Hi grannyp- first of all a big hug coming your way. I totally understand where you are coming from and you have come to exactly the right place to get some support and offload.
Medical staff use medical language and I don’t think they realise how it can affect us. I remember one letter after a mammogram saying “no significant abnormality” - that set me off worrying that there must be some sort of abnormality, but when I grilled my poor consultant he told me that was just their way of saying everything was fine! I think sometimes consultants forget that we get to see copies of their letters.
My very best wishes to you as you go forward. The waiting is such a tough time, so please keep chatting to us all. Evie xx
Thanks for taking the time to reply. Yes, we are all different & all need to deal with this difficult time in the best way for ourselves. I think (for now!) I will want to ask questions and discuss what is happening but I do think that the suggestion of not reading the letters is a good one. Talking to someone and being able to have a hopefully rational discussion is totally different to seeing the cold facts in black and white. And they are purely cold facts. My husband was very disturbed when he was having some medical checks and received a copy of the letter to his gp. The thing that completely threw him was being described as ‘a 63 year old gentleman’. He knows just how old he is but this accurate description just made him sound like an ancient geriatric not a healthy and active guy running two businesses!! That upset him more than any possible medical issue.
Thanks for the good wishes and advice. Like everyone else in this situation I now just want to get on, get a proper diagnosis and get something done!
You’ll find you receive a copy of each letter sent to your GP and it will spell out the precise details of your diagnosis each time, followed by whatever new information there is (not always quite what you said, maybe, but generally a sound summary).
Personally, I chose not to read them. As you say, it doesn’t say anything you were not told at the time BUT the language they use is brutal and seeing all the codes (especially if you decode them) is downright scary. Some people need to know precise details to feel in control. Some people choose to blank it out - after all, there’s not a great deal you can do about it except deal with your personal levels of fear. I waited until I’d finished my treatment and then asked my breast care nurse to talk me through it all, which she did brilliantly.
One thing I have noticed at my hospital over the 2 years is the amount of copying and pasting so I’m not sure quite how accurate the information is anyway. According to the latest letter following a phone consultation, it STILL said ‘Bone scan recommended.’ Yes, I had that 20 months ago!!
You will soon get used to how the system operates. The trick is learning how to minimise its impact on you. I can strongly recommend the Ostrich Approach 😉
Wishing you all the best for what follows,
Yes you are right. We are all very fragile in this situation and I am certain I will be knocked back by many more things along the way.
You probably did the right thing by having a good cry - it is often a big release for the emotions. And we do have to get back up and get on with it - no other option!
I think I just didn’t ever expect to get a copy of this letter. I know patients - everyone, not just cancer patients - do get copies of letters to gps etc but just didn’t think about a copy of the referral letter setting everything out. Oh well, today hasn’t been a great day but tomorrow may be better and not long now until I have more idea which path this unwelcome journey will be taking.
I so understand this. I opened a letter I thought was full of leaflets my breast care nurse was going to send me only to find an appointment for a CT scan - which I knew I would get but not yet. It floored me completely and I sobbed in a corner trying to tell myself not to be so stupid about something I already knew. We walk a fine line of getting through this and it doesn't take much to push us off track. But we climb back and keep going. Hang in there.
Just in need of a little support. Was just beginning to cope with all this anxiety waiting for biopsy results and treatment plan and able to focus on other things more and more. Then yesterday- which started as my best day so far! - received a copy of letter from the radiologist to the breast surgeon, detailing all that had been done and found. Was not expecting this! Thought it was letter confirming my appointment. Although the letter didn’t tell me anything I hadn’t already discussed with the radiologist seeing it written down just floored me somewhat. Has anyone else had a similar experience?
Think I just needed to come on here to chat and get a bit of back up!!