity. Needless to say, Im really not looking forward to it. Especially as no one seems that confident of anything, they cant even be sure they will get enough.
They decided next in their infinite wisdom to make me go through with the bone marrow harvest which I had specifically said I didnt want. This entails having multiple holes drilled through your bottom into your pelvis and the liquid sucked/scrapped out.. It leaves deep holes which bruise, weakens your blood so they have to give you transfussions and generally leaves your whole bottom very sore. Although in the realistic term it does mean should you be ill again they will be able to feed you it back and hope to help you fight the leukaemia with your own cells.
A link which is of great news for me and others like me here
After the last bone marrow harvest, they decided they didnt get enough of the cells they wanted.They want to do another. I would rather eat dung. Anyones dung (no, dont post me it please). However, I will go, I will have it done again, I didnt enjoy it, Im looking forward to it even less than I did before. Its not an overly unpleasant thing, but it does leave your backside feeling very sore, you feel undignified knowing a team of people stared at your bottom for the opperation. I threw up after last time, and Im sure I was in shock, as I work up and was insanely cold, so much so they had me in foil blankets and so on. They had to keep warming me for about 4 hours.. I wasnt really awake that much either.. But I am going to have all this again. Sigh. More needles, more hospitals.. No fun..
2006...
Just a final update on the matter.
Ive been having blood tests each year to check Im still healthy, this year, was no different, they wrote to me telling me they had reoganised their department, oh joy, and to make them more efficient outpatients were now to be seen monday and tuesday mornings.. Yeah thats why my appointment was 12.45 (someone needs to tell them that thats afternoon!!!).
So, my husband and I went to the 12.45 appointment, around 1.30 I got called in for the blood test, and I guess nearer 2.30 was called in for my actual appointment, its amazing how stressful these events are, sitting around in a waiting room for near on 2 hours does your head in, if you didnt feel ill before you went, you sure do by the time they see you. I was ready to sleep for a year it seemed by the time I went in.
Anyway, went in, my blood counts were still good. Having started to come down with a sore throat and a bit of a cough, I was in a way surprised, after all, should be slightly squiffy, but hey, like I care. Im still good! Anyway, usual questions, are you healthy, how've you been.. blah.. like they listen.. Ever since treatment Ive had a few issues, nothing major, Im fat, and dont seem to be capable of being thin without almost certainly having to diet beyond reason which would make me depressed, I get some major pains in my guts which started in the last bout of chemo, Im guessing I have either an usla, or something in my bowl, and its just a very early warning system, but a majorly unmissable one! And, I guess, I am probably depressed a tad too. However, most docs cant be bothered unless you've tried to kill yourself a few times it seems it cant be that bad.. or some stuff.
Anyway, after he ignored my answers he said "Well, its been 5 years", my heart came to my mouth, "you dont have to keep coming if you dont want to" he said, HOOOORAH! Much as these people did their job and did me good, they treat you like slabs of meat, and an inconveinence, yet, they're the ones who kept me going, not me, I wasnt exactly coming for the fun of it. So, Im free, I finally can live on my life like anyone else I dont need to go and prove Im still healthy, I can be me, hopefully the next time I visit the hosptial, is when Im 90! and that will be coz I fell off some cliff rockclimbing or something