Cancervive diary
The Big C3rd may 2007
home
I got a letter this morning from RNOH saying they didn't know what imaging test I was to have, but when it was investigated and they knew they would contact me again by letter 4-6 weeks prior to the actual test.
4th may 2007
home
Another letter from RNOH. This time to tell me I was to have an MRI scan and the date was.....you're never going to believe this....but it's....8th May 2007. The Tuesday next week after a Bank Holiday Monday....
Now this is good, apart from....transport....my big bug bear problem. So I tried phoning and got nowhere. I've tried phoning them many times before and left messages and no one gets back to me. So I emailed instead.
It worked....!!! My transport has been arranged for Tuesday and I will be on the way to Stanmore. Phew that's a BIG relief.
Phew something going right for a change. I've had a nightmare few weeks and the painkillers don't always help......
8th may 2007
rnoh, stanmore
I took the x-rays back with me to RNOH. At least I wasn't trusting it to the Post Office. When I've sent things from our local PO first class it's taking 11 days to arrive, or not at all which is more worrying. I've changed PO's for now to see how it goes.
Anyway I spoke to Reception and was told to take a seatl. It was a busy time and loads of people were already there but I managed to get a seat. Most people came in and sat down and waited.
Apart from one young fella. He came in, sat down for 10 minutes and then got up to complain that he'd been waiting too long. I ask you, 10 minutes...! By this time I'd already been waiting over 1.5 hours and still no sign of a scan...!
The annoying thing was the Receptionist went to check and then came back saying "10 mins to wait and it's your turn". Now how can that be when he turne dup 1.5 hours after me and my appointment was obviously before his?!?!?!?
More waiting time for me then.....argghhh!!! I eventually was called and had to go outside to the mobile scanner again. I thought even after all this time surely the machine was fixed but it turns out they've had a new scanner put in place but it's not working yet.
I eventually got up the steep steps one at a time and sat down whilst the Radiographer set up the machine. It didn't take long and I was then called in and laid down on the bed. I had to move around a bit until the legs were in the right place. It's a fine art!
Music was on and she asked if I'd like it on as she'd have to increase the volume (those of you who've had MRI scans know how noisy they are!). It would be nice so the headphones were put on and she left the room.
"The first scan will start now, you will feel the bed move, but don't worry". I wasn't worried.....I'm a veteran of scans remember. Between them and CT scans I'm almost at No. 40 now.....scary huh! I wonder how much radiation the body can take through those without causing more problems. Bearing in mind that the reason I'm there is for a cancer in the first place...
I was listening to the Kaiser Chiefs (my current faves) plus Razorlight and Simon Mayo in the afternoon.... then I sort of woke up... I'd only fallen asleep in there. Now how can you fall asleep I hear you say....with that noise. But I did....I must've been real tired or so relaxed...one of the two.
The sleep pattern has not been good lately so perhaps it was a combination of the two. Great though!
More probs with transport when I got out in that the Receptionist told me they'd all gone home and I was stuck at Stanmore - miles from home.
After a few phone calls trying to track them down and them closing at 4.30pm when it was now 5.05pm she was getting nowhere. When looking up another number the phone rang and it was Cameron...my driver...looking for me to take me home. Yippeee...!!!
So off we went to go home. The other people in the car, Sue and Roy, lived in Brighton. I did wonder if I was going home via Brighton but they decided to drop me off first and spoke about stopping at the Chippie before they went on their way!
9th may 2007
home
Trying to sort out the Outpatient Appointment and transport for the results now. It was going to be a June date but Chris managed to get me in before then so I'm off on the 30th May to find out. Fingers crossed everyone!!
10th may 2007
blood clinic, ashford hosptal...again....
Yes I'm at the Blood Clinic again. I tried to make an appointment at the GP's but as usual, there are NO appointments left at all. You can't get one there for love nor money sometimes.
So John was going for a Blood Test too so it wasn't just me this time. Two attempts with a huge elephant needle later and I had matching cotton wool balls taped to my arms. At least it was only two this time... last time it took 30 mins to get the blood out of me.
