Wednesday, 24 February 2016

A Brand New Me

It’s been a while since I composed a blog but I’ve been put under tremendous pressure by Amanda (as in every time I see her), to do an updated blog to let people know how I am. I haven’t felt like I have been able to do a blog, basically because I feel that people would like to be updated about Amanda’s condition, but she keeps on insisting that I must blog that I’m actually doing ok and it’s not all doom and gloom (Amanda’s words). By the way, Amanda is still doing amazingly well and continuing to make the most of her life by spending precious time with her family and friends and her days are mostly spent enjoying walks, spa breaks and eating delicious food. She has now even managed to start jogging again with her personal trainer which is a massive achievement for her. And of cause, as a good friend would, I have been accompanying her on the said walks, spa treats and eating delicious food…no jogging for me!

I am slowly regaining my life. Two years forward and I’m still dealing with the challenges that this period brings. My life generally has changed dramatically in the last two years since being diagnosed with breast cancer. For a start, I’m now the proud nana of two beautiful grandchildren and they give me hope for the future.

Imagine a roller-coaster. Some of you will find this an exciting and thrilling image: others of you will find it terrifying and beyond belief that anyone in their right mind would willingly subject themselves to the torment of being transported at high speed and with great discomfort in this manner. Some people find this a helpful image to represent the process of the diagnosis and treatment of cancer. On a roller-coaster, you are strapped in and sent off into the terror, knowing that there is nothing you can do about it until you emerge, wobbly and battered at the other end. You manage by getting your head down and dealing with it as best you can at the time.
It is only afterwards, when you are back on solid ground again, that you can look back with amazement and view what you have experienced and marvel at your courage. The end of the ride is equivalent to the end of treatment. And this is where we start - after the treatment has finished and at the point where you can begin, bit-by-bit, to deal with all that you have been through and all that is to come. You may have had to endure months of treatment by knife, chemicals or radiation until you are probably sick of the whole business. Now is the time to heal, both body and mind.

People have told me that as time goes on, the ‘cancer experience’ will be pushed further to the back of my mind. Well so far, this doesn’t appear to be happening with me, especially when people you’ve met on your ‘cancer journey’ have since been diagnosed with secondary cancer. Sadly, I now know of three other ladies who have secondary cancer besides my dear friend Amanda. It is also in the news especially the last couple of months. The thought that cancer will return is always at the forefront of my mind. It’s a matter of trying to carry on and not live in fear but always being aware that life is so very precious and we should all make the most of every day.

I am over 18 months into taking Tamoxifen. I have gained weight that will not budge at all though that could be to do with the amount of delicious food I’m eating with Amanda!                                   
I have been experiencing constant hot sweats since I started my first chemotherapy session which is almost two years ago. Sometimes they dwindle for a few days and other times (like now), they’re back with a vengeance and I spend half of the night doing the bedroom hokey cokey…left leg in, left leg out, whilst covered in a hot, sticky film of perspiration (not very glamorous at all).
A fairly common experience when people become frightened by unusual and unexpected changes in their body is that they wonder whether it’s a sign of the cancer returning. I’ve realized that this is not an unusual or an illogical thought to have - it makes sense. You notice every ache or pain. I am currently experiencing very painful knees. If I’ve been sitting down for any amount of time, I walk like I’m about 90 years old when I get back up. I have researched ‘menopause’ symptoms as I have been told that I was thrown in to it rather dramatically as soon as I started chemotherapy and that Tamoxifen just adds to the many symptoms. I know that classic signs of menopause are in fact aching/painful joints.
Before my diagnosis, I would have thought briefly about it, perhaps decided to ignore it, perhaps found an explanation but dealt with it without very much additional thought. This all changes after your diagnosis because the possibility now exists that this might be a sign of something more sinister which cannot be just brushed aside. This much is quite understandable and no-one can tell you that your worry is silly or unrealistic.
The aim is get a sense of balance that you can live with, without your fears dominating and overwhelming you. You can do this in a number of ways. You can ask yourself if you have had a pain/symptom like this before you were diagnosed. If so, try to remember what it was caused by and what you did to manage it. You may also need to remind yourself that many symptoms have more everyday causes than cancer - a headache, for example, can be due to dehydration, lack of sleep, tension, that extra glass of wine last night. It can be helpful to think of other causes before including the possibility of the cancer's return. In going through a process like this you may well find that you feel in a bit more control of your fears - those fears may still be there but they may feel less overwhelming. This process is simply taking your fears seriously by acknowledging their basis in reality, but then dealing with them in a direct way.

