Update 4: 27th June 2018
The day when the most unexpected happened and lessons for us all.
Yesterday was supposed to be THE day – and what day it has turned out to be.
I had arrived the night before and booked myself into Dame Unity House, and accommodation next door to The Royal Marsden for patients and relatives.
At 0730 on 26th June I was one of many climbing up the stairs to the Day Surgery Unit. The last time for me had been on 3rd July 2012. You never forget such dates.
And I was probably the only one to walk back down those stairs – without surgery.
It had all started so well:
- First one on the list.
- Great rapport with surgical, nursing team and anaesthetist.
- I was focused, composed and ready to go.
- I got marked up on my chest, showing where and how my breast was to be removed.
Speaking with the anaesthetist, I went through the same questions, I had been asked so many times before: including what am I allergic to? So I rattled it down again.
I will never ever grumble again about being asked the same questions by more than one person.
Because some answers mean different things to different people. Perhaps they should not, but there we are.
In my case, the mention of chronic urticaria (a skin allergy) set off alarm bells and I was asked for more information about how / when I developed it. It had all started after my treatment for chicken pox last December.
Cut a long story short, after further discussion with the surgical team, it was put to me that in the absence of diagnostic tests to identify the underlying triggers for this condition, going ahead with the anaesthetics may be risky (or not – we don’t know for sure). What if I was to develop an allergic response to the anaesthetics? One of the possible triggers for urticaria can be medication that cause a histamine release.
We decided to err on the side of caution – and most importantly, to follow the guidelines of the Royal College of Anaesthetists. Now I have to get the relevant allergy tests done, first, and see what they come up with.
Now you may ask: Why now, how did it come to this, who is to blame … Yes, I know. Perhaps more tests should have been done when this was first diagnosed (not by The Marsden). I did not realise it. But then again, the urticaria had settled down. I had been pushing for allergy tests, because I was concerned about any underlying immune system issues. Lateron I also needed to prioritise the cancer treatment. Perhaps there is a lack of linked up thinking. Perhaps someone dropped the ball somewhere. Everyone is under immense pressure. Perhaps that’s not an excuse, but that’s the reality. We all are trying our best.
I guess there is something of everything in it. And this time it is my turn to get caught up in it all.
I am glad it was picked up at all. And I am glad I had mentioned (again). The medical staff at The Royal Marsden NHS Foundation Trust had been most sensitive, caring and supportive. It was not an easy decision, for any of us. But I am thankful we discussed it and it was all well explained.
Of course I am frustrated and angry and tired. All the emotional strain on myself and those around me. All the decisions I had taken.
Things were meant to get easier and not more complex and complicated and drawn out.
And the moral of the tale? Several!
Here is what I have learnt and been reminded of. You need to draw your own conclusions:
- I must never assume others know everything they need to, just because I have said it before, or written it down. That does not just apply to medical issues.
- Even with cancer (or any other major illness), I must not take my eyes off the rest of my body and ‘health’. A lot more may need my attention and can go wrong.
- I must never make assumptions about what others should know or do on my behalf. I need to research, ask, check and double check.
- I must never get tired, when several people ask me the same questions. Often it is a back up and safety approach to catch mistakes and oversights.
On the day of my unilateral mastectomy, I have come home with both breasts in tact. And one of them continues to have a local cancer recurrence, a grade 2 tumour.
- I am not freaking out about it – I could.
- I am not denying the severity of the situation – I am not good at denying the tough stuff.
- Clearly, this needs to be sorted out. Quickly. And I need to make it happen.
- Thankfully, because of the nature of the tumour, my surgery is (currently) not life-saving. But this could change – who knows.
For the time being, I have decided to focus on re-establishing some kind of “normality”. For the sake of my wellbeing I need to stay calm and preserve my energies until the operation can go ahead safely.
And in the meantime, all things being equal, you may find a few more new posts coming up.
For now, warm wishes for you all.
(27th June 2018)
Update 3: 24th June 2018
Thanks so much for you continuing best wishes. The positive energy many of you are sending has certainly made itself felt.
It has been a busy week, full of practical, physical and emotional preparations.
Yesterday, Lilly had her last stitches removed. The results confirmed that a Grade 2 skin cancer had been removed, with a 19 mm clear margin in the tissue sample. She is full of beans. Clearly, I need to keep an eye on her and any red flag signs of secondary malignant growths.
I am busy putting my house literally and metaphorically in order for my mastectomy in a few days time.
I have just published a new article which I started mid May, shortly before my re-diagnosis.
“That’s the last thing I want to read about” I hear you think!
If you have a few minutes, give it a go. It is something we all should have on our radar. The article talks about the emotional hurdles involved for those donating, their family and friends as well as medical staff. It is based on a recent experience of mine. Going under the knife in a few days time, I am glad that those doing the surgery have had a chance to be trained on real bodies. I know, it all sounds a bit macabre.
For now, today’s picture (above) reflects the mood at this end – gratitude, peace, nature and growth. I treated myself to the little heart-shaped cutting and fern pot.
