I better continue making more memories. We are starting off with a camping weekend, tomorrow.
The oncologist I have is wonderful, he listens and answers all my questions and I want to know everything, all the statistics. I did ask him about my life expectation, he was not very keen and of course he doesn’t know exactly. When I asked him if it would be realistic to say that I would have one to two years, he agreed. Waking up this morning and going over everything in my head, I think it will probably be closer to one year.
“Sometimes I feel OK, but I also have many times where I well up and feel sad”
The camping was a good distraction, we walked lots, which helps me. Every morning I wake up, I think, “Ingrid you are going to die”, it’s going through my head many, many times a day.
Sometimes I feel OK, but I also have many times where I well up and feel sad. I don’t want to leave Jean, my husband, and the kids, that is probably going to be the hardest bit.
Even writing this down now, makes the tears come. It’s very important that I don’t think about all the things I am going to lose, but instead about all the memories I had and still have. It was good that Jean and I had a lot of quality time together when we went camping, just talking everything through.
Perhaps we don’t do that enough, I have the tendency to arrange lots of activities with Jean and friends together. Jean doesn’t get all the support I get, perhaps partly because he is not the patient, but also because many men find it hard to approach the subject and avoid talking about it. Jean finds it hard to bring it up himself, especially if nobody asks.
It has been exactly two weeks since I had my surgery but except for the fact that my axilla area is still a bit swollen and sensitive, it feels like it happened a long time ago. I’m trying to move on and thinking a lot about the stage 4 breast cancer I have got, knowing that I will never be treatment-free anymore.
I’m worried about the outcome of the CT scan and whether I have the marker or not. If the cancer has spread and I do not have the protein marker, I’m really afraid that my disease will progress very quickly.
So far I can still do a lot of walking and running (after a few more weeks of healing for my wounds), but what will I do if I can’t do that anymore? I bought some new running shoes today and wonder if they will be my last pair. I have started to read about symptoms of bone, lung, brain, and liver metastasis. I’m definitely not looking forward to it all, especially the pain. Again I should try to just live in the present, but it is hard and I cannot always do it.
I have tried to find articles about progressive disease during neoadjuvant chemotherapy but there are only a few articles about it. According to the papers, there are only 3 to 5 % of the women with TNBC that develop further disease during chemotherapy before surgery, so that is definitely very rare.
I will get the outcome of the CT on Thursday but I’m worried, perhaps it has spread to the bones because sometimes my ribs ache, but maybe that’s psychological? Every day I get slightly more anxious but I keep myself distracted. I’m walking with a friend today and working tomorrow. Let’s just hope that not both the marker for immunotherapy is negative and the cancer has spread to other parts of the body, that would again be the worst possible outcome.
Ingrid Fuchs is lead clinical nurse specialist, Avon Breast Screening, Southmead Hospital, North Bristol NHS Trust