Rant alert

I read with interest this week, the coverage of Noel Edmonds talking about cancer and negative energy (read more here >>> http://www.bbc.co.uk/news/uk-36470979). Whilst everyone is entitled to their opinion, I was saddened to hear his views. What upsets me is the implication that I am in some way responsible for my cancer. I have been tee-total and smoke-free all my life, been pescetarian for the last ten years and always been fit and healthy, exercising regularly. I've also been a person with a great deal of positive energy and a strong faith. So I find it very difficult when people attempt to attribute my illness to "lifestyle factors" or attitude.

The fact is, that only half of us will survive cancer for ten years or more. It's ridiculous to hypothesise that only those with a positive attitude will make it. Early diagnosis, aggressive treatment and sheer good luck are the real influencing factors in determining which half of us will make the cut. There was nothing I could do to avoid having terminal cancer at 42. All I can do now is be grateful for every laugh, every prayer, every moment with a friend. I may not make it to the ten year mark but I sincerely hope to be lucky enough to enjoy what time I have left.

Amanda

Race for Life

Tuesday night was an emotional one for me. It was the Race for Life 5k at Trentham Gardens. Two years ago I went to the same event. I had about three small tufts of hair on my otherwise bald head and was unsteady on my feet. Some women clapped me as they passed, but most notably a complete stranger came up to me and squeezed my hand. I was so moved that tears were rolling down my cheeks.

Yesterday was equally emotional. I was struck by the women's strength and power as they flew past me to the finishing line. I was also swallowing back the tears at the complex web of love, friendship and remembrance that surrounded me. A little girl was wearing a T-shirt with her late Dad's face on it and others had several names on their backs. Everyone was dedicating their efforts to someone.

Most of all I was struck by the sense of camaraderie that the event created, not to mention the amount of money raised. I also had a fleeting thought that next year in all likelihood I would not be there and I would simply be a memory pinned to the back of one of the runners.

Well done to everyone who took part in this extra special event.

Amanda

Do not worry about tomorrow for tomorrow will worry about itself

Periodically over the last few weeks, I have had some bouts of sickness and some dizziness, coupled with the most hardcore sleeps. There's no immediate cause for alarm, however, it's difficult not to let the occasional worry slip in. Being terminally ill is an odd concept. You're still you, feel like you and are prone to everyday concerns like you always were. But there is now an extra dimension to the worries.

So I have two ways of allaying my fears. The first is the medical route. I have an oncology consultant and a surgical team investigating my progress and have appointments with both coming up. The surgical team are the more optimistic of the two and once I have my scan results, they will decide whether (a) I am in the same boat as the last scan - a wonderful option with no further action at this time, or (b) there have been some changes to my brain and there is a new/enlarged tumour which will need action (perhaps more surgery, possibly cyber-knife).

With this route, I will have all the facts at my disposal and there is something reassuring about knowing what's what, whether it's good news or bad.

The second route (which is concurrent to the first) is about relying on a powerful combination of faith, hope and love. My faith will guide me through, regardless of the outcome, I will never lose hope despite the bleakest of prognoses, and the strongest of all, love. The love of my friends and family lifts my spirits and for that I am truly thankful. So for now I won't waste precious time worrying, and instead be grateful whatever happens.

Amanda  

P.S. Please pray/hope for option (a)

It's the 3% that worry me

An unusual birthday

This week I celebrated my birthday. Now, my usual 'modus operandi' is to engage in as many social occasions as possible and extend my birthday for as long as it is seemly/practical to do so. I love everything about the day* from the birthday cards and presents through to the Facebook greetings.

*week and a half if I can get away with it

This birthday was, as you would expect, a little unusual. I was away for a start. This gave me the sensation of doing things differently to usual; the weather was lovely and we enjoyed a couple of nights away. There was little time for reflection and lots of time for hotel breakfasts, seaside walks and lots of laughs.

But there was also the awareness that this, according to expert medical opinion, would be my last birthday. It's hard to imagine this as generally I feel pretty well (apart from an irritating cold over the last few days). I'm still suffering from forgetfulness, seizures (although these are under control with medication), mental impairment and my confidence in a Samson-stylee seems to have been lost with my hair. *HAIR UPDATE* Quite frankly it looks hideous. It's an inch and a half long, you can see my scalp through it and it curls up into mousey brown frizz if I am in contact with any type of moisture. Plus my cheeks are in overdrive to compensate.

However, I genuinely feel like I'm going to make it to my next birthday. If I don't then that's OK. I've been blessed beyond belief. But many of my fellow cancer chums are still in the game, so as long as I keep opening my eyes each morning, then that's got to be a good thing.

