Newly Diagnosed

Hi Marg Sending you lots of love and sorry to hear about your most recent diagnosis . It’s really tough isnt it ? I was diagnosed about a month ago and it has been an absolute rollercoaster . I too feel apprehensive about treatment now .. initially you are just so overwhelmed by the diagnosis then you start to come to terms with it and move in to the fear of the surgery :) . I manage fear of the treatment by reconciling that I HAVE to go through the gruelling process sadly .. I don’t mean that to sound blasé but otherwise I’d be so fearful . My doctors assure me that it’s ok to feel scared , anxious and not always “positive “ . If I had a pound for every time a friend talks about positivity and outcomes i’d be a rich woman ! Sick but rich ! . These words have given me such comfort , allowing myself to feel how I feel whether positive or negative in that given moment or day is ok . Big hug x

It' is definitely ok to feel scared. It's a massive rollercoaster. My other half was more scared of my surgery than my chemo. Even nurse commented he looked terrified when she escorted me to theatre. And when I started chemo first thing I did on arrival at first cycle was burst into tears. However it got easier with each cycle as I knew what to expect. 

Husband and I found it better to be negative - reverse psychology. At the start we tried to stay positive but got knocked back at every stage - we hoped not cancer it was we hoped chemo wouldn't be needed it was. So when it came to chemo we decided I was going to get every side effect going and it was going to be awful. And it wasn't as bad as we feared. Yes I had setbacks - an abcess in my surgery scar and a round of sepsis but other than that I wasn't as ill as expected .

So glad I joined this forum as it has been a wonderful source of advice and support. And has given me the opportunity to give support to others too.

Big hugs xxxx

Hi Cloudier

It’s great to hear from people that have been through it and have been ok. How does chemo happen? Am I in a room on my own? Can my husband be with me? I know I have one drug, then the other and they take an hour each and I think it’s an injection for the last 2 so I take it I’m there for a few hours. Audiobooks are a great idea - thanks for that. I don’t think I’m having EC as a first option but everything is dependent on how the next lot of tests go. 
Thanks for your reply and I hope all is good with you 

It will depend on your chemo unit as to whether someone can come with you. Mine I couldn't. And again in terms of where you have treatment depends on unit. Mine was a couple of rooms with individual reclining treatment chairs. Large TVs to distract you as well. I had ec and with cold cap I was there about 5 hours then three without cold cap. Docetaxel was quicker as less infusions so was only there couple hours. 

Yes I’m certainly feeling overwhelmed. My first reaction was can I really go through this again but actually this treatment will be far worse than the thyroid cancer treatment. Also having cancer I found emotionally destabilising and now I have two, I’m not sure how to feel about the future and the plans I had. No one has spoken to me about positivity, I’m finding myself comforting family and friends as they cry and reassuring them that everything will be ok, but not very convincingly. Big hugs back at you. Are you having surgery first? Do you have a date?

Hi Marg06, thanks for your reply. I had chemo during the Covid period, so no one else was allowed on the chemo ward. The first one was at the hospital (so they can see if you are ok), and then after that, I had them on a mobile cancer unit (I live in a rural area). There are four recliners on that. It comes to different market towns on each day of the week, and my local town was Thursday. A really nice experience as local, no travelling, and you have the same chemo nurses. They check you over each time and dispense your medicines and anything you need. You mentioned carboplatin, which I think is given for IBC. Like you, I had chemo, then surgery, then radiotherapy. I’m now on Anastrazole for 10 years and bisphosphonates. Last week was my two year surgery anniversary, I almost forgot. The positives? Well personally I practice gratefulness, for the smallest of things. I used to be a next week, next month, next year kind of girl … now I’m a ‘let’s do it today, tomorrow’ person. I took semi retirement (again that used to be a ‘next year’ plan) and now spend more time drinking cups of teas with friends, with the birds at the allotment, browsing books at my library, listening to the radio, and supporting my adult son in his very busy and tiring (but hugely rewarding) community focused job. I would rather not have had cancer, but I did, and in some ways it has made me a better person than I was before, as I took so much for granted. But that’s just me, and we are all different. Take each phase as it comes … xx

That’s lovely - a very positive outlook. I took early retirement in January because all priorities shifted when I had thyroid cancer and I knew I couldn’t give my all to work, that’s turned out to be a very wise decision! And yes I have a lot to be grateful for and although things are bad they could be much worse. I know I’ll be having treatment at the specialist cancer hospital but we live very close to it

Thanks for that - I’m just trying to prepare myself for it. I hadn’t realised there were mobile units and different protocols depending on the hospital. I’ve had lots of new experiences over the last week, the MRI breast scan was almost funny - upside down with my boobs in giant cup holders - I thought they were joking at first, unfortunately not! 

It does become easier once you start treatment. I am on my second whirl through this - adjuvant chemo last year for what was assumed to be early stage TNBC; immunotherapy and chemo now for metastatic TNBC. My own experience is that you can’t take someone with you into the day unit. There isn’t space, they still operate Covid measures (masks and a negative LFT) required for entry. You are also there so long it wouldn’t make sense. Most people read or listen to music, or sleep. On the nail issue, I would recommend Polybalm rubbed into the nail bed a couple of times a day. I had no issues with my fingernails at all, just some discolouration on each of the big toe nails. 

Hi Coddfish

Thanks for that - I’ve never heard of polybalm. Yes it makes sense from an infection perspective that relatives are excluded. Sorry I’m new to all this what is TNBC?