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| Appointments:
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01-Aug-02 | 02-Aug-02 | 07-Aug-02
| 11-Aug-02 | 13-Aug-02 | 19-Aug-02
| 21-Aug-02 | 22-Aug-02 | 23-Aug-02 | 24-Aug-02 | 25-Aug-02 | 26-Aug-02 | 28-Aug-02 | 29-Aug-02 | 30-Aug-02 | 31-Aug-02 |
| 1
AUGUST 2002 University College Hospital - Nassau Street - Radiotherapy Clinic |
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Went to the Radiotherapy Clinic prior to having chemo number two. Saw Charlie again. Spoke in-depth about lots of things that concerned me (I'm not going to discuss everything here, sorry peeps - some things are private!). He took notes of my symptoms and side effects from the chemo and how things were going generally. The other BAD thing (well in my eyes it is!) is that the choice has really been taken away from me about this Hickman Line thing. It could mean risks are increased if there are complications later and they can't find a vein to pump antibiotics in me or something. My operation is planned for 21 August 2002 at UCH. He knows I don't want it, but it's for my own good, so I have to do as I'm told. I will be staying in overnight and then having chemo number three on the ward the next day. It just worries me, the thought of it being in all the time and also the having to flush it to clean it as well. Still always look on the bright side of life, da-dant da-dant da-dant da-dant……at least there will be no more needles!!! |
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AUGUST 2002 University College Hospital - John Astor House - Foley Street - London |
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Walked to the Chemo Suite and saw Mark on the way "Hi Karen" and general conversation. I thought he'd be back before we got there with my skills on the Zimmer frame, and I was right. There he was just as I got through the door! The chemo was ordered (it's never ordered before you turn up as it's too expensive to throw away if you don't turn up!). This time it was two attempts to find a vein. Sally Lyons (my nurse from last time) was there again for me. Also Liz (the cannular expert!). However, it was in an awkward place and it hurt like hell going in. I had a bruise before I left the Chemo Suite. It stopped dripping and we had to summon a nurse. It was not panic stations though, just where it was in an awkward place and the angle of the hand had closed the bit going into the vein and blocked it from flowing. (I don't know the technical terms!). I was there for about 3.5 hours this time, including waiting for my drugs which was a lot better than last time. I saw a few people from the last time I went and we said "Hi" again. Met a new lady from Ascot who also had two cats so we got on like a house on fire as you can imagine! Then I was free to go, and had my Mercedes ready to take me home. No it wasn't specially laid on, it was hospital transport, very nice it was too. Being a younger driver he also was quicker than the others so we got home in just over an hour, including going on the M25, not bad huh! He asked if I minded the window open "No" said I "as long as my hair stays on!". Mind you when we got out the other end my Mum who was in the back seat, seemed to have a furry blouse on very similar to my hair colour…..he also had a furry dashboard, bit strange in a Merc, thought that went out in the 70's!! ;-) Now I just have my operation to look forward to (NOT!)…..or rather dread…… it'll all be fine, so they tell me…. still always look on the bright side of life, da-dant da-dant da-dant da-dant….!
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| 2
AUGUST 2002 Home |
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Same old symptoms, just as you start to feel better, it comes back with a vengeance! Mouth sores, headache, sore eyes, food tastes yuck! |
| 7
AUGUST 2002 Home |
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Oh dear, the ache in the head, neck, back and shoulders is back. Obviously chemo related then. Will have to mention this to Charlie when I see him. Also I have pain in my fingers, all across the tops is numb and it makes typing really awkward. So is holding a pen, opening pill bottles....lots of things really! I rang about the numb fingers but apart from painkillers there is not a lot they can do. It's to do with the CHOP chemotherapy. They said to mention it next time I go and the dosage will be decreased as it's damaging the nerve endings. I hope it's not permanent that's all I can say. Most foods and drinks taste awful. I can't drink tea anymore which I used to love. Sometimes coffee tastes like dishwater as well and it must be weakly made, I used to love strong coffee but can't take that anymore. Foods I used to love, just don't taste the same. I love licorice at the moment as it tastes as it should do. Also fruit which I eat by the trolley-load, tastes weird sometimes. Nectarines are OK, grapefruit and oranges are out. Melon is nice. I get presents of fruit from people now, along with a bottle of Gaviscon from a friend, Anne, as well. Sounds an odd present, but so nice! I've never had indigestion in my life before, but I get it now whether I eat anything or not! |
| 11
AUGUST 2002 Home |
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Well here it is again, post-chemo blood test. My Aunt and Uncle are taking me again which is really nice. They usually go and have a coffee whilst I sit in the queue with my numbered ticket waiting to be called. Just like in the Deli Counter at the supermarket! |
| 13
AUGUST 2002 Home |