Amanda

Embrace the wrinkles, others would be delighted to have them

Support Groups

Receiving a cancer diagnosis is more often than not (personally speaking) a complete bolt out of the blue and can trigger a strong emotional response. Some people experience shock, anger, and disbelief. Others may feel intense sadness, fear, and a sense of loss. Even the most supportive family members and friends cannot understand exactly how it feels to have cancer. This can lead to loneliness and isolation.

Support groups allow people to talk about their experiences with others who are living with cancer or who have come out of the other side after finishing treatment for cancer. Group members can share feelings and experiences that may seem too strange or too difficult to share with family and friends. And the group dynamics often create a sense of belonging that helps each person feel more understood and less alone.

Support group members may also discuss practical information. This may include what to expect during treatment, how to manage pain and other side effects of treatment, and how to communicate with health care providers and family members. Exchanging information and advice may provide a sense of control and reduce feelings of helplessness.

Groups may also be designed for specific audiences, including:

·         All individuals with cancer

·         People with one type of cancer, such as breast cancer or prostate cancer

·         People of a certain age group

·         People who have a specific stage of cancer

·         Caregivers, such as family members and friends

You may not be interested in joining a support group or find that support groups are not helpful for you. I did not want to join a support group when I was going through my treatment, I wanted to get my treatment over and done with and didn’t feel like I wanted to talk to people I didn’t know. For me personally, the best support was talking to people I already knew who had been through a cancer diagnosis. And of cause, my very best support came from Amanda. She was always at the end of the phone whenever I needed her and I was for her too, even if it was to just have a moan (which we did often).

It was only through meeting another lady through a mutual friend, who had also had breast cancer that I started to think about a support group. The lady in question decided to set up a breast cancer support group which is incidentally, the only one of its kind in the area that Amanda and I live. 

Breast cancer survivors bring personal experience to support groups they organize. For example, a cancer survivor can help those who are newly diagnosed know what to expect. But because many breast cancer survivors have not had support group skill training, they may not always know how to respond to difficult group situations. At the same time, even without official training, people who've had breast cancer often have enough life experience.

The meetings I now attend are once a month and I have met a wonderful group of ladies who are at all different stages since being diagnosed with breast cancer. Some ladies are a few years down the road, some are still having treatment and some only needed an operation and no follow on treatment. Sadly, some now have a secondary cancer diagnosis and some now have terminal cancer.One thing we all have in common though is that we were all diagnosed with breast cancer.

For me, this support group is now a place where I can go and we can chat about our hopes and our fears because once you’ve finished your treatment and started to make the slow recovery to your ‘new normal’, most people will find that family members and friends very rarely mention your ‘cancer time’ yet for us who’ve been through it, we still live with it every day. The group of ladies who I meet up with every month all know exactly how I feel because we’ve all been through the same experience and no matter how good friends and family are, they will never know or be able to fully understand how we feel.

The support group that I go to also has something going on every time we meet. For instance, we have had representatives from the Douglas Macmillan Hospice, we have had a doctor giving a talk on mammograms and how they determine who is recalled etc. We have also had ladies there who offer massages and therapeutic treatments so every monthly meeting is different. The one constant at every meeting is that we have tea and cakes so that's got to be worth going for...

If you’re still having treatment and don’t really want to consider joining a support group just yet, then consider these other sources of support:

·         Talk with a friend.

·         Get individual counselling

·         Ask a doctor or nurse specific questions.

·         Participate in activities that you enjoy and that allow you to connect with friends or family.

Whichever form of support you decide to choose, it will be what is right for you.

For more information on the support group available in Stoke on Trent:

http://www.pinksisters.co.uk/

Debbie

Approach with an open mind

Today I was lucky enough to attend an event where two of the speakers had previously been privy to my open brain.

The event was designed for people living with brain tumours predominantly and I received my invitation as I'm in the unenviable position of having cancer as well as a tumour. Although it sounds like heavy stuff it was actually an unexpected treat.

There were Consultant Neuro Surgeons, Clinical Nurse Specialists, Consultant Oncologists and even Neuro Psychologists all sharing their knowledge. There was a discussion panel, presentations and lots of support organisations offering everything from complementary therapy through to specially trained store staff from Boots The Chemist.

