Sometimes you just have to take a deep breath and count to three…..

Yesterday was difficult and sapped all my mental and physical energy. My son and I met with the top radiologist at the Royal Marsden ( Centre of Excellence for Cancer Treatment). After an hour and half wait, in just a few minutes, we were informed that owing to the size and position of the tumour,  I was not a candidate for a newer type of radio called Cyberknife. This would have involved only a few sessions opposed to the normal RT which I am eligible for and involves many more visits to the hospital.  Last time following surgery,  I had 35 sessions of rads to my breast ( 2008)

Nevertheless, he would like me to speak with the head and neck surgeon ….

And so I was presented to Mr ‘Carver’, as I will refer to him in this post. I had geared myself up psychologically for the scene that was to follow: Here is a synopsis:

Setting: Dimly lit small visiting room. Enter elderly surgeon who smiles, takes a seat and proceeds to feel patients neck)

Mr Carver:  It is operable and I advise that we remove it which will greatly reduce the possibility of spread

Me: I thought it was inoperable owing to its position and that Neck Dissection was quite a complicated procedure associated with many side effects

Mr Carver: Cancer has clearly travelled up from breast so more nodes are potentially involved ( he feels lower clavicle and sighs)

Me: But could we…..

Mr Carver: It will be fine, two approximately 4cm cuts along you neck, through the muscle and we remove the chain of lymph nodes. Scars will be inside neck creases as much as possible and should heal quite nicely.

Me: Excuse me, Mr Carver, surely there are side effects if you remove lymph nodes, where will all the lymph fluid drain to?

Mr Carver: Oh, it will find a way through another route

Me: But maybe it would be better to wait a while and see if the hormonal drug Letrozole has any effect

Mr Carver:  ( looking straight at me) Would be better to remove as soon as possible.If  it continues to grow could become inoperable and treatment is always  more effective on microscopic metastasis… how about the 5th or 19th of July.?

And so  FEAR plunges into my world again: a world where I was learning to live and accept my unwanted friend in my neck……. but we were doing okay. A heated discussion ensued with my son who has clearly  been affected and ‘convinced’ of the argument Mr Carver presented. Surgeons are notorious for wanting to wield their scalpels and remove what they see as the problem ‘the tumour’. Gifted in their trade they are not, however, interested in the ‘source’ of the problem -

Although we are ultimately the owners and designers of our thoughts, it is interesting how these can be modified and completely influenced  by external stimuli;  I had convinced myself after discussion with my oncologist, that operating was really not an option…. to find myself now seriously debating surgery.

My mind returns to the sequence of events four and half  years ago: I never shared the fear, anguish and physical pain that I went through when first disgnosed. I basically just got on with life as best as possible and on the outside I certainly managed to do a good job. Unfortunately, it was the inside of me that was  hurting more that I knew.

Selfishly i think to myself that I don’t want to go through this again, I pray for strength but moreover, I pray for conviction in the choices I will ultimately have to make.

So….. deep breath one, two , three…

My reasoning takes me to making an appointment with another recommended top oncologist for a second opinion. Life resumes….

We use the expression ‘Life is short’ on numerous occasions; perhaps to justify a decision that we make, a purchase, a holiday, or a choice of lifestyle etc. Earlier on today I received the news of a death in the family and it has really made me reflect on how lucky I am …..even with the recent diagnosis of cancer. My thoughts go out to Luigi Viola’s family especially his two daughters Veronika and Valeria who are my son’s cousins.  He died without any awareness of death lurking as he celebrated his 60th birthday.

During the last few weeks I have projected my life into the future and thought about what age would be ‘okay’ to die. What a morbid thought: I have to see my son graduate so need another 2 years; want to be at his wedding ( little harder to predict!) have to meet my grand children………..at least another 10. And the bartering and exchange with ‘God’ goes on!

When we have a diagnosis of cancer, we automatically think to ourselves ‘ How long have I got’, ‘ I am going to die’ . Some of us read up all the statistics only to descend into a lake of doom from which we find it difficult to emerge

The truth of the matter is that we are all going to die …… and some of us, without cancer, are going to die sooner than they expected. Was the ignorance of not knowing bliss? ….. Probably from a certain point of view. But given the knowledge would some people make meaningful changes to their lives?

Anyway, this is how I am looking at my cancer ……. a visitor that has awoken a dormant fear of death, but that has also made me see my life from a different perspective.

