I apologise in advance for my rambling on but I've never written a blog in my life. Hope this one is of some use to someone...
Well here I am sat sitting at my pc wondering about nothing and everything. What do you do when you've been told that the benign tumour, which was removed from your thigh only 19 days ago, is in fact a nasty and very rare type of soft-tissue sarcoma? how are you meant to feel and what are you meant to think? I don't know but I have this urge to write about it.
My journey started almost a year ago back in March 2010 when I discovered a small pea-sized lump in my right thigh. I can't remember if I was lying in the bath or my bed but only by chance I discovered it whilst scratching an itch. It shocked me at first and I played around with it. It moved about and was in my muscle. I did nothing about it for weeks. Thought it was a fatty lump or that maybe a result of banging it ages ago on my bed post. I decided to get it checked out in April or May and was promptly told it was probably a fatty lump and that it was most likely nothing but to keep an eye on it. Well, i did keep my eye on it. Couldn't stop fiddling with it in fact. It was most certainly still there and I felt it was getting slightly bigger so I went back a month or so later to get a second opinion. I saw a different doc this time. She had a prod and said it may be a cyst but nothing serious but she would send my case on to a consultant at my local community hosp. It took a couple of months to get that appointment and when I got the appointment letter in september, the appointment was for 2 nov. I guess it wasn't that long a wait but when you're left with puzzled expressions and 'hmmm, not quite sure what it is' from the professionals, it felt like years! So, I saw the consultant on the 2nd of nov and again I got a 'not sure what it is. Will send you for an MRI scan to investigate further'. I honestly thought I'd go there and he'd tell me it was a cyst and all my worrying would have been in vain. I remember leaving the hosp feeling scared and confused. I then wandered around tesco's in a bewildered state of mind, feeling zombified. After doing that for an hour I left the shop empty-handed.
Things have moved fast since that initial consultation. Well, in my mind they have. I know people mean well but you do get tired of hearing, 'well, if it was serious they would have had you in by now and started treatment etc, you would have been in straight away, or within days.....' So when I got a letter a week later on the 10th nov (my birthday) to have an MRI at the general hosp on the 17th nov I started to panic. I had the scan and still no results, so a week later I was called back for an ultra-sound scan. Couldn't stop worrying about what it might be. What a busy month. My brother turned 30. I turned 34 and my sis turned 35, and my good friend Gladys, who had lung cancer, passed away in her sleep. And then it started to snow....a lot!
Because it snowed a lot I never got the letter from the Royal Marsden Chelsea asking me to attend an appointment to see a specialist on the 10th dec. Instead I got a call from the professor's secretary on the 8th nov asking me if I had a scan and can I come in in two days time. I had never even heard of the RMH. And up until then no one had mention the 'C' word or anything about tumours etc. This was all getting too cryptic and overwhelming for me at this point but I re-booked the app for the following week. My mum and god-father came with me. And he drove us to london, in the snow, with a rattling boot door and a windscreen that wouldn't de-mist...
They are amazing at the RMH! I saw the senior surgeon and my brief 3 min encounter with him left me feeling relieved. I had a tumour, but it was benign. He couldn't emphasize how benign it was if he tried. I was offered a needle biopsy but was told that they would have to remove it anyway (because it will just keep growing) so i may as well just go straight for the surgical biopsy. I do remember him saying that after surgery they may go back in and remove some more tissue just to make sure, but none of that sank in. All I could hear was the word 'benign' so anything else he said didn't matter. So, I agreed and had it removed on Jan 25th 2011. It's now Feb 13th and 3 days ago I went back to RMH to have my wound looked at. It's healing fine. Scar's about 8cm long. I wasn't prepared for what was to follow. I purposely left my mum sitting in the waiting room, thinking I would be told it's all fine - off you go, but I immediately knew something was up when the nurse disappeared after saying that a registrar would come and tell my what the results where, only to re-appear ten mins later with 'actually the professor is on his way in and he'll speak to you instead'!!! The 20 mins I sat there on my own in that room waiting for him were possible the worst 20mins of my life.. I sat there chanting over and over again that I'm ok, it's nothing, don't be silly, he just wants to check out his handy-work for himself, but my fears were comfirmed when he burst into the room, gently placed his hands on my shoulders, looked me straight in the eye and said, 'Darling, I'm afraid it's a nasty one and we need to go back in there and remove some tissue'. i just burst into tears. I asked several questions about it to him and his colleague and got different answers each time. It's all very confusing. It's a very rare soft-tissue sarcoma. About 3000 people get it a year. I still cant pronounce the name of it properly. Rhabdomyosarcoma. An ugly cancer with an ugly name to match. They gave me a copy of the histopathology report. I dont understand much of it but the things they highlighted sound scary. Spindle-cell Rhabdomyosarcoma. Material has been sent off to exclude angiomatoid fibrous histiocytoma and aveolar rhabdomyosarcoma. It all sounds foreign to me!! however, I'm beeing looked after by one of the world's top sarcoma surgeon's at one of the world's best cancer hospitals. I'm scared beyond belief and I dont sleep much these days. I've still got 9 days to go til my next op and then I may need radiotherapy and maybe cosmetic surgery to fill in the dip that will be left in my thigh after a 2-3cm margin of tissue is removed. Date of next op: 22nd Feb 2011. Wish me luck!!
