Rollercoaster

[jenny8c]

Grrrr. Just seen my oncologist today, and having been told 4 weeks ago that I could not have the operation I was ready to go to theatre for as there was no ICU bed, I am now told that I might not have the operation at all if my OC is aggressive and if the last two chemos have not been effective. This after they performed a painfully to get over laparoscopy to say yes they could operate and 4 chemos which worked. Sorry - just needed to let off steam as it was not what I wanted to hear today - I just wanted a new date.

[Kryssy]

Hi Jenny,

It must be very frustrating for you to be messed about like this. It's an anxious time for us all as it is and you must be feeling angry about the delays and changes of minds. I, like a lot of us, can't have surgery at all and I've resigned myself to that some time ago. Sometimes it isn't the be all and end all but if you are waiting for it then those in control should get their fingers out and get it done for you. I hope it won't be long and that when it's all over you have a good recovery. xxx

[jenny8c in reply to Kryssy]

Many thanks for your kind words. I expect I will accept the fact I can't have surgery if that is the case as there will be no choice. I just wish my consultant could have said there is a 5 or 10 or 50% chance you might not be able to have surgery rather than to leave it up in the air. It was just the opposite of what I was expecting to hear and it hit hard. Oh well I did have my 6th chemo yesterday so that was something. I hope things go well for you too. xxx

[Hyacinth1]

Hi Jenny,

I'm like Kryssy in that I can't have surgery either, they told me I was having it and then a few weeks later changed their minds so I know how you feel but they haven't said a definite no to you yet. I take heart from other ladies who can't have surgery on here like irishmolly and others who have a lot of years under their belt and I hope I can be one of them. Good luck if you do have your surgery.

[jenny8c in reply to Hyacinth1]

Many thanks for your reply - it is good to hear that other ladies have many years under their belts without surgery and I really hope you will be one of them.

[Nancy222]

It'd be so much easier on us if these rollercoaster rides didn't happen. Hugs on the frustration.

[jenny8c]

It certainly would but I doubt it will stop with the NHS being what it is. The staff are, in the main, lovely but the systems leave a lot to be desired.

[Kryssy]

Hi again Jenny. If, like Hyacinth and me, you are not suitable for surgery then please don't think that you are missing out. Sometimes it's best not to have surgery, especially if the cancer is in the lymph system. It was explained to me clearly that the doctor could open me up from chin to vagina and take out what he saw but he cannot take out every single cell which isn't visible to the naked eye - or a magnifier - nor in my lymph system, nor take out too many lymph nodes. Besides, by taking lymph nodes does not take it out from the lymph vessels running throughout the body. I think we have between 600 and 700 lymph glands in our system which are connected by tubes. Don't ask me the right names as I've not a clue. Once it was explained to me clearly then there was no way I wanted someone opening me up and messing about. Those cancer cells in my lymph system will find somewhere else to go and I have enough for now thanks. I look on it like the circle line on the London underground. Just going around and around and hopefully being attacked with the chemo etc. and I don't want to end up like the district line.

So, please try to think more positively and that for now - and hopefully for many years to come - your cancer is contained where it is and can be controlled and maybe even eradicated. A lot of girls do have a recurrence even though they've had surgery. Who'd have thought that all my tumours would have shrunk as much as they have and that some have disappeared completely. It may not last but who knows. I don't and for the moment I don't even care. I'm enjoying the feeling of being stable as it's about as good as it's going to get for me and I can deal with that. I've been to a reunion this afternoon, having not seen those there for several months and everyone was astonished at how well I look. I was lapping up compliments all afternoon (thanks to my friend Max Factor and a very short growth of hair). The last time they saw me I looked like something from a concentration camp, couldn't even hold a cup properly or walk without holding onto people or furniture. None of us know what's around the corner. I hope your corner is a good one. xxxx