Like all, I feel a need to "log my journey" and with one blog nearing an end (Move More for Macmillan), I feel the need to keep writing from time to time so I have unearthed what I wrote almost a year ago at the beginning of my journey of discovery. I must remember the toast story that comes next....and then I am afraid a break until I start my new chapter with the Royal Marsden next week (31st May 2012): :
So for 5 months the doctor’s say “don’t worry, it’s nothing”.
It’s then the tube up the nostril and down the throat and the consultant says to you “say haaaaaay”
“hay”
She doesn’t let you get away with the shorter, less uncomfortable version
“say haaaaaay”
“haaaaaay”
Off to the Ultrasound department next to make and appointment and a lady that kept appearing in any room or corridor that I seem to go into to or travel down was there at the reception. She would be doing the ultrasound and told me not to worry about my appointment time, it shouldn’t run late, only 2 others in front of me.
Arrive early and this doctor sees me and rushes me in before anyone else arrives and in turn notice that I have well and truly been jumped to the front of the queue – the sign clearly says, if someone has been waiting less time than you and gets called first, they are probably seeing another doctor / different team……the truth is now out!
For that favour I bought maltesers to deliver on the following appointment. This one doesn’t go so well, it’s not “nothing” and with lymphoma being the assumed verdict, biopsy needed first but via the CT department with instructions to smile sweetly at them to hope they will rush through an appointment.
Hmmm….bombshell and smile sweetly…they really don’t mix – I managed what I thought was an attempt of a smile – however, I was in fact grimacing at the receptionist before crumpling into sobs and being taken through the door for a more private session to make my appointment. Who should be there – the lady that is everywhere! I thrust the maltersers at her though my tears….these are for you…..FUN TIMES written all over the box….yup, fun times indeed.
She performs the biopsy – you do want her on your darts team in the local pub by the way – followed by a huge sigh of relief that she didn’t hit anything she wasn’t meant to (only the jugular and blood vessels in the way!!), she gives a huge BINGO on one of the “hits” as she points and shoots what can only be described as a staple gun into one of my neck lumps. Then the question – do I get stitches or just a big plaster….the plaster was so big I couldn’t move my head from side to side.
Sainsbury’s – you find yourself assessing every person you see going about normal day to day chores….but are they OK? I got caught trying to test the ripeness of a pineapple – the first one I picked up, the middle leaf wasn’t budging so the next attempt I pulled with a bit more force and nearly fell over as it came out with extreme ease – yup, that one was ripe! BUT….I had been seen by a lady that started laughing but I was immediately drawn to her husband….no, not in that way….he had a plaster on his neck – hooray, another person with a plaster! So I immediately said I had had a plaster similar to his.....”they are testing me for lymphoma”…there, it was out, I had happily smiled this sentence to a total stranger…who then promptly held the machine to his throat so he could be heard through it….he has most of his throat removed and if he hadn’t, would have been in a box 12 years ago….with a big smile he walked off thinking better of doing my trick of testing pineapples for ripeness, he half expected the “you’ve been framed” camera to come around the corner.
CT Scan….oh my goodness, the sleepless night ahead of this…..my stomach got stuck in the ring! Now, I’m not that big but as one very good friend texted….just keep eating lots of chocolate and crisps in anticipation of the key symptom – mass weight loss…….I cannot quite stop myself saying “I wish” every time I hear this!!! The other theme during the night before the day of……was the bit where it says you need to hold your breath for 20 seconds….I couldn’t, however hard I practised.
So, the day arrives and there is only one thing to really worry about……..they make you drink 2 beakers of water and tell you that if you go to the loo in between you need to start again…..so how on earth are you meant to keep extra still whilst being scanned if you are having to jig around to try not to think about being DESPERATE for the loo! Not to worry, they do let you go to the loo first – phew……and then back to the waiting room to get changed into the gown.
The day of my biospsy I had sat in the waiting room and there was a Spanish looking lady looking immaculate with a white flower hairband in her silky black hair, the most stylish of clothes and beautifully patterned tights……I then cry in panic when she is called through “you can change into your robe now”…panic over and she arrives back, completely calm and collected and still looks SO glamorous….the gowns are horrific, that is not easy to do…..but I did remember her lovely little black slip on shoes….how sensible….and thank goodness as once I had changed into my gown, I could easily have arrived in my scruffy trainers or my not so scruffy cowboy boots – now neither of those would have been a good look with the gown….so thank you to that lady for my lesson in how to dress for hospital!!!
CT done and yes, the saline solution really does make you think you have wet yourself but trust the nurses….you don’t….back to the waiting room to check no allergic reactions. My right arm was getting a bit in the way as I couldn’t bend it….well I could by my mind said I couldn’t as I still had the canula hanging out of it….so straight armed it was (with head to angle so I didn’t quite catch a glimpse of it although I was intrigued!). Two ladies are not sitting there, one is now fine, only a couple of cysts on her liver…no worries, just waiting for bleeding to stop from her canula being taken out….and another lady….very worried – her trip to the optician had not quite gone as planned….they discovered bleeding behind her eye, so there she was in the CT scan waiting room, with me, and the lady that was fine! The lady that was fine said that she knew someone that had eye cancer and was fine once the eye had been removed……the eye lady gets taken away for her scan….the fine lady continues…..until a couple of months later….when she died!!!
You feel strangely “fine” when you are in amongst these people.
Consultant time again and the lovely smiling nurse….the first time in the waiting room she had shouted out my name and I heard myself saying “HERE” in just so loud a voice with my hand up in the air….it was like being in the beer garden of The Bankes Arms in Studland when your food order is being brandished around looking for the rightful owner. The second time, a much quieter call and this third time…..just the look – I have to look behind me and then point at myself to get the nod that it is me she has come to get….then the call from the second waiting room (the hospital holding pattern – a bit like coming into land at Heathrow)…do you want to come in……NO is my response but I go!
Still no questions as still nothing definitive apart from it is definitely lymphoma we are dealing with – my only question I could think of the first time was all based on “ifs”. If I have lymphoma and if I have chemo and if my hair falls out and if it grows back again…..do the greys come back through first? They still didn’t answer, just an unsure smile that did turn to laughter after when they saw I really was not fussed by this……..what else are you meant to ask with no time to prepare….if you had tried to prepare by using internet with inconclusive information, you should have been dead 6 months before anything appeared!
We chat, I am being referred to everywhere else, the consultant is trying to move other people off lists over the phone so that I can be seen before then but then thinks better of it and thinks she had better check in person first in case someone really does need that appointment as much as or more than I do – wise move! She really is thorough though and is going to physically hand me….I’m not just another blue file full of notes….but she also hears “maltersers”….and books me in for another appointment “just to check I haven’t fallen through the net”….or did that mean “we want maltesers too?!”. Well maltesers definitely deserved, I’ll just try to give these ones rather than thrust them!
How have I felt in between times? Sometimes I have cried…a lot….but not really sure why as I don’t feel angry, don’t feel sad, not that scared….yet….a knot in the stomach from nerves? Stress…no, not stress… But I feel fine and work know and also that they can ask me hay, how are you today….fine is my usual response….because I feel fine…..welcome to the bubble world!! Oh, and the dog doesn’t like it if I’m upset!
