Apologies to anyone following this blog who I don't have regular contact with, I assumed everyone has lost interest in my little story and therefore lost the drive to write anything. However I realise I kind of left things hanging with my ear/ eye saga so felt I needed to fill that in. I also think writing is pretty good therapy, I have found it to be so far.
So, first things first, I am feeling well, slightly tired, but really, really well considering everything. We've had a wonderful summer so far and are looking forward to two weeks sailing the Cornish coast, we leave on Saturday. Since last writing Adrian and I have been racing on a 40ft yacht courtesy of Sail for Cancer, it was a great day. We've been camping in the Cotswolds and in Purbeck. We had a big BBQ at our house to celebrate the end of treatment. I've been on a 2 day retreat with others recovering from Cancer. I've been to Birmingham to meet an amazing group of ladies who I have been in contact with online since the start of chemo, we all went through chemo at the same time and are all between 25 and 45. They have been a great source of strength and support. We've spent time with friends. We've spent a LOT of time watering all the vegetables we're growing but enjoyed the fruits of our labour. Its been a busy, busy month but crammed full of all good stuff.
Unfortunately the good stuff has been slightly tainted by the constant reminder that although treatment is over, it's not the end. Don't get me wrong, I am delighted to be through all the treatment, I'm looking forward to starting my TIny Talk classes again in September and settling into some form of 'normal' life again. But the naive view I had at the beginning of all this, that it would be 9 months of hell and then all over and back to 'normal' is so far removed from reality its laughable in hindsight. I realise this is the view most people who have not had cancer hold.....you get through treatment and if you are in the 'lucky' group you get to return to your life and LIVE. If only it were so simple. The drop of another NHS appointment letter through the door has become a bit like a slap in the face. Each time my heart sinks....I open the letter, praying the appointment will be at a convenient time and I can get the children looked after. It's been a sick joke this past month. Some of this (in fact most of it) is due to my eye thing so I can't really blame cancer, but the point is, even if you could forget what you had been through, you can't because you have people prodding and poking you for years to come! There is no more 'normal', not the way it was before. I am finding a new normal, that will take time, and that is totally OK. I feel I want to try to describe it so people can understand, don't say to someone who has had cancer 'you can forget about it all now and get back to normal'.....they might feel like punching you!! That's not to say I feel sad or regretful that my 'normal' has been changed, in fact, quite the opposite, I can start to appreciate the positives the experience has given me. But my life has been irreversibly changed in many big and many small ways and so, of course, I can never forget, nor would I want to. However, I am delighted to be done with treatment and I feel strong, happy and dare I say, healthy!
The small fly in the ointment of the end of treatment is the fact that I am now embarking on a new health saga. This is where most of you will be 'ok, enough's enough, you're better now...the end' and please, feel free to stop following my story now, I certainly wish I could! So, my ear lump, which was thought at the time of removal to be a cyst, was, in fact, a neuroma (nerve tumour), specifically a Schwannoma. Wow, big surprise, not what I was expecting, especially as I have at least 5 more of these little beauties on my left ear, all very painful when touched. The question everyone asks - is it cancerous? No, its totally benign, phew, and unrelated to Breast Cancer, double phew! Chances are though the thing behind my left eye is also a Schwannoma. Having more than one of these very rare tumours is not something that happens by chance so I now have to go back to the neurologist to see how this effects how they might treat or monitor the one behind my eye. With my vague memory of neuroscience/genetics from University, to me it seems likely I have some flaw in a gene somewhere controlling tumour supression - this would link the fact I have these neuromas as well as breast cancer at an early age. I have seen a genetics person but I am not able to be tested for the BRCA gene mutation (these are two genes that have been identified in causing Breast cancer) as I have no family history. However the person I saw did say it was likely my Breast Cancer was genetic in origin and my children would be screened from an early age. She was more concerned about the Schwannoma situation. Basically I either have 'Schwannomatosis' or Neurofibromatosis 2 (NT2), my pathology report from the ear will be looked at by a specialist team in Southampton and they will make a diagnosis. It seems unlikely I have NT2 as I have no other symptoms of they defining tumour in NT2 which is an acoustic neuroma, but I guess I may have to have more MRI scans to rule this out. I wait with baited breath for yet another NHS letter. Neither diagnosis is particularly great but Schwannomatosis is the lesser of 2 evils as NT2 carries with it the risk of malignant tumours and more complicated brain tumours. I know it all sounds a bit crazy off the back of a Breast Cancer diagnosis but I've had these nerve tumours for years with no problems, it's just unlucky co-incidence that they have come to light at the same time. So that is where I am up to. I now have to go to the eye hospital every 2 months to ensure my eye itself is not effected by the growth of the schwannoma behind my eye......yet more dreaded appointment letters!
So there, consider yourself updated! I don't see the neurologist again until the end of September so I don't expect to hear anything else before then but I will update you if I do. I don't intend to dwell on any of this too much, I have learnt by now not to worry about things you have no control over or make assumptions that my well be wrong. For now I'm enjoying the rest of the summer and hope the dry, warm weather returns for our sailing adventure.