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So explain this one to me. I was shouted at for not saying that something was wrong. However if I do say about a symptom I am told I am whinging. How do I get out of this? How can I explain how I feel without getting shouted at? It's not easy when you can't say anything for fear of being shouted at. I really NEED to say how I feel about this sometimes, but people get upset. Who can I talk to?? Dealing with cancer is never easy, specially when you're in a vicious circle...... |
| 19
AUGUST 2002 Home |
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Oh dear, 21st is getting nearer (H-Day). I've just tried to check if my transport has been arranged. Was told to ring back tomorrow at 3pm. I think it's a bit late if none has been arranged, but I'll give it a go. Got no choice really. I was surfing around last night and found a new site about personal experiences of cancer. There was a section on having Hickman Lines fitted, most didn't like them and said it was unpleasant. Oh dear, now I'm really worried. I suppose like everything else I'll just have to take it as it comes. Yikes! |
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AUGUST 2002 University College Hospital, Mortimer Street |
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H-Day! It's here and I'm .... well, nervous! I arrived at 9:50am and went to the Day Room. About 10.30am Mick arrived to take all my details. He said they'd lose a star as it's supposed to be done within 30 minutes of arrival....tut tut! Blood pressure taken, but the machine went haywire and just kept pumping and then blew off my arm. I didn't know it was that bad! We tried three more times, all failed. Back to the old fashioned mechanical way! Spoke to the surgeon who would be doing the operation and his assistant, also the anesthetist More questions all the time. I was told it would be 12.00 for my op, this changed to 1.00pm then again to 1.30pm. I was then taken to my room. There were no spare beds on the ward so I had to go into a lead lined radioactive room, nice though, had my own TV, radio, fridge and kettle! Dr Albert took my blood, three attempts to find a vein. Now I'm here I really want this to work to save all this extra pain and hassle. Went down to theatre at 1.30pm and was taken to the pre-room. (I don't know all the technical terms). They checked my blood pressure and put a line in my hand. Found myself coming round in the recovery room at 3.45pm, with a view of a man with his bum on show! This was quickly covered up and I drifted off again. I was just pleased I was back in the real world again! I was then taken back to the ward. Charlie came in, his face was down and he looked so sad. "Oh dear, it hasn't worked. They tried twice and apparently I have kinky veins (no comments please!). Each time they tried it just came across one of the kinks and wouldn't go through properly. I was later to find out they'd actually tried three times. He said I was delightful which was nice. I don't always feel delightful as you've read! Although I didn't want it done, it was a real disappointment to find out it hadn't worked. Was prescribed more painkillers for the immediate pain, and also some for after chemo for the weird pains I get in my head, shoulders, back and top of my arms. Had to go and have an x-ray done to check no damage had been done to my lungs whilst trying to insert the Hickman Line. On the form it said pneumothorax, which was explained to me by the surgeon as a cut in the lung - oh panic time! (Did you know your lungs go up into your shoulder/collar bone area - no neither did I - until now!). Nothing was said when I came back so assumed it was all OK. 9.00pm is the best time to have an x-ray, no queues at all, just me! Saw a lady called Liz Simcock, who is the PICC (Peripherally Inserted Central Catheter to those not in the know!) line queen. This is a long tube that is inserted into your elbow and goes up your arm, across your shoulder, and down near one of the main arteries near the heart. She said we could try it tomorrow and see if I agreed. Again, nervous about it, but it was worth a try. She said it must be difficult, as I'm so upbeat and chirpy, that when I do feel down and want to talk everyone probably doesn't understand and tells me to cheer up. She's not wrong there!! Went to sleep finally at almost 3.00am and then woke again at 4.00am, 5.00am, 7.00am.....yawn...... |
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AUGUST 2002 Same place as yesterday...... |
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Liz came to find any useful veins, she found two in my right arm, and only one in the left. However, after speaking to the surgeon who had attempted the Hickman Line, he said he didn't want her using the right side due to the damage done during the op. This left us with one chance..... The procedure would be done under sterile conditions in my room with assistance from Nurse Jackie. She had a gown and mask on and, you know me, so was the radio. So Liz was there bopping to Blue on the radio, and I was too in the bed awaiting for it all to start. It was like a sketch from a comedy programme! I'd already had the local numbing cream on for one hour, so hopefully it wouldn't be too painful. She started and I concentrated on the ceiling and the music! It worked, it went in really well. When the vein was found it seemed to be a good one and now it just meant putting the dressing on and the holder for the line. This will stay in until all the chemo is over. It has to be dressed every week by a District Nurse. Had an x-ray to check the PICC was in the right place, wahoo...it was! Liz was really pleased and so was I this time! We shook hands and generally got excited about it! I would now be having my chemo the next day. Another stay in hospital but at least now it was all going the right way. Phew! |
| 23
AUGUST 2002 Same place, still there..... |