I wish they would invent a tap to get to the blood, less pain for me, and easier for them to get it...!
Billy Blood Drop and Betty Bone Marrow
Check out the National Blood Service and make a difference!!
http://www.blood.co.uk/index.html
I've had another idea whilst surfing around. Every now and then I'll throw
in a good link for you to check out. This time it's:
Amateur TransplantsTwo real life Doctors, who sing ultra-sweary and totally hilarious songs, mainly relating to the medical world of course! Check out Dr Adam Kay and Dr Suman Biswas at: The songs are at http://www.fridaytowers.com/fitness/listen.php (featuring the ultra-sweary London Underground song)....excellent!! You can buy their CD for the princely sum of £9.99 with 10% of all proceeds going to Macmillan Cancer Support. |
30th may 2007
RNOH, STANmore
Nicki phoned to say she was picking me up, so at least I knew I was going which is always a good sign in my book - you all know the transport problems I've had lately :-(((
There was loads of traffic and she phoned to tell me she was going to be later than planned but was still on the way (well sitting on the M25 anyway!). So I made a coffee and waited watching daytime TV (what a strange bunch of people there are on daytime TV!).
Nicki arrived and we were off. I had the whole minibus to myself and sat as co-driver. It was easier to get in as there was a step up which helped.
We met some traffic on the way but nothing serious and arrived at 11.30am - 10 mins after my appointment time - but wow - was there a lot of people there at the Clinic today. Loads of people standing around and drinking coffee.
I met a lovely woman who was there with her sister. Her sister had been told she would never walk again and be in a wheelchair. However after seeing goold old Mr B, there she was walking to x-ray!!! No one else would do it apart from him. He's a good guy is Mr B!!!
Sadly he wasn't in clinic today so it'd be a registrar to see instead. I had a long-g-g-g-g-g-g-g wait. I'd been there two hours - was told an hour ago that it'd be 30 mins more! LOL!!!
I went up and asked politely, where I was in the queue as it was an hour ago I was told 30 minutes and they said they couldn't find my scans. I'd taken them with me when I had the MRI scan so I was CERTAIN they were there somewhere. I think they need to put a beeper on certain files so they don't keep getting lost.
Eventually my name was called and in I went with Doctor James. He'd sat down and started talking before I was even in the room! There was a lady in there too and she introduced herself as a student. Luckily I had no objections as it had already been decided that they were there!!!
I sat down and he said that the MRI was fine. It was still showing as there (as I've been told before) but not spreading. This is good news!
I mentioned the increased pain and aches and soreness and he said it didn't show any inflammation there so it is neurological radiotherapy damage. This is not a total surprise as I've had problems ever since the radiotherapy/chemotherapy in many different ways.
He said he would refer me back to the Pain Clinic for help with the pain. I mentioned I'd been before and had Gabapentin (which is an epilepsy drug - I'm not epileptic - it was for nerve pain in my case). They took me off that a while back.
After that, he asked if I had back pain and I do get lower back pain, the spasms are really strange sometimes and of course, painful. He would also send me for gait physiotherapy. It makes me walk funny (no comments please!) with bone pain in the left leg and achilles tendonitis in the right foot. What a mess it sounds! Oh well, c'est la vie as they say.
Just got to wait for Appointments for those now then I suppose. Also made a follow up appointment for Stanmore too. I prefer Bolsover Street to be honest, but she didn't give me a choice - she seemed very confused and didn't really listen. So much for the caring side...!
Now, what site shall I share with you this time? Well it's a bit of a blatant self plug for our User Partnership Group - so here goes....
USER PARTNERSHIP GROUPI belong to a local User Partnership Group with Macmillan and the Cancer Network in our area. We've recently got ourselves a website so check it out at: www.tactusergroup.org.uk If you'd like to join us or for further details contact us using the email address on the site, or email me here at the Furry Monkey. |