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| Appointments: | 01-Jun-02 | 12-Jun-02 | 14-Jun-02 | 20-Jun-02 | 25-Jun-02 | 26-Jun-02 |
| 01
JUNE 2002 The National Orthopedic Hospital - Stanmore, Middlesex |
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I had no fears about the CT scan as this didn't involve needles and I would not have to do anything apart from lay on a table whilst this machine scanned my chest. The needle biopsy however, was a BIG concern of mine. The idea of a needle being inserted in my tibia when I am fully awake terrified me. I HATE NEEDLES and this was scary! Everyone says "oh don't worry, it's not that bad" but it's OK for them to say, it's not them having it done! However they put me at my ease and explained what would be happening. Again I had to sign a consent form; it feels like you're signing your life away. I was given a cuddle by the surgeon and told they would look after me and I would be fine, not to worry. I was given a local anesthetic and they talked to me every step of the way (no pun intended). I explained I was a coward and had been worrying about it all week. At the end of it, I was told I'd been very brave, as it had been known for people to scream and shout and generally panic. Felt better about that! I'm not such a coward after all. |
| 12
JUNE 2002 Park Street, London - Mr Briggs (again!) |
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Mr Briggs said that the surgeon at the hospital said I'd been very brave and was not as much a coward as I thought which was nice. He said that the results showed that I had Non-Hodgkin's Lymphoma. It was localised in my tibia and was malignant. This is not what I was expecting to hear at all. Very frightening and very real. He referred me to the University College Hospital to see Dr Anna Cassoni. One good thing was that I would probably not need the operation at this time, but would need chemotherapy and radiotherapy. Take away one thing and replace it with something else, which to me, seemed just as bad. |
| 14
JUNE 2002 University College Hospital, Rosenheim Building - London - Dr Anna Cassoni |
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Consultation meeting to discuss what happens next. The further down this line you go the more real it seems, but it's also not real if you see what I mean. I'm in a parallel universe and it's not happening to me. That's what you think and it stays there. At the same time, you realise it is VERY real. Dr Cassoni explained that more tests are required to "stage" my Non-Hodgkin's Lymphoma. All Lymphomas are staged to see where they are and what sort of treatment is required. She checked all my lymph nodes and asked about symptoms etc. Strangely apart from the pain I hadn't had any symptoms. This is unusual. Also something else, my Non-Hodgkin's Lymphoma was rare as it was localised in my bone and not in my lymph nodes. I have read this is only in about 3% of the population of people with Non-Hodgkin's Lymphoma. The full title of my disease is a Large B-Cell Primary Bone Non-Hodgkin's Lymphoma. The tests were to be a CT scan (another needle), an ECG (to check my heart was working fine and could cope with the chemotherapy), a blood test and a Bone Marrow Aspirate (not looking forward to this AT ALL), and also a MUGA scan and a PET scan. At this point, feeling like a human pin cushion and fed up with being stabbed and prodded it was getting to me. I wanted all the tests to end. Get on with the treatment instead. However, I've since found out that NHS patients wait for an average of 20 weeks for an MRI scan, so to have mine in days was a bonus really. I think! |
| 20
JUNE 2002 University College Hospital - London |
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Arrived at 9.30am and was sent to Mortimer Street. After being sent to three different departments it appears we have been sent to the wrong place. I'm fed up with being pushed from pillar to post and it got to me. Tears streaming down my face as I was pushed in a wheelchair from the hospital to the car park. I'd just had enough!!! Got to the right hospital and had missed my CT scan appointment. Luckily they could give me another appointment slot. I had to drink some white gloop and wait for an hour for this to go where it was supposed to. I had to fast before this and in the end didn't have any food for almost 24 hours!! Not as planned but it happened anyway! Had an ECG test which - thankfully - didn't involve needles of any kind. Yippee!!! At last!! Blood test was fine, another needle but not too bad. Next was the Bone Marrow Aspirate. We were left in the Hematology Department for 1.5 hours waiting for the Doctor. Heaven knows how long we'd have to wait if it was NHS! I asked how long this was to take. The nurse said about 5-10 minutes once the anesthetic had worked. An hour later I was still there. They couldn't find the right place in the bone. The needle has to go into your hip/pelvis bone and they take a part of the bone and also your bone marrow. This is the most extremely painful test I've had in my life and made the needle biopsy a doddle!!! It got to the stage where the Doctor said if it didn't work the next time he'd have to stop, as it wasn't fair to me, or them. I'd had the maximum anesthetic already. He tried again and it was extremely painful, he asked if I was OK, I said "is it working?" and he said "yes". Hooray - "It hurts like hell, but as long as it's working just keep going". I left the impression of my nails in the side of the trolley/couch! The Doctor said he was sorry and didn't mean to hurt me, and that I'd be black and blue all over once he'd finished. He wasn't wrong there. I had huge black bruises all over my posterior and they were still there over three weeks later!!! My bones hurt to sit on and I just couldn't get comfortable for ages. My bone still hurts even now almost two months later. |
| 25
JUNE 2002 The P.E.T. Centre - Harley Street - London |
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Again I had to fast for this test 6 hours prior. No problem, I was a bit nervous to eat anyway! More medical details taken and 1st injection given (there would be two). I had a blood test to check my sugar levels were OK. I was informed I may need a Valium, and then she said, "it doesn't look as though you need one, you seem very calm already". My face never gives away my fear or my illnesses, never has done never will I suppose. I was then given the radioactive injection and was left in a nice dark room, again with "chill out" music playing. This was for an hour so that the gloop could get around my system. The hour went quickly and I was then taken to the PET scanner room. I had to lie still, and was enclosed in a Velcro strap (which made me feel like a turkey in an oven or something similar). This was to take 2 hours. It was quite cold in there but this time, sadly, no music. Just the sound of the air-conditioning machines running. I was told that I could have my MUGA scan on the same day, as it won't affect anything, so on to the UCH, Mortimer Street. Upon arrival I was put in a long queue. Eventually my time came to have the injection, I said I'd already had one that day and they asked what for. Upon telling them, I was asked to leave the Nuclear Medicine Department immediately by the nearest lift and to not go near pregnant women or children for four hours. Scary huh!! Apparently the radioactive gloop I was injected with was still active and was playing havoc with all the machines I'd just passed. It could be picking up my radioactivity and not the patients!! I had to go back the next day instead. Arghhhh!!! |
| 26
JUNE 2002 University College Hospital - Nuclear Medicine Department |
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Saw Dr Cassoni and also Dr Charles Gillham (Charlie). The PET scan had showed up something in my left shoulder and right hip, which they couldn't identify. I would need another bone scan. My chemo starts Friday, they wouldn't delay that for the bone scan result as it wouldn't change between now and then. |
