I've been waiting for the dreaded call this afternoon inviting me to see my consultant in the morning. The call never came. Read into this what you will because I have. Today has been one of the hardest days for me. I was told last week that my case would be discussed today (the usual thing - it's always Wednesday morning) and that I would get a call later on in the day to make an appointment to see the oncologist. What am I to make of this? Has the call not come because the meeting was cancelled? Maybe I didn't get a call because the MRI has thrown up a worse situation and they need to speak to other consultants before seeing me? Are they trying to find me an urgent bed? Has nothing further been found and there is no immediate urgency to see me? Did the MRI not work properly as I went in on my tummy? As usual I prefer to think that something major has occurred and so I expect the worst. I cried today. I am a cryer by nature. I can cry for anyone's child in a nativity play. I'm embarrassed by my ability to cry at the most menial of things. I always feel I need to man up. Anyway I don't want to cry about cancer. I really don't. I don't feel sorry for myself and I don't think 'why me" I think 'why not me" - it happens to babies and teenagers, why should I be exempt? So crying today annoyed me and I soon told myself off and stopped fairly sharpish.
I AM annoyed though. I'm angry. I shouldn't be because obviously several people have had similar phone calls today and they may well be in a worse situation that me and they deserve those phone calls. Everyone tells you that the waiting is the worst and it really is. It is difficult to even understand what that might be like until you find yourself in a situation where you are waiting. I didn't sleep well and I have been expecting the worst but not getting the phone call has exceeded all my usual feelings of anxiety.. I thought that by tomorrow morning I would know my fate. Part of me doesn't want to know but the sensible part tells me that once I know what's got to be done I can knuckle down and get on with it.
Now I am left in limbo not knowing what on earth has gone on and I certainly won't be seeing my oncologist tomorrow. I have phoned the cancer nurses. They always ring to make the appointment anyway. I wasn't going to call but I just couldn't help myself, I didn't want another restless night. But there was no reply, the call just went to answerphone. So here I am, waiting again. It's been over a month since they found cancer in my colon and I am still waiting to find out exactly what's going on. It's complete and utter torture.
2 comments:
Sorry you are still in limbo - it may be that the MDT didn't have your results to discuss yet as my oncologist reg told me to make sure there was a good ten days between my next ct scan and a follow up appointmenf as radiology can be slow at getting things checked and reports written. Even when the MDT discussed my case initially, it was a week before I got a letter ( had already had call from radiology for scan appointment before my consultant even wrote) and another week before specialist nurse rang to say why I was having a scan. It's not always very joined up thinking until you get into the chemo stream and see your oncologist regularly.
I a a great believer in having a good cry and letting it all out then pulling big girl pants up and focussing on what I can change. All of us whether we have cancer or not , on,y truly have this moment and we can waste so much of our lives worrying so I try and practice a bit of mindfulness and accept that whatever happens I am alive now and need to live fully in it. On our way home on Saturday our type blew out , luckily not on motorway , and that could have been the end of me and yet I don't worry about getting into a car as much as I worry about my health.
I'm sure they will contact you as soon as they have any news to report -the waiting is one of the hardest parts of this situation but I've found if you just get on doing the same old usual things that you enjoyed before, you do have moments when it is all forgotten or at least not at forefront of your mind all the time.
How is your daughter btw? Any news on her lump?
All the best Debs x
One of the nurses told me last week she would make sure that she would have the scans on Monday or Tuesday ready for today - thats why I'm disappointed. I think it works a bit differently here. I always get a call the day the MDT have met and get an appointment for the following morning. I completely agree regarding living your life to the full! Once I have a full diagnosis I can move on with things I just don't like this in limbo stuff at all and I find it difficult to make any plans for anything without knowing what's likely to happen regarding treatment if needed in the immediate future.
I have had a phone all back from one of the nurses now. My case wasn't discussed this morning so I can only assume the scans were not available. I have to ring in the morning to chase it up.
No news on daughter. Appointment is weeks away :(
Thanks so much for your support! xxx
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