It has been some time since I left you knowing I was about to receive the scan results, and the truth is , that the words would just not flow freely when I set to update my blog. With plenty of time to process all the information and it’s implications, it’s time now , in true Suzanne fashion to deliver a pragmatic account of my news.
So, the CT scan results were not that great, and with the benefit of time and a mindset adjustment, I have decided that they are certainly not the worst.
As I suspected, the CT scans showed an increase in the size of the lumps under my arm and neck and this in itself ‘did not worry’ the oncologist…though funnily enough it did perturb me!
It also seems that a lymph node in my chest is having a cancer party, and one which was not there at the last scan. My lymph node has valiantly tried to do it’s job and filter out those pesky cancer cells , but alas the cancer has overtaken and is growing around an artery.
In addition, the CT scan results shows ’ Irregular sclerosis of the clivus’ which is a portion of bone at the base of my skull. It’s unclear how long this has been there, as it was the first time they had scanned that far up since being diagnosed with secondary breast cancer. I certainly haven’t had any significant symptoms associated with this area. I haven’t been given an assertive ‘this is metastatic breast cancer’, and the standard medical line is that ’they are not sure what it is and will monitor it going forward’.
I appreciated Dr Knighton’s balanced approach, after all you can’t have doctors freaking out all over the place, however you don’t need to be a rocket scientist or a ‘google extraordinaire’ to know this is scary cancer stuff….. eeek….!
The appointment on the 22nd June 2018, had been a difficult one ….but not because of the results. I had initially been seen by Dr ‘Numpty’, (not his real name) a locum Dr, and he just would not answer any of my specific questions about the CT report, ie what is the ‘clivus’. Instead of answering the questions I was asking , Dr ‘numpty’ told me to remain positive, assuring me it was minimal progression and he signed me off for my next treatment of Herceptin and Pertuzumab.
Ruth, my breast care nurse was with me and even when she clarified that ‘I am a very positive person ’ and just needed my questions answered , it was like pulling teeth and we were going around in circles. At one point I asked whether my clivus was in my chest and he said YES!… well of course it isn’t and so this reflects my general experience with Dr Numpty, where language proved to be a barrier.
I was desperate to understand what was going on in my body, but was keen for the appointment to end because I was feeling quite vulnerable and disempowered. Fortunately, Ruth found the very busy Dr Knighton and she arranged for me to meet with him straight after.
This is where I found out that my clivus isn’t actually in my chest!!!! I felt quite ‘nauseous’ when I learnt that this was part of my skull….. I thought ‘ok I was gonner’, though Dr Knighton still referred to CT findings as ‘minimal progression’. The medical definition clearly isn’t in sync with my own definition of minimal, the cancer seems to popping up like pop corn in random places….. but it’s kind of reassuring… isn’t it ?
Whilst Dr Knighton explained that the progression was minimal, the fact the new lymph node in my chest was growing around an artery, and because of the area showing in my clivus, this was indication enough that the treatment regime wasn’t working. I loved that he deliberated out loud, his concern was if he didn’t change approach ,that the one in my chest could make me too unwell for the next treatment option.
So my treatment plan was changed and I started my first infusion of Kadzyla on 27th June 2018. Kadzyla is a ‘target’ treatment. It’s a combination of Herceptin and a chemotherapy medicine called emtansine. Thankfully the chemotherapy component is delivered through the Herceptin so the side effects are more manageable than when I had Docetaxol as a systemic treatment.
Kadycla is administered at the hospital through my port and in theory takes half an hour, so this cuts down my time at hospital . This is certainly the ’silver lining’ that I can pull out when conversations get awkward with people that enquire into my health news.
I must admit, ‘at the moment’ I struggle when I am offered ‘silver linings’ by others or well meaning encouragements when I have ‘ shared my difficult news. I’m pretty good at recognising my own silver linings, and I find when they are offered ‘without’ a flicker of acknowledgement or an attempt to understand the substance of what I have shared, I feel an overwhelming sense of loneliness and I sense my self shutting down these conversations.
I’m sure this is about my mind set catching up with the ongoing and ever changing direction that my cancer is taking me. The recent news for sure has whipped me up in a bit of a panic and doubt.
I am beyond desperate to be well enough, for long enough to ensure that my grandson Jonah has established memories of fun times spent with his ‘Nanny Dory’ and feel the love I have for him first hand, instead of knowing this from photos. My great nieces and nephews are so young and so so important to me and I want to be around long enough for them to know their crazy aunty too. In vulnerable moments I feel that all of these things are slipping away from my grasp, so I have not cared much for the silver linings anyway.
Please know, you can feel like this and be ‘positive’… I am living testimony to this, I am in essence ok 'AND' not ok all at the same time , being positive has it’s complications when it comes to cancer and life so bear with me.
I had my second Kadzyla cycle on the 17th July and ‘I think’ I have just got a handle on the symptoms. I’m quite tired and fatigued and I initially experience some mild nausea and headaches. On a day to day basis, there is always some level of ‘ickiness’ and forgetfulness, however I have no time for this to interrupt my ‘life’ plans. I continue to work, while I can, doing a job that I love, to fund the life that I want and I am also busying my self with as many Nanny moments I am allowed and getting the Living with living well project off the ground.
Leading up to my second cycle, I was noticing that the lump on my neck was going down and I was sure that the one under my arm was too… I was quite cautious about getting too excited about this, I wasn’t expecting such a tangible response to the treatment. It wasn’t until I went to the oncology review on 13th July that the Dr ( I forgot her name … too many oncologists to remember- not happy with lack of continuity and numpty Dr’s- rant over), said that it was wholly possible for the treatment to respond in this way, and so I have quite confidently been telling people that the treatment seems to be working.
To have such visual response is comforting , I really can’t feel the one behind my collarbone at all now, and I’m hoping that the treatment is sorting out the unsolicited cancer pop corn parties that I can’t see in my body.
So I shall continue with the treatments on a 3 weekly cycle and await further scanning in September to see what cancer has in store for me next!
In the mean time I will be requiring some patience from friends and loved ones whilst I finalise the transition to my for ever home on 10th August, set up the Living with living well (LWLW) project and prepare to trek up Snowdon on 18th August 2018.
I am more determined than ever to get up that mountain to achieve the goal I set myself back in January and raise funds for LWLW. I have many cheerleaders coming along to make sure I make it. You are all welcome to come along too - check out the LWLW facebook page for information about this… I have set up a Total giving page for the event and if you want to and are able to, feel free to make a donation using this Total Giving Link
No comments:
Post a Comment