One of the many possible consequences of treatment for cancer is a changed body - either temporary or permanent. Such changes can be very obvious - such as hair loss during chemotherapy, the loss of a breast; less obvious to others - a reconstructed breast (me). All such changes are likely to affect how you feel about yourself and how you relate to your body and to the outside world. So to be worried about wearing a wig or a headscarf or prosthesis makes sense - it’s about how we see ourselves and about how we present ourselves to the outside world. Your partner may express no concerns about your surgery scars, but if you feel that it is disfiguring then that feeling will over-ride any reassurance that others may offer. I still feel very self-conscious about my reconstructed breast. It’s taking me quite a while to get used to this new me. Some people may struggle with the issue of a part of their body not being ‘theirs’. This is fairly obvious when it comes to wearing a wig, however life-like or true to your own hairstyle it is. You are always aware of it, it may be uncomfortable in hot weather, you may worry about it blowing off in a wind or being awry so people notice it - you are never as relaxed with this addition to your head as you will be with your own hair. For some women the new breast may not feel as if it is part of them, even if it is a part of their own body that has been used. It may feel just a little bit unnatural, especially at the beginning. Again, two years on and I still don’t quite feel myself. Yes my hair has grown and in quite a nice style, I’ve even gone as far as having coloured foils and I guess I’m slowly coming to terms with my new image.

In general, I feel relatively well. I rarely mention the days of breast cancer to anyone other than Amanda or to the ladies that I’ve met at a Breast Cancer Support Group.  For anybody reading this blog who lives in the surrounding area, this support group is the only one of its kind in Stoke on Trent. Please come along and chat to a lovely group of women who are all connected through having breast cancer. We are all very different in terms of grade, stage, surgery and treatment but we’re the same in another way…we’re all survivors.

My outlook on life is now very different. I don't have a 'bucket list', instead what I have got is my 'travel to as many new places as I can list'.. Last year, we went to six new places that we had never been before, even weekend city breaks count. So far this year, we have been to one new place, Gran Canaria, and next month we are travelling to Barcelona for my 47th birthday. I'm looking forward to each and every new trip on my life's journey and also aiming on beating last year's amount of trips.


Thursday, 18 February 2016

You do the math(s)

Apart from some pretty heavy duty insomnia, memory loss and impaired mental function I'm actually doing OK for someone who is approaching their 'expire by' date. So I thought I might try to apply some logic to my current situation, partly for my peace of mind, and partly for some clarity for those who read this blog. 

So from November 2013, the sequence of events has been as follows:

10th November 2013: Find lump
12th December 2013: The glamorously named 'Lumpectomy' takes place
24th January to 7th March 2014: Chemo one to three - FEC (what felt like interminable sessions of intravenous poison administered via giant syringes)
28th March to 9th May 2014: Chemo four to six - Docetaxel (as above but with added baldness and agonising muscle pain)
21st June 2014: End of three weeks of radiotherapy - like water off a duck's back
15th May 2015: Diagnosis of secondary breast cancer to the brain (although I knew it could happen, this did completely knock me for six - tough times indeed)
End May 2015: First brain surgery (apart from a vicious twenty four hours after surgery, I was walking round a local beauty spot twenty four hours after that and felt great)
Mid July 2015: End of intensive three week period of whole brain radiotherapy (unspeakably painful and seemingly unending,the worst treatment of all)
August 2015: After all this, the tumour came back at exactly the same size as it was before although now I am completely bald, weak as a kitten and constantly vomiting (feeling a bit sorry for myself at this stage) 
August 2015: The pugnacious growth is then removed again and although there is some impairment, I am OK
13th October 2015: Discovery of pulmonary embolisms due to inactivity (the irony!)
21st October 2015: Terminal diagnosis received but as of my last scan my tumour had not returned

So this brings us right up to date. 

I'm feeling OK. And as it's hard to believe that my health could deteriorate quickly, I'm cautiously making the most of things even more than ever. I recently watched a TV programme featuring Rowena Kincaid, one of my cancer contemporaries and although she's not in the best of health, she is still with us and living life to the full (as much as constant treatment will allow). (programme available to view until mid-March 2015 via this link >>> )

Like her, I feel like this really can't be the end. So I've done some calculations. According to my oncologist, my diagnosis from 21st October 2015 was "months, not years", however according to Cancer Research UK, for someone like me who is healthy (comparatively), young with a single site tumour and no metastasis, (all comparative bonuses) this could be up to 13 and a half months as a best case scenario. So all this number crunching would bring me to the 4th December 2016. I just need to make the most of my time until then and who knows, maybe even push it further to sneak in an extra Christmas. Now doesn't that sound like a beatable target?

Transcribed by Dean for Amanda. 

Thursday, 11 February 2016

The new normal

Life has settled into a little routine and for that I am grateful. However, there are still some complex challenges. Dean and his lovely sister Kath are providing pretty much round-the-clock support for his Mum. She's in a lot of discomfort and and it's heart-breaking for his Dad and the whole family.

I'm feeling OK and have been taking walks in the fresh air as the weather has improved. As always it's been just amazing to be supported by my friends and to spend precious time with them: old and new. To those who are not in my shoes, it's difficult to explain how you can feel peaceful in this situation but trust me, you can. I feel like every sunny morning, every laugh with a friend and every minute with my family is like a gift from God.

Speaking of which, on Thursday, Dad and I went to a healing mission in Costa Coffee (believe it or not). We were prayed for and I felt really uplifted. 

No-one can determine how long they have to live; clearly there are standard expectations, but many of my cancer contemporaries are still going strong, so I pray that I will follow their lead. Whatever happens, I am grateful to have had plenty of time with those I love.

And to finish, this is as accurate a representation of my hair as you're ever going to get...(half new born monkey, half coconut).