Lots to write on this entry with little time left (will become clear why later). Let me briefly reflect back on the last few days.
Had a very good weekend including a day out with the family to Warwick Castle. Monday pottered around the house trying hard to keep my feelings positive as per my new mission - had a great girly evening with my good friend chatting putting the world to rights. Got home and thought more about our previous conversation - lump in breast felt slightly bigger and noticed the skin around the lump was pink and slightly hot to the touch. I had also experienced pain in the breast over the weekend. I was previously told by the consultant there was no risk of further growth or spread but my nursing knowledge told me a different story. Had a very difficult night sleep that Monday night. 8.30am Tuesday morning called the breast cancer nurse. After a couple of calls it had been decided that I was to go into hospital to have an ultracound scan - not that the healthcare team was concerned (I was told) - more for my piece of mind. So midday I was promptly called in for my scan. The results blew me away - not only had the tumor grown 5 mm in width and somewhat in depth, but the tumor had also grown upwards towards the healthy part of my breast (hence the pink colour and change in the skin.) The radiographer immediately called the breast care nurse whilst I was escorted to the visitors room and offered a cup of tea. I called Ian as he was at work to inform him of this latest in the long line of disasters. By now my mind had lost all form of positivity - surely if this surgery hadn't been left for so long - or at least had the op on the original dates - this would not have occurred. The nurse entered the room and I stared at her in utter disbelief telling her how I was thinking and feeling. She did not disagree with these points and informed me of their complaints procedure. I was then escorted to the lounge area where I was told I would see a different oncologist at 2.30pm where decisions would have to be made as it was clear this could not now be left any longer. I felt very fustrated, extremely angry, lonley and isolated at this stage. I simply couldn't take in the fact that the delay of the op had allowed the tumor to grow as well as being told by the consultant I was not at risk from tumor growth or spread - despite me raising this concern directly with the consultant over the phone I was given reasurrance this would not be the case. These thoughts just kept going round and round. The nurse gave me information of their complaints procedure encouraging me to take this up. I called Ian again to update him - whilst I was speaking on the phone he said he was literally on his way to the hospital. We have a shared family car which I taken to get me to the hospital leaving Ian unable to leave work - until upon hearing of what was going on Ian's boss very kindly and quickly offered Ian a lift up to the hospital - felt relief and gratitude for this generous action which enabled Ian to be with me in half an hour. Seeing the oncolgist together it had been decided that the best plan of action was to start chemo now in order to shrink the growth of the tumor with surgery 6 weeks after the last chemo session. More disaster hit me when I was informed that due to the damage caused by the tumor to the healthy tissue I was unable to have immediate reconstruction. Why? Why? Why? - I wanted to scream. Why didn't they allocate the op earlier? Why did they leave this for so long? ARRRRGGGHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So, after taking bloods and having undergone a CT Scan, I left the hospital with my family again in absolute disbelief. Suffice to say I spent the rest of the evening not really caring from a meal and a large bottle of wine!
Had a phone call from the nurse the following morning to inform me that chemo was to start Friday at 9am, and the results from the CT Scan (which all the bad news we have had by now thought was negative and the cancer had spread) was actually negative - no spread. Bloody hell - what's this, positive news, someone punch me as I'm not sure what positive means anymore. My friend came over to see me and with the lovley sunshine was able to enjoy that day. Thursday now - mum and aunt came over again, had another lovley day in the sun, coffee and buns and lots of support. So, now at approx 23.24 on Thursday evening chemo starts tomorrow. Glanced earlier at the paperwork informing me of what drugs I am having in these sessions - not very appealing in the least, and to expect the normal side-effects of nausea and vomiting, hair loss and extreme tiredness, not to mention the many other side-effects. Now, trying hard to look forward, being positive I intend to enjoy the little time I have this evening before commencing on the not-so-nice stuff for a few months.
I will update as and when I can. Many thanks to all of you who follow this blog. Your supportive messages have been an immense strength to me, sometimes in my darkest hour.
xx
It never rains but it pours it is said. That is unless you happen to be us, in which case it never pours but it comes down like a tropical monsoon.
ReplyDeleteSo, hot on the heels of:
I strongly suspect that it is a cyst - (It wasn't)
The tumour is very small and is not likely to spread - (It did)
We're confident we can get the operation in on the 14th March - (They didn't)
We can now add:
'The operation is now on the 4th April but that's OK, the tumour won't grow in that time...'
...and, when Sian was concerned as the lump seemed to be getting bigger...
'We're not worried, a tumour will often get inflamed after a biopsy!'
The response to both of those is that the tumour HAS grown, nearly doubling in size in a fortnight, and all because of bad management in not getting Sian into surgery early enough and, with the examples above, a rather too casual approach to risk however small from the cancer surgeon. Consequently, the whole treatment plan has been turned on it's head and any choice Sian had has now been eradicated. The only option now is to start the chemotherapy immediately and then have the surgery in about 6 months time.
I have been writing this entry on and off since we have found out on Tuesday that the tumour has grown. Since beginning writing we have, at last, had some good news. As part of Tuesday's appointment, Sian had a full body CT scan to check if any secondary tumours had developed (door, horses and bolts do come to mind here). To be honest, with the constant influx of bad news throughout this saga, I was quite expecting to results to show that there was at least one secondary tumour and wouldn't have been surprised if there were more. However, in complete contrast to norm, the results have come back a negative meaning that the cancer is still localised - a big relief!
(BTW, if any of my line management are reading this, thanks once again for pulling out all the stops to get me up to the hospital to be with Sian. Sian had the car to get to the hospital meaning I had no way of getting up there when the news was given - my boss arranged with our overall team manager so that he could drive me up there himself - as I've always said, it is reassuring having a supportive employer in all this and this day they surpassed themselves!)
It is now Thursday, the day before the first chemotherapy session and I am very nervous about it. Apart from the fact that I am absolutely rubbish when it comes to needles and it will be a challenge to stay vertical, there are so many potential and nasty side effects to the treatment and nobody will know which will affect Sian once the treatment starts. The two most common are pretty much guaranteed though, the nausea (which hopefully will be kept under control using drugs to counter-act it) and the hair-loss. I know the first of these worries Sian the most, she doesn't do 'sick' well. Fortunately, I do 'bald' well so can offer some tips for that side of things (suitable polish, etc!!)
The next few days will be challenging. How will Sian react to the chemo? How will I react to the sight of needles? And most importantly, will Barnet finally win a game under a new manager?
The answers to all these questions and more to come in the next exciting episode!