The end of my world - thats how it felt. The result of the appointment I had on Friday left me feeling with words that I cannot even begin to describe.Was ushered in over an hour late, again, with the consultant and cancer nurse talking openly between themselves and us as still no date for the op had been forthcomming. Discussions included trying for Monday or Wednesday this coming week by cancelling clinics and other patient's surgery to accommodate me - at this point I was happy to go along with this as I completely understand the politics and red tape behind planning patient's care. So, as they noted my mobile number I was promised a phone call during the afternoon to inform me of a date as this was still being worked on. I didn't wait too long for this call - the cancer nurse who called left a voicemail informing me that indeed they did now have a date for my op - on the 4th of April. In disbelief I just stared at the phone. Then the landline rung and it was the cancer nurse who rang to ensure I had recieved the voicemail on the mobile. I felt fustrated and cross at this time and spoke to the nurse of how this news had left me feeling - I then spoke to the consultant as I was concerned that leaving an op for this length of time would lead to a higher risk of the cancer metastasing to other organs. I was reassured that this was not the case - but as I think back this was also the consultant who on the initial assessment informed me that the lump I had in my breast, in his opinion, was classed as a "strong suspicion" of being a cyst. So, my apprehension was not, and has not been put at ease.
It was during this appointment I enquired - again - that as I am taking a hormone contraceptive pill do I continue with this as I was aware this could encourage the growth of the tumour depending on whether this was oestrogen positive or negative. I was then informed after the nurse glanced at my clinical notes that indeed the tumour is oestrogen positive - meaning that the pill should have been stopped as soon as this information was available (and this info has been available for at least 2 weeks). As a consequence of this it appears I will have to go through other courses of treatment in addition to everything else - possibly for up to 5 years. Great - just what I need - to have learnt that I have actually been 'feeding' the bloody tumour in the first place is not really the best of news, then to immediately stop and find an alternative long-term contraception, begin menstruation now and then have to enter early menopause due to effects of chemo, as well as being told that my op is now on the 4th April has just been too much. Not coped with this at all very well. Was in a very dark place Friday evening that I never wish to visit again. Weekend was just about bearable - but still feel like I really don't know anymore. Don't really know what to say now - no quirky words, just feel blank. Of course, I will write again once I can gain a sense of anything that has happened since Friday.
NOT happy!
ReplyDeleteWe saw the cancer surgeon this morning, hoping that, finally, we would get confirmation that the surgery Sian needs would be going ahead this coming Monday. The surgeon talked about changing various other patients and clinics to accommodate Sian's surgery but, frustratingly, at that point was unable to confirm whether Monday was possible or not. The surgeon and the care nurse made sure that they had contact numbers for Sian and said that she would get a call later in the day with news.
Well, that news has come and it is not good. Sian has now been given the date for surgery as 4th April - over three weeks away.
We know what is involved in the surgery and we know the ongoing treatment that will be needed. We've been waiting weeks for a date to be confirmed, initially the 21st March was banded about, then 14th March. To now find it is now not until April has left us both feeling very angry and upset. As much as I wish Sian didn't have to go through everything, I realise that it is inevitable and just want to get it done so we can move on. This has been known about for weeks - why has it taken so long? Consequently, we now have three weeks of waiting and worrying about the surgery. There is also the question about this delay taking the treatment outside of government guidelines, another avenue to explore should we take this further.
I does seem that whatever happens, if there is somehing going on that can either be OK (I won't say good) or bad, then the bad option is always the one that occurs.
So, three more weeks of worrying and getting worked up about the surgery - certainly not looking forward to it.
Hi guys, am really sorry that you seem to be getting the run around. If there's anything I can do just shout - even if it's to meet up for coffee & a chat. Thinking of you all, love you loads, Lou xxx
ReplyDeleteA turn for the worse.
ReplyDeleteThe distress caused by the delay in the operation is now making a real impact on us both, and in particularly, Sian.
Events over the last couple of years or so, which I won’t go into now but will say have been pretty traumatic, have certainly caused plenty of stress for us both. Now, this coupled with the stresses of a delayed operation, future treatment plans and, of course, the very fact of contracting cancer itself has left Sian feeling so incredibly low that I am seriously concerned how she is going to get through this next three weeks leading up to the surgery.
Sian suffered a full-blown panic attack last Friday evening, something I really was not prepared for. Naturally, over the last few weeks there have been low moments for both of us and we have worked through these together but nothing compared to this. At least by the following morning, Sian was feeling better and we were able to have a normal weekend (whatever ‘normal’ now is). But over the last day, I have seen Sian start to drop rapidly again and, quite frankly, I am at a loss on what I can do to stop it. It is making me feel totally useless that I can do nothing to stop the woman I love plummet into the depths of despair. We spoke on the phone earlier today and it was plainly clear that Sian was struggling. In between huge silences all I could say was call a friend or get somebody to come over, all Sian could say was that she wanted to sleep. It is heartbreaking to see this unfolding before my eyes and be able to do nothing about it.
I’m finding myself blaming the cancer surgeon for causing this due to him speculating too much and about too many different things. From the outset, when Sian first saw him (and as Sian has already posted) he thought it was a cyst – but it wasn’t. Then, once it was known it was a tumour, he then said that it was unlikely that the cancer had spread to the lymph nodes due to it’s small size – but it did. Following that, he was confident that the administration team had been given some options to fit the operation in on the 14th March – but that didn’t happen either.
This whole episode has been one shock, disappointment or let-down after another. This is not giving me any optimism for the future and I am fearful that this constant barrage of bad news is now just standard procedure and will just now continue. For really the first time in all this, it has left me feeling genuinely worried about what the future is going to bring for us both. Perhaps this could be a touch irrational but I for one certainly have had nothing but upset as a reward for trying to remain positive and have now reached the stage where, as long as I fear the worst, I’m ready for it, and then if the worst doesn’t happen, is that a bonus or do I just wait for the next kick in the teeth from a different angle?