I've not updated my blog since last Friday simply because I was too tired each day after getting back from various appointments, and some days I was just too uncomfortable to sit at the PC for any length of time.
So, here's where I'm up to now.....Monday went off to the first Radiotherapy appointment (1.10pm) at St Thomas'. Rab came along with me which was nice, I'd already decided to go on my own but he said he wanted to come and had taken the day off work so I gave in :-) Lots of sitting around and waiting then more chatting about the treatment, side effects etc then finally the first treatment takes place.
After that have to sit and wait in a different area to collect Chemotherapy medication - by 4pm both of us were getting hungry, grumpy and tired. Finally got seen around 4.30pm - more chatting about the side effects and then eventually off to another room to be issued with the Chemotherapy medication - 70 doses (140 tablets) over 35 days of toxic poison....lovely :-)
More booklets to read, warning signs to look out for, a special card to carry in your purse which warns health staff that you are toxic (only joking, it's to warn them that you are on Chemo in-case you collapse somewhere during your treatment period).
So eventually we get out of the hospital at 5pm and home just before 6pm. Tired, hungry and irritated that it's all taken so long.
Tuesday........should be quicker I think before going ...hmmm - not really. After 2nd Radiotherapy appointment they tell me 'You HAVE to see Clinical Radiotherapy staff every Tuesday to review your treatment'....I remind them it only started yesterday and to be honest nothing has changed overnight! However I 'have' to see them so more waiting around, more chatting, more discussing side effects and when to contact hospitals/medical staff/999 etc....finally escape around 4.30 and arrive home just before 5.30pm - again tired, hungry and irritated that it's all taking up so much time at the moment.
Wednesday - MUST be quicker today eh....Well it probably would have been except I wasn't feeling well at all. Had a dodgy pain, odd rash and some small sores appear around the site that Radiotherapy is concentrating on at the moment. Spoke briefly with the Radiographers who decided they weren't happy with it - however we proceeded with 3rd treatment and then I had to wait to see Clinical Radiotherapy staff again. Actually wasn't so bothered by this today as was feeling quite unwell anyway and it made sense to see someone before leaving.
Saw Cathy, Radiotherapy nurse who confirmed that she also 'Wasn't happy with this at all' and decided to call down the Registrar from Guys hospital to have a look and decide what to do.
Senior Registrar arrives about an hour later on the bus from Guys :-) She's lovely and explains that in some rare cases (*sigh*) Chemo combined with Radiotherapy can activate the Shingles/herpes zoster virus and this is what they think has happened. So I'm thinking 'Oh ok, that's not so bad then?'.......WRONG!
It's so bad they've stopped my Chemo treatment and it will have to be reviewed next week. Apparently it's too risky to take Chemo with this virus because it can cause a type of blood poisoning and organ failure - so Chemo has been stopped, for now.
I'm now on a different type of drug (anti-virals) to try to get the virus back under control but she has already warned me that if this doesn't happen rapidly then the Chemo is not an option any more.
Pass me that brick wall so I can just smash my head into it at full speed please.....GRRRRRRR!
It feels like every time I get my head around doing something, it then bloody changes and I'm taking one step forward to two steps back all the time.
I didn't want the Chemo in the first place but they insisted it was essential to reduce the size of the tumour and to mop up any loose cells that may be heading to new resting places (mainly they are concerned about the liver/lungs next)....So, I eventually decide they're right and I have to take this blasted toxic stuff that will gradually poison me over the course of 35 days - in order to give myself maximum chance of recovery - THEN 'Sorry, you can't have it'.....Arrgghhhhh !!!
Thursday and Friday were both much quicker appointments. Both days the Radio was booked for around 11.30am and I was back home by 1.30pm.
And so ends the first week of treatment :-)
Will update next week as things develop.