When one door of happiness closes, another opens; But often we look so long at the closed door that we do not see the one that has been opened for us.
Helen Keller

Since the advent of the Internet and the WWW, I have become an annoyingly ‘Got to know’ type person: one of those that says ‘I’ll look it up!  …I wonder if I will tire of this relentless thirst for knowledge albeit rather limited : cancer

I realise and acknowledge that one has to be extremely vigilant when doing research online and check sources, but there is also a wealth of information to satisfy even the hungriest and so I read and read and learn as much as I can about cancer: both from the physical side to the most important spiritual element.

This post deals with the physicality of my tumour.

Treatment for my tumour , heavily depends on a number of factors: Hormone status and Her 2 status. We already know from the first biopsy that it  is Estrogen + ( 6/8)  Progesterone – and Her2 status seems to have changed from primary tumour which was originally Her2 +++ to Her2 -.  For this reason I have had a second biopsy: this is MY LIFE we are talking about and we need to make sure that there has been no human error involved as in theory the tumor could have both Her2+ and Her2- cells.

During the procedure I was informed that:

- there are two other nodes that look cancerous keeping the ‘big node’ company

- the ‘big node’ seems to be content at the moment and does not appear to have grown since last biopsy late May

I am okay with this news but eagerly await the results of the HER 2 status as of course, this could mean ‘Herceptin’ again but would also indicate a much more aggressive tumour which is already Grade 3 ( poorly differentiated and cells divide more quickly)

Taking a deep breath and closing my eyes I say to myself:

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference

Getting down on my hands and knees to ‘pray’ is now a daily occurrence. It starts the day off positively, summoning all the strength, courage and also acceptance that I need, especially on difficult days like this one. Today I  found out the results of my bone scan. I had one done recently last December, but in light of cancer in my neck nodes Prof thought it best to repeat the test.

I try so hard to think positively but surprisingly, throughout this journey, I have harboured consistent negative thoughts: ‘It will come back’, ‘Just a matter of time’, I know I will die from it’ ……I know that if I am to rid myself of this cancer, I will need to change my thought patterns ( amongst many other things) It is almost as if I prepare myself always for the worst case scenario so that the shock is less. BUT it never is and that just means that I am thinking negatively the WHOLE time.

Anyway, my bones are clear but ( always a but….) there are a couple more nodes in my neck involved. This definitely means that surgery is not an option, as the risks are too high. I remember the first time round, I just wanted the tumour OUT!!  The psychological effect of wanting to  remove it from my body was so strong. I suppose that is understandable: A quick fix but in the sisterhood, we know that this is not the case.

So now, I have cancer in my body and for the moment we are living a symbiotic relationship. It ( must give it a name soon!) is content where it is and me, the host, is not suffering for the moment.

I have been put on Femara (Letrozole) to block out my estrogen which is supposed to help tumours grow if they are hormone + and have aching joints, but in the scheme of things, a small price to pay for a possible remission.

It is the uncertainty that dwells on the mind and makes so much ‘NOISE’ that sometimes it is difficult to carry out normal daily tasks. I find it extremely difficult to concentrate even watching TV has become a struggle. I have become a permanent Internet surfer…… searching, searching for answers. I do know that some conventional medicines can help but ultimately I know that the answer is inside of me and searching for that, is a lot harder than pushing the button on Google.

‘Cancer is a word, not a sentence’ – John Diamond

I started this blog on the 7th June following confirmation of tests that my breast cancer had come back in cervical neck nodes. It has been a really difficult week …. so many emotions. The underlying one was FEAR as usual. 

I was originally diagnosed in 2008 with IDC 1.5cm, 1positive node out of 11, Her2+++.

Had everything on offer at the time, lumpectomy, chemo, radio, herceptin ( 1 year) tamoxifen and have been feeling great. LIfe was good…..at least that it what I believed. Physically I was doing well and fear had subsided to a certain extend but the ‘negative’ mind set remained. ‘It will come back. just a question of time’. I would repeat this endless times to myself. Eventually, it did return……. 

Then I read that there is no cure….. but I am convinced that treatments are so much better now and more than anything, I believe in the importance my thought, emotions and attitude play in helping to keep this beast at bay: locked up behind bars for life, wanting to appeal but refused bail and ultimately a possibilty to return.

Starting this blog for all breast cancer survivors. This is what we all are: those recently diagnosed, those under treatment,those that may never see this blog because they are all out there busy living, those that have been recently diagosed a second time with a recurrence; those that have now metastatic spread.

At the moment, if you are reading these words, you are a survivor.