I will be back here as soon as my post-op recovery allows.
For now, with warm wishes for you all.
(24th June 2018)
Update 2: 17th June 2018
Some good news.
I have been quite overwhelmed by it all. It’s the kind of gestures we can give to each other, which provide warmth, comfort and strength. I am grateful for it all.
I am happy to share some good news.
After a local infection, Lilly is recovering well and frustrated about not yet being allowed to play ball. All things being equal her drain will be removed in a few days, followed by the stitches. We are still waiting for the full results of her biopsy and what, if any, further treatment she may need.
Following the local recurrence of my breast cancer in the same breast, further scans and tests have not shown evidence of cancer anywhere else in my body. As things stand, there is no indication it has metastasised. I will have a unilateral mastectomy by the end of the month, with no chemo. I am planning to write a piece about mastectomy (what to consider, how to prepare practically and emotionally). But at the moment, I am busy doing the same for myself.
Looking back, I am glad I never ignored the possibility of the cancer returning. I believe over the years it has made me stronger and more prepared.
Having said that, I have become acutely aware again of “living in between different worlds”. To the outsider who is not in the know, I, like many people affected by cancer, “look well”, going about my “normal life”. Yet we carry a special load. That goes the same for anyone with an “invisible” illness. But what also goes for all of us, is the potential for sudden frailty due to life changing illnesses or events.
Before I got the results of my scans, many activities I did took on the sub-title of “last time”… the last time I see my clients, sit in my therapy chair, wash my floor, water my plants, do my laundry …. I did not know what kind of diagnosis I would get and how long I may have to live. But I knew this was the last time I would do anything without knowing. The next time (if there was a next time) I would do it with more knowledge of what is happening in my body, and what the consequences of that may be.
I am relieved. But I will not underestimate the unpredictability of this illness. I will not take anything for granted.
And I will not start “the self blame” or “why now, why me” game. I have my moments, but overall this is the biggest waste of time, I cannot afford. I have done my best to limit the chances of the cancer returning. And I will continue doing exactly that. We all have to make our own choices and live with them.
For now, I will focus on gratitude and grieving. I am thankful for my breast, even though we may have not always seen eye to eye. I will miss her and I have decided not to replace her. I will wonder what will happen to her. I will start grieving with her for her – now. We will talk and argue and remember. But we have to part in peace. I will also need to think about her twin, who will be left behind and needs to be included in all of this.
This is new territory for me. I have decided not to read up on what other people have done. I have little time to prepare and decided I need to walk this path on my own and trust my own intuition and wisdom.
I have stopped working and will take a break for thorough recovery – physically, mentally and emotionally. I am hoping to continue writing, though at some point things may get a bit more quiet here, at least for a little while.
But I also have things I need to do and want to do. So watch this space.
As always, thank you for your kind support and my best wishes for you all.
(17th June 2018)
Update 1: 12th June 2018
My dog and I have cancer – what are the chances of that happening?
Dear readers and friends,
You may have noticed a greater degree of inactivity on my part and I had promised to let you know what is going on.
Here is a brief explanation and a bit more detailed video at the end.
A couple of weeks ago tests showed a local recurrence of my original (2012) breast cancer. I am waiting for results of CT and bone scans as well as blood tests, to see whether the cancer has metastasised and can be found elsewhere in my body (eg bones, liver, brain). Depending on the severity (stage) we will then decide on what to do next – depending on whether the cancer is treatable, can be managed – or not.
Since contracting chicken pox in December 2017 I had had episodes of new skin allergies, worse lymphoedema, and generally just feeling ‘odd’. Blood tests and physical investigations did not give my GP or the Breast Care team reasons for concern. But I remained unconvinced. I was finally offered further investigation and an ultrasound located something, which a biopsy confirmed to be cancerous.
While I am preparing for various possible scenarios, pausing my clinical practice as psychotherapist, doing what we need to do to avoid financial problems (eg the financial toxicity of cancer – ill health costs money!) and much much more, my trusted companion, Lilly, an 8 year old Staffie, was diagnosed with mast cell cancer. I had noticed a small red lump by one of the nipples. She had an operation yesterday and is recovering well. We are awaiting further biopsy results and staging of her cancer.
Pets and their owners can develop similar illnesses. And this is not the first time for Lilly and I. If you google the topic you will receive a number of explanations ranging from lifestyle and environmental impacts to emotional and spiritual connections.
I do not think it is a coincidence. I’d like to think these things happen for a reason. And I have my own way of looking at it.
It is interesting to notice, that many things I feared, currently feel far less threatening.
Sometimes in life, when things start to happen, you may surprise your self with your response. You may be a lot stronger than you think.
I am sharing this news with you now, after I have spoken with all my family, friends and current clients.
I will keep you posted and may continue to write and record some videos. It all depends on my news and how I feel.
I have recorded a video to explain it all a bit more.
For now, my very best wishes for you all.
(12th June 2018)