Hi Folks, Well I've just had my six month checkup at oncology and my oncologist was very pleased but also very apologetic! She was apologising for all the side effects I am living with even although the cancer seems to be under control! I told her the main word there was "living" and without the drug, I wouldn't be!
It is three years now since I stopped the Target Therapy and because of the severe side effects, my oncologist, my husband and I discussed not going straight onto Immunotherapy but waiting until things settled a bit. No one realised I could be off treatment this long without the Malignant Melanoma (stage4) raising its ugly head again but that's exactly what has happened! It's not been plain sailing what with the drug accelerating my osteoarthritis so much, I needed spinal surgery in March. I have an appointment with the Spinal Surgeon next Wednesday. I still have pain issues, especially when trying to sleep. Although I visit oncology every 6 months, I now also visit Opthalmology, Dermatology and the Liver Clinic every 6 months also. Up until now, I've had six monthly scans since I stopped the drug in Sept 16. Before that Everything was 3 monthly, except oncology which was monthly, so as you can imagine the number of appointments have decreased which is wonderful! I didn't get scans this time because the blood results for kidney function weren't very good, so she doesn't want to use the contrast fluid. They will be done in Mar 20!
In a way, it's a weird position to be in "living with incurable cancer" because this is not the life I was expecting to live. I'm not very mobile, which is the worst thing (apart from the pain) and still get tired easily BUT I've just seen our second grandchild start school and our youngest starts next year, so that will be all three at school! When I was diagnosed in May13 and given 5-7 months to live, we had 1 granddaughter and never in my wildest dreams, did I expect to see her with a school uniform on, let alone see another 2 grandchildren come into the world. Yes, I still have some very bad days and but as soon as one of the children say "Hi Gran" with a lovely smile, all the bad days are forgotten!
For those who have just been diagnosed, remember no one knows what the future holds. Miracles do happen. New drugs are being developed all the time. Terminal is now an old fashioned word. Instead think of incurable which can be treatable and there are lots of others here passed their "sell by date" so never give up hope!
My husband and I are off to Salou in Spain next Fri (27th) for two weeks to celebrate our 48th Wedding Anniversary, then in December we go to the Christmas Markets in Manchester and in February we go to Benidorm for Three weeks to get away from the bad weather. So life goes on!! Good luck to everyone having treatment, hang on in there!
