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.

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.

http://pinksisters.co.uk

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.

Debbie 

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 >>> http://www.bbc.co.uk/iplayer/episode/b071fb66/before-i-kick-the-bucket-the-whole-story )

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. 

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).

Amanda