Since my last update there have been some rather happy happenings and experiences in my world and I’m pleased to say there’s more mischief on the horizon for me too !
Through the dark days of Chemo, I made a number of decisions and plans that are now coming to fruition and this feels quite satisfying.
In January I was feeling physically and emotionally broken after 6 months of chemo treatment and with a lifetime of uncertainty, side effects and targeted treatment ahead of me , I knew then that I would be thanking myself later for making such plans, however not realising until now how fundamentally important those plans were to my ongoing emotional wellbeing. These plans have not been without their stresses but they represented hope that I needed.
At the end of March I sold my house and moved with Reuben to live temporarily with my friend Julie and her fur babies, Cassie (my favourite), Freckles (Julies favourite) and Oscar (chief head bumper) . I am still there waiting patiently for our ‘forever home’ to be built and made ready for me and my lil’ love bug at the end of July. This is 4 weeks away now and I am beyond excited!
On the 19th April I started out on 3 week trip to Borneo, Singapore and the Maldives, all squeezed in between treatments ! I travelled alone as part of a tour of 7 in Borneo and went completely solo in Singapore before meeting Di at the airport for R&R in the Maldives! I had wondered if I had ‘bitten off more than I could chew’ , but the whole experience was so emotionally enriching, and I was able to enjoy it all the more because of the forethought to get the help from Matt my ‘coach’, to recover some strength and confidence following treatment. It was through Di’s invitation to the Maldives that I found the opportunity to create this trip of a lifetime and this ‘tussle’ with destiny that I’m having, made the experience particularly relevant.
As soon as the holiday was over, I returned to work on a phased return after 12 months away. It’s still early days’ , however I have made a strong start and I don’t believe that I would have been able to achieve this without the increase in physical fitness and the confidence gained from ‘ travelling with my eyes wide open’, being tuned into people, their cultures and absorbing the sights, sounds and smells. I have been realistic about the side effects of treatments and so I’ll be working 4 day’s of week for now.
In May I was also introduced to my newly born great nephew Oscar! I can’t begin to tell you how it felt going to meet him for the first time. I was eager to congratulate my niece, Melanie and Tom for producing such a cutie, but then to be handed said cutie, as if congratulating ‘me’ for becoming an Aunty … well, that was very special and I’ll always remember that. Thank you x
My experiences have also inspired me to create a charity called, living with living well, that seeks empower women with secondary breast cancer , to reclaim, improve and maintain their emotional and physical wellbeing. I’m very excited about it all and I’ll be blogging more about this soon.
Well, there you have it, if you were to ask me how I am, I would say with confidence, ‘I am good, thanks for asking’ and I would mean it and love that you have asked me.
BUT with Cancer there is always a caveat. Those wonderful, wonderful things that are happening do not cancel out the challenges of cancer, they coexist with a massive part of my life that isn’t ‘ok’, some parts directly related to cancer such as the daily physical side effects and others that are complicated by it.
I don’t always find it easy to say that ‘I’m not ok ….. I know this is partly due to the fear of feeling let down . I tend to suppress the true level of these feelings in favour of focusing on the positives in my life , and it’s probably not such bad thing , but it can feel quite lonely and is not an approach that I would necessarily recommend to everyone. I’ve never been one for practicing what I preach so inviting me to open up is likely to frustrate you as ‘I’m ‘ok’ thanks ‘!!!
With so much pressure from others to ‘look at the positives’ this can feel very isolating and my advice to those supporting friends and family with cancer, is to check in now and again on the not so good bits, and don’t always accept the instinctive ‘I’m ok’ at face value’. That’s not to say you should persist and make nuisance of your self, but I have found that when I have not been open to discussing the rubbish times , it has been comforting when I have ‘felt’ someone knows I’m not ok and cheerleads from the sidelines. My friend Gill is excellent at this … thank you x
Anyway , that was quite a long winded preamble to some not so great medical news. You may recall from previous posts that I was being referred to have the ‘rogue node’ under my left arm removed , well after 5 months of waiting and chasing for an appointment , I was finally seen by Mr Khan on 17th May . He was not happy about removing the ‘node’ and expressed concern after a physical examination that my cancer had progressed.
Because of the feedback I had about there being NED, this was a surprise, but not a surprise really if I think of the changes I have noticed. Mr Khan did not agree with Dr Jarrel , in terms of me being able to see and feel the ‘node’ /scar tissue because I had toned up.
By the time I saw Mr Khan, the lump on my neck, the one that alerted me to the secondaries in the first place, had also become more prominent by touch and sight, and he certainly wasn’t sitting on any fence when he declared that he thought that the cancer had become resistant to treatment. With Herceptin and Pertuzumab classed as a wonder drug combination , I was quite deflated that the cancer had become resistant so soon.
The mortality thing came sharply back Into focus for me and I tuned back in to feelings of loss and grief for my loved ones ….. all of course , whilst concurrently experiencing the great stuff in my life, such as joining the crowds at `Windsor for the royal wedding feeling a pressure on my self to enjoy life whilst I could. What a mind warp!
So, I returned to hospital the following day and had an ultrasound guided biopsy. I asked lots of questions and from the ultrasound I was told that the ‘cluster of cells’ was not a lymph node, or that the lymph node had been overtaken by cancer cells ….and that the samples taken looked looked suspicious.
I received the results of the biopsy on 25th May and learnt that cancer was found and that this was oestrogen positive. In terms of the next steps, this was for Dr Knighton to determine and I saw him the following week, (yes…more delays), and he started me on Exemestane , hormone therapy . This is taken in tablet form on a daily basis and the side effects were immediate , though I’m pleased to say that the head aches have subsided.
Dr Knighton confirmed that I had ‘clinical progression’ , which I learnt was diagnosed by what you can see and feel. Any further changes to my treatment plan will be dependent on the results of the CT scan I had on 18th June.
Dr Knighton is keen to keep me on Herceptin and Pertuzumab, as this seems to be working for the other areas , however there are ‘protocols’ and if the CT scan shows a 20% increase in size , another form of treatment, that may include chemotherapy again will be used ! Eye Roll! With only 6 months free from the side effects of the last lot of chemo, this has no appeal !
Dr Knighton described how there were more treatment options for me and that it’s a question of finding the right one for me. I hear this loud and clear , though the fact that there has been progression so quickly is not lost on me and I am scared.
I am to receive the results of my CT scan tomorrow on 22nd June …eeeek....
