Mum has gone home this morning… We got so much done whilst she was here; sewing curtains and knitting blankets and gardening and more. Poor mum doesn’t get any rest whilst she is here! I hope she didn’t want one! It’s nice for her to be home I am sure but I always feel sad when she goes. We wish we lived closer to each other so we could see each other more.
So the all anticipated CT scan results finally came through yesterday by email. As predicted they were not ready on Tuesday at my clinic appointment with the Prof. That was disappointing as I sat there for over two hours. So I pursued my results by email and the Prof‘s secretary was hugely disappointed as she had asked the radiology department to have them ready for me. I am not surprised.
I got them yesterday and wanted Pete to read them first and decipher them in his way but the attachment on the email bore a hole in my head. I couldn’t wait nor help myself. I have to say I was disappointed with what I read.
I expected more reductions and even less tumours. And essentially the scan results are good but in my usual way I see the negative as a big setback.
Basically the positives are;
None of the tumours that were present in February have grown nor have they reduced. They are stable. This is great, essentially. The mediastinal lymph nodes are still subcentimetre. There is no mention of the hilar node- so maybe that isn’t there? Great!
There are no new ones in my abdomen or liver and no mention of that one that was there in my ovaries. So that has gone too and stayed gone since February.
The spine still has the stable predominantly sclerotic vertebral lesions. No change there then.
There is a cluster if several new progressive right upper lobe coalescent peribronchialor nodules that lie inferior to the largest tumour in my right lung. I am not sure how many several are and if that means cancerous but I am guessing it is.
This really got me peeved. I was so happy with my brain being so successful and really hoped my body would emulate it. I can’t help but feel disappointed. It’s like whatever I am doing is never quite enough. I am never doing more than enough; I am only doing just enough to get by.
I have sent the results to Dr Nesselhut so he can plan my next treatment whether it is still continuing with nivolumab or not. He is away until Monday so I have to wait until then.
In the meantime I have been messaging the Prof and asking some questions but his secretary is off until Monday also. I have running through my mind how I feel and as time passes and I settle I become more rational but I felt grumpy and upset initially. Enough isn’t enough for me. I want more. I guess that good as it keeps me fighting but it also messes with my head. I sit thinking what have I done differently? What could I do differently?
Pete thought the results were great and said I have focussed so much on fixing the brain that now it’s time to focus on the body. Maybe I have but I really believed I had nailed it especially as I feel so good lately, (although ever since gamma knife I am feeling a little more tired than normal.)
If I look at my previous scans from last October onwards, I have done so well. I have reduced and resolved tumours. I mean come on…. but I need it to continue in the right direction. I guess I just want some leeway, some respite from having to be so intense and I so wanted to be able to have treatment less and less. This was assuming that nivolumab was the answer. I now feel that I may need to go and have TACE again. I will discuss it once I have spoken to Nesselhut.
My bloods are also low again; haemoglobin, blood count and red blood cells etc. I don’t know why and I certainly don’t feel light headed. Maybe it’s because of the gamma knife. I will increase my iron intake with foods like beans, pulses, spinach etc, but Prof has told me in the past its nothing that diet can change. No harm in trying.
My head has been changing daily since the gamma knife procedure. I have had tingling and numbness and now my temple is very tender on the right. The entry wounds are healing brilliantly but I do feel ultra sensitive when I lay down. It doesn’t help that I keep banging my head. I always was a clumsy person! I have felt nauseas and been sick a few times but I think that could be anxiety at times.
The C Word:
I watched the programme Monday night with my mum and Pete. I wasn’t looking forward to it but know that Sheridan Smith is an amazing actress and would do a great job of it. I have the book already but have never read it. I have to say it was very powerful but I felt quite angry throughout it. I felt they focussed so much on hair loss and looks. I know this is so important for many women but they didn’t really go down the secondary cancer route. I felt frustrated that many people will still believe it’s all over once it spreads but I hope to show everyone that I can beat it or at least stay alive until they find that treatment that will keep it stable for many years. I haven’t done too badly so far as its now approaching three years of having secondary triple negative breast cancer. It was hugely emotional and I felt unsettled after as I so don’t want to be a statistic and be another young woman dying of breast cancer.
News of Rio Ferdinand’s wife dying has also been hard to stomach this week and all it does is make me worry, I think. I know how fragile life is anyway but I hope things don’t turn for the worse. I feel so sad for Rio and his family and it feels like every where I look some young amazing woman is being taken from her family. (Watching the Restoration Man last night also had another young mum die of cancer) I can’t be ignorant and pretend it doesn’t happen but it makes it so hard to think am I going to be next? Or how long do I have?
I don’t think any of that has been helped when I went for a smear test yesterday (close your eyes boys, you might not like reading these intimate details!) Ouch, ouch, ouch!!!!! That’s exactly what I said to the nurse. It bloody hurt like hell this time round. I’m being a pansy after last week’s procedure but OUCH!
I spoke to a doctor at the Care Oncology Clinic earlier today and told him my results. He said that I should feel really positive and sometimes things like the new nodules could just be inflammation and not to read too much into them. He has re ordered Mebendazole for me and I will see them soon to discuss the drugs they put me on back on October; Metformin, Mebendazole and Atorvastatin.
Now I have put all this down on ‘paper’ I feel better. I feel a bit silly that I am moaning when I have got it so good and actually things are great for me. I just want them to BETTER! I want Pete to have some respite too. This is so hard on him every month. The cost, the upheaval, the decision making on what we should do next. I wish the bloody NHS would make nivolumab and ipilimumab accessible to the masses. Hurry up research! I ‘m being a spoilt brat now, but I want to think about something else.
It doesn’t stop Pete and me from having fun and loving each other though and that’s what we have to do. All there is… is LOVE.
I’m off for some iron rich food and to try and dodge the rain whilst hanging out washing. It’s the simple things that keep me going.
Light and Love.