Hi Laws
My treatment finished in June 2019. I now have a 6-monthly top up of biphosphonate which reduces the chance of recurrence in the bone marrow. Chemo but not quite...
Another thing that completely vanished with chemo was my IBS. Chemo was horrid and has had some long-lasting effects but I have to say there have been some gains, besides the obvious.
My diagnosis kept changing because I didn’t have a lump and people made assumptions. I just had 2 tiny blister-like freckles and, as my mum had had breast cancer twice (20 years apart), I knew not to ignore them, Plus I’d had a clear mammogram. So my GP wasn’t worried when she found a lump between my ribs (scar tissue from surgery in the ‘80s?), nor was my (private) consultant. Neither had seen anything like it and both said it was nothing to worry about (1). I even had an ultrasound that showed nothing. Then the biopsy showed the freckles were skin infiltrations of breast cancer so I’d need a lumpectomy (2) and another ultrasound by a much more thorough radiologist showed two tumours and infected lymph nodes so I’n need a mastectomy and axillary clearance and probably chemo (3). After surgery, it was found 19 of the 21 nodes were infected so I guess that’s 4 diagnoses - by that time I was sunk into a mire of anxious misery about how I would cope. I was described as “unusual.” So please don’t worry this will happen to you - you have had a thorough explorations already, from what you describe.
How did I cope? I switched off, handed myself over to my team, asked no questions, did as I was told and felt s*** for months. But no IBS, no panic attacks - just a load of loving friends and acquaintances who rallied round with lifts to appointments, moral support etc. Extra medication to make sure I wasn’t sick, that kind of thing. You'll be surprised (though I admit it will be harder given the constraints imposed by the pandemic) - even people I barely knew in my book group offered to take me to appointments! I saw a completely different world from my rather limited agoraphobic experience.
I’d strongly advise you to ring the nurses at the number above (they reopen after New Year) and ask how you get round your difficulties. It isn’t a simple trip for you. You may have to rely on taxis 😞 Alternatively, you could contact Macmillan. You really need some kind of advocate if your bc nurse was unsympathetic but it might be worth giving her a ring first and see if talking one to one about practical difficulties brings a different result. Sometimes their minds have moved onto the next thing when you’re with them and she may not have fully grasped how debilitating your MH is. My oncologist arranged for me to visit the chemo suite at a quiet time to help ease my fears and I knew I was in safe hands when the bc nurse said to her ‘shadow’ nurse that this (me) was an anxiety disorder, not simple fear about the treatment.
Imodium may be enough to reduce the fear of your IBS but you would have to check with the hospital that it’s ok to take it before a general anaesthetic. I certainly took diazepam the morning of my surgery (I couldn’t have got there otherwise) and the anaesthetist took it into account. I guess the trick (?) is to remove the emotion, stick to the facts so you can state your problems and expect them to find solutions.
I wish you all the best.
Jan x
