After feeling relatively at peace with my husband's cancer-ness, we arrive home after work yesterday to an envelope on our door mat. Now after all these years of cancer in our lives I can tell a scan letter a mile off...it's a talent, I'm sure!!!
Husband opens the letter and shock horror, it is a scan! Straight away I am thinking at million mph in my head, thinking of the date of the scan, then thinking of the date of the MDT and how that works with our work/life diary...already thinking of possible scenarios...if it's good news and we hear on such and such a date then that will be good to tell people on such and such of date. If it's bad news, it might be best to leave it until blah, blah date as don't want them to worry about it.
I'm already stressing that because my husband's had a few bouts of low bloods which delayed husband's chemo that I must mentally prepare that the scan might not look as good as last time (last time showed real improvements to the tumours) but then I'm worried the slight break in chemo might have made the cancer go crazy in husband's head and then we'll be back to square one with even less chemo options. Then I'm annoyed at myself for being stressed that the scan might not be as much improvement as last time and I should just be hopeful/thankful for no change...and of course I will be happy with no change...anything will be fantastic news compared to new growths or tumour increasing.
I'm a very logical person, I think things through and look at the facts, I like to take time to work things out in my head because otherwise I'd have a tendency to get angry or frustrated. I think of how the scan will appear logically at this stage in my husband's cancer treatment but then logic always goes out of the window as my husband has an incredibly rare brain tumour, with incredibly rare complications and anything that seems to happen to him Doctors are usually baffled with it...so what are the odds on that, logically my husband shouldn't be so rare (or unique as we've started to call it ha!) but he is! So even though logically the treatment should still be working...I know there's always a possible RARE curveball waiting!
So ALL these thoughts in a tiny space of time...exhausting!
I'm usually all stressed the second I know the scan date, then by the time the scan comes I have calmed down and logically worked out when we shall hear results and sorted out ALL possible scenarios etc but then when the scan has happened I get consumed knowing that someone within the hospital, knows our fate, before we do and I find that strange. My husband is just another scan to the radiologist, but to us that scan is major, every scan is just as important as the last. That scan could change everything! (Sounds overly dramatic, but it's true!)
My husband takes it all his in stride and just gets stressed on the day of results, but in the run up will get stressed about little silly things (which is obviously his way of coping with it) but I just seem to be up and down with thoughts, I worry more about how and when we are going to tell other people, rather than worry about how I'm going to cope with the results. I know this is the wrong way about it, I should be more focusing on processing it all.
We've now got into a scan routine, taken years to perfect but I think the balance is nearly there. We don't tell anyone outside of the hospital world the scan is happening, that way we don't put stress on others (and stress on ourselves, worrying about others!) We were finding because people knew about the scan/appointments, we felt the pressure to let others know the results immediately after the appointment which wasn't allowing us to think "Right, so what does this mean?!"
When we do get the results, we usually give ourselves a few hours to process and to chat things through as often with my husband, things aren't often straight forward...usually there's complication that only those within cancer can grasp, so trying to explain that in a nutshell to the non-medical world can sometimes be tricky!
THEN, once we are ready we will ring around nearest and dearest, then a few hours later a text/facebook to people, as we are conscious we have a lot of support (which of course we are thankful for) and they are as anxious as we are about my husband's health so we do feel it's important to tell news as soon as we feel we are ready.
Good news or bad news we always have some kind of fizz and naughty takeaway food...it's become a tradition! Usually it's because we get so knackered from processing the results, ringing folk and the lovely texts that we receive, we literally have just enough energy to open the door to the takeaway person, throw some money at them, stuff our faces and JUST have enough strength to pick up that champers glass ;)
I do feel we've got a little protective of scans in recent years and gone a bit control freak about it, my husband's family often want to share his news before my husband's ready (totally understand why they want to but in the same breath annoyed as it's his news, no-one else's!). We often have to get a bit forceful with news as we were finding news was getting passed down but each time, tiny bit of information was incorrect and so on, so people were taking the news in ways that weren't exactly true.
We try and be very honest about my husband's prognosis, he won't be around forever, the cancer will more than likely eventually take over but people will always take us being honest as being negative, which we aren't, we are being honest as that's our best way of dealing with it! When there is good news, it's amazing, no better feeling, but we have to be honest and say how it's early days or how things might change at any time and how my husband's life is basically a scan by scan decision by his amazing medical team.
People always want to know, "So when will you be better?" "When will you finish treatment" and we haven't got an answer for that, we don't know, the medical team don't really know. We've found our friends and family have found that bit difficult to deal with as my husband has been cancer free at different stages so they automatically assume that will happen again but nothing is certain, especially with cancer!
So after all this rambling on, I don't know how to deal with the whole scanxiety issue, I know my way of dealing with it would annoy some people but with others it might help...there's no one size fits all, it's a case of working out what suits you and running with it!
So to anyone who's suffering with scanxiety right now, good luck :)