Here's what I retained from the event:

1. There are specialists in conducting brain surgery (a craniotomy) when you are awake! Sounds scary but is apparently the best way to test your responses in certain situations where this is needed.
2. Boots have a national network of Beauty Advisors to help people with life limiting diseases like Cancer to feel better about how they look and feel. Even with my chimp hair.
3. Complementary therapies can be used to help tackle the physical and emotional aspects of brain tumours. This can be anything from reflexology to massage.
4. Those with serious illnesses can have their eggs frozen to help them with loss of fertility further down the line (much further in fact as they can last up to 40 years)!
5. Finally, and most importantly, there was an over-riding message from all the speakers and exhibitors that even people with life threatening diseases can access the right sort of help and live a life that is fulfilling, even trying something new so you're not judging yourself on your previous performances. 

Thanks to all who took part.

Amanda

Well, not literally obviously...

Guest blog from Amanda's friend, Charlotte

Two and a half years ago, I received a text from my best friend which shifted my world on its axis. The text said 'it's probably cancer. And it's probably spread.'  Since then I've struggled to make sense of Amanda's illness (futile, because it doesn't make 'sense') and I've struggled with how best to navigate our changing relationship.

When Amanda was first diagnosed I spent a lot of time online, hoping I would find some 'answers'. As common sense would have told me, reading factual information on cancer charity websites can be useful if you're someone who likes to know 'what you're dealing with'; trawling through obscure summaries of medical trials or out-of-date message boards until midnight, evening after evening, not so much.

I did search for, and find, tips on 'how to be a good friend to someone with cancer'. My visions of turning up on the doorstep with a fully prepared meal plan to nurse Amanda through chemo were perhaps a bit unrealistic, especially since I live more than a hundred miles away, but I did find practical, sensible advice on sites like this:

http://www.huffingtonpost.com/suleika-jaouad/cancer-advice_b_1290008.html

And this: 

http://www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/if-someone-has-cancer

One of the things I've found most resonant is the exhortation to 'be an equal opportunity listener...make it clear you're prepared to listen to the good and the bad'. I remember Amanda telling me she found it easier to talk about death with an acquaintance from church, rather than with family and close friends, as the prospect of her dying was just so painful to those who loved her most.

And the instinct to jolly things along, to reassure, to look for the best in the worst of situations, is a very strong one.  When I would first talk about Amanda to (unfailingly kind and sympathetic) colleagues and friends who didn't know her I'd be struck by the number of people who said things like 'well, as you say, at least they caught it early' - when I hadn't said anything of the sort; there are stock platitudes people use in conversations about illness, especially cancer, because it is just too difficult to have the real conversation.

Conversely, after Amanda received her terminal diagnosis, a few people told me they were worried about visiting Amanda in case they broke down completely.  On that point, I could reassure them - Amanda had already told me she didn't mind at all - in fact it showed her how much people cared about her.

It's not like that for me. In my quest to be strong, to 'be there' for Amanda, to be an exemplary friend, my coping mechanism has been to switch off my emotions to some extent; to remain resolutely dry-eyed and practical. I cry more at the Archers than I do about Amanda. I worry this is unnatural. I worry Amanda will think I don't actually care as much as everyone else (although now I think about it, I'm probably behaving much as she would, were our roles reversed).  I do care. I just can't quite take the whole thing in.

I didn't anticipate how the dynamic of our relationship would change. I'd always assumed that Amanda and I would remain friends well into our old age. But recently there have been moments when I've seen Amanda's illness take its toll, like when Amanda's asked me to count out change from her purse or when I've given her my arm to walk her across a car park, and I have had the disconcerting sensation that time has sped up for Amanda, and she has fast-forwarded many decades without me.

It also changes things to have our relationship mediated through Amanda's husband Dean, who is her social secretary extraordinaire, in addition to all the other ways he cares for, supports, and nurses her.  Dean arranges Amanda's diary, answers emails, types messages, etc, as these things have become difficult and time-consuming for her.  Amanda has always made such a point of being independent that her reliance on someone else, even when that someone is the husband she adores, is always slightly jolting. It's strange to be at one remove from her when for so much of our friendship, we've been a bit of a double act.

I used to get regular breezy voicemails from Amanda 'just calling for a catch up' as she drove around from one social engagement to another; I can still hear the very tone of voice she would use, but I don't get those messages any more.  I rarely used to answer my phone as I'd always have it on silent or charging somewhere, which I'm sure annoyed her no end; now I wish I had.

And yet, and yet. Amanda is still here, and every time I see her, I feel better, as despite all that cancer has thrown at her, she is still so recognisably herself. At the moment, the cliche that we should 'live every day at a time' seems like the truest advice of all.

Char

Note from Dean : Apart from some sickness and challenging insomnia, Amanda is doing well.