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Well Chemo Number 3 coming up!!! Bloods taken first, really nice, no needles........bliss!! Started this at 10.15am...... they had to get the red gloop as I call it changed from a syringe which is manually fed through the vein to a bag which is put on an IVAC machine (this automatically pump it into your veins through the PICC line). Finished at 1.00pm. I asked about the numb fingers, they haven't reduced the dosage as this won't kill the cancer cells so well. If it continues they may later, it depends. It will possibly get worse before it gets better, so if you notice any typos let me know! Also if it does disappear later, it will take a long time - there is also a possibility it will never disappear.....hmmmm! Having chemo is so much nicer now. No pain from the needles in between the knuckles or anything, no bruise...great!! Was given a big bag of dressings for the PICC line. Also a carrier bad full of drugs and tablets. I'm sure going to rattle this time!! More drugs than ever. On the way out to the car (no Merc this time, but a nice big Rover instead), I saw Mark, one of the Chemo Nurses from John Astor House. "Hi Karen mate, how are you?" "Not bad" says I, "and you?", "OK, all sorted this time - see you for the next lot!", "Sure will" says I. |
| 24
AUGUST 2002 Home |
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It's so nice to be home....the nurses and doctors were great, but it's not home is it. Also to be back to my wonderful double bed. I was scared I'd move around and fall out of the single hospital bed! Shame they don't have doubles! I'm covered in bruises, my arms, my hands, my Hickman Line failure area. I have two holes in my chest which are dressed and need to be changed every time I shower. I have six needle marks on my neck where they'd done during the Hickman Line op. I have two other wounds where the tape was holding the other two cuts together (they don't use stitches in this case) that look like burns. I have a cut on my mouth which happened during the op (I look like I've been hit with a brick!) and a cut under my tongue which was done during the op. Apart from that - not bad!!!! The delights of chemo side effects will probably start from today. Bertie came indoors and I called out to him. He came running up to me with his tail in the air...all happy to see me. He then didn't leave my side for ages. Of course, we had to go through the "sniffing the frame" all over again as well. Keep checking back to see what happens next in my chemo diary! |
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AUGUST 2002 Home |
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How do I feel? "Crap" is the only polite descriptive word I can use at the moment. Tired, my head, neck, shoulders, wounds, mouth, eyes, everything seems to hurt. It hurts to move so I'm trying not to too much. The PICC line makes my arm awkward to use. I have a bandage (well tubigrip) on it to stop the bionector (the bit that sticks out and chemo is put through and blood out) from flapping about. I'm terrified of catching it on something and having yards of PICC line everywhere!! |
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AUGUST 2002 Home |
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Bank Holiday - I seem to have missed so many now. We decided to go out for a ride in the country. As long as it doesn't involve walking too far with the frame I'm fine and love going out. We can get the wheelchair and frame in John's car which is good. (Thank heaven he has these 4x4's!). We stopped at a tea room near Pulborough (not giving you all the details as it'll be full next time we go!!). I walked from the car to the tea room and back (about twenty yards if that!) and when we got home I promptly went to sleep for three hours! Zonk! Just like that. This tiredness really gets to me. At the drop of a hat I'm asleep and no-one can wake me!! Several times I've found myself awake in the room on my own, even with the light out!!! |
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AUGUST 2002 Home |
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Was on my own this morning, everyone had gone to work. The cat's came in and visited a few times, specially for biccies. It was nice and I enjoyed the solitude for a while. Thinking.....the brain does that a lot now. Mind you because of "chemobrain" I can't remember things, so it's just like being a goldfish. A whole new world every 3 seconds! I tried to do some work on the website, but my fingers are worse than ever and I can only work in short bursts. Hence you only get emails in batches. I have to stop as I just can't feel the keys anymore. |
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AUGUST 2002 Home |
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Went shopping tonight. Borrowed a wheelchair from the supermarket. Saw my friend Sue, she said "you're looking well mate - less hair - but it's still there". She said she thought I'd be looking "manky" by now and was surprised by how good I looked. I think it was a compliment of sorts! People do stare though which I find really annoying. Yes, I'm in a wheelchair, yes, my hair is falling out, yes I have this thing sticking out of my arm, but once you've had a couple of quick looks - just quit staring OK!!!!!! I was always taught not to stare, so it's extremely rude to me. It's obvious what I've got and am going through, so don't make it worse for me. John says "chemobrain" has made me lippy (or was that even lippier?!?) and I tend to say what I think. Why not...we can't normally say what we think due to good manners. I'm taking my chances now.....!! SO QUIT STARING AT ME WHEN I'M OUT ALL YOU PEOPLE WHO DO IT!!! You make my little outings very depressing and I hate it. |
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AUGUST 2002 Home |
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Waiting for the District Nurse to arrive. I had a thought that it could be a male nurse, like in "Where the heart is" (one of Mum's fav programmes). Hmmm. Did some emails whilst I waited but fingers aren't too good today. Nurse arrived
at 3.30pm - not a male one though. Another Sue this time. She was going
to take off the old dressing on my PICC line and clean and flush it. I was nervous about the tape as I didn't want it to be like the shoulder, all sore and weeping. Luckily it wasn't for me!! Phew, something going right, that won't last! We went through the instructions from Liz (with handy piccies too!). Good job I'd seen the nurse do it at UCH before leaving too as Sue hadn't done one like this before. There are lots of variations. Trust me to have one they haven't seen! Well by 4pm it was all done, looking nice and new and feeling a lot better. I still didn't look when it got to the PICC bit in the arm though. I can't believe it's all the way from the elbow to the heart. Amazing. It still makes sleeping awkward as I don't like to lie on that side. It makes me nervous. |
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AUGUST 2002 Cubicle 10, Accident and Emergency Department Ashford Hospital, London Road, Ashford, Middlesex |
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Most of this I do not remember and has been passed on to me via Mum and John who were there - all night - with me in Cubicle 10 at Ashford A&E. Mid afternoon I had off pains in my back, felt very sick, didn't want to move, couldn't bear lights and felt generally awful. I went to bed at 6pm hoping it would go away. It didn't.... Mum came to see how I was, I was feeling sick, shivery, hot, tremendous back pain, couldn't bear lights near me. She phoned UCH and spoke to the "Emergency Bleep Doctor" as I had some of the "if you're sick call this number IMMEDIATELY" symptoms. He said to get me to the nearest A&E ASAP and he would call ahead and explain to them. It took me ages to get to the car, I couldn't bear being in a wheelchair and remember I had to stop every couple of steps because of the pain. This was REALLY BAD pain. I was put into a cubicle straight away and told a doctor would be coming to see me. They couldn't take blood from the PICC line as it required a Doctor to do it, not a Nurse. This would delay the tests so I said to take blood from the arm. I was in so much pain anyway I didn't care..... They took some history from Mum and John about the treatment I was having and tablets taking already. Said a Doctor would be coming soon. I was left on the trolley in the cubicle with one chair for them to sit on. FIVE HOURS LATER.....a Doctor arrives to see what is wrong with me. Takes more history and said the blood count was OK, did an examination (dignity out of the window of course as usual in a hospital). There were no machines for tea/coffee working. Mum is diabetic and had had nothing to eat since 6pm. It was now 2.30am. I had a chest x-ray and it came back OK. They wanted me to stay overnight for observation. I was left on the trolley ALL NIGHT. John had to drive to Maccy D's at Heathrow to get him and Mum a cup of tea/coffee. Meanwhile no one had come to see me. I was in complete agony, moaning with pain, no painkillers, I was crying my eyes out in agony and in the end cried myself to sleep. John and Mum heard the goings-on in other cubicles. One woman thought she was pregnant, hello, isn't this what Pregnancy Tests in Boots and a GP is for? One guy had constipation and had closer observations than me, and one guy had a rash after he fell over drunk. Meanwhile, I had "dangerous symptoms that required immediate treatment/observation" according to my Chemotherapy Booklet, and the Doctor at UCH and I was left alone on a trolley with no observations. At approx 7am the Doctor examined my back as this had caused most of the pain. I couldn't bear touch on it from the middle of the ribs to the lower back. He said I would need another x-ray to see if it showed anything. Then another Doctor arrived and said "you can get dressed and go home now, the blood count is clear". I said about the x-ray and he said "no, you can just go when you like". So no explanation as to what had happened, why it had happened, would it happen again. Nothing, zilch, zero!!! I had to call my Consultant about my Warfarin tablets anyway and mentioned this, she is to call me back tomorrow wanting more details as it shouldn't have happened. I could've died before they did something. I was given no painkillers, hardly any observations and no explanations. They did mention they did tests for meningitus as well. This can also kill really quickly. It's nice to know they're so on the ball. It would've been better to have driven the 40-60 minutes to London and be seen by someone who knows what they're doing. Both the UCH Doctor and we thought it best to get to the nearest Hospital. How wrong can you be?!!?!?!?! We hope it doesn't happen again (too painful and scary for everyone concerned) but if it does, you can bet your bottom dollar we won't be going back to Ashford A&E!! I'd rather take my chances and go to London. Their admin might be bad at times, but at least they know what they're doing when it comes to treatment of cancer patients. Oh, and as we were leaving, the guy came to take me to x-ray and he was told "oh she's not having it now, she's going home". Then the Doctor said, "oh, we found a note from the Doctor at UCH saying to contact him as soon as you arrived, but we've only just found it". As I said, hell will freeze over before I go back there in a hurry! |
