Taking Control of My Cancer Journey - Pt 1

When one is diagnosed with cancer, everyone starts talking about "the journey" that has begun.  We hear "my cancer journey" stories and are told about what to expect during our own journey.  I describe it that way too, even though it is a journey you never asked to embark on and is, in real terms, the disease equivalent of an extended trip to Baghdad.

At first, there are the tests. First time around, these are performed with a good spirit of optimism and hope. You are told about your personal prognosis and the chances of your cancer returning. That is fear number one. It eclipses everything for a very long time. Every ache, pain, twinge or niggle and the fear raises its ugly head. Once you have a cancer diagnosis, that fear will be with you forever. 

My initial Tour Guide for the journey, my Oncologist, the first time I had treatment was lovely.  She approached treatment in combination, of me as a person and the cancer as an entity.  It was a good approach, I felt that I had an input into the chemotherapy element of my treatment, with a review before each cycle, of how I had coped with the last one; what the sickness had been like, etc.

Following the commencement of my second 'journey', when I was diagnosed again in July 2011, I had a new Tour Guide/Oncologist.  She didn't know me at all and we had to start our relationship from scratch.  She was a lovely woman, who, as with most Oncologists and health practitioners had a large caseload of patients, all with different variations of this horrible disease.

We had some differences of opinion.  One of the very first things she said to me when I attended my first appointment with her was...

"I am approaching this on the basis that we will manage it for as long as possible."

Now, I may have been wrong, but that screamed out to me, "You are going to die from this!"

I immediately responded with, "No!  I am approaching this on the basis that I am going to beat it and it will go!"

That first sentence absolutely terrified me.  It made me believe that I had little or no chance of beating the cancer; that the cancer was going to win.  Who knows, it may eventually do so; I may get hit by a bus, but I do not walk around every day with that fear hanging over me either - even when I increase the risk of that happening by crossing the road without a little green man to guide me.

I was 39 when diagnosed for the second time.  My children were now 12, 9 and 7, I had every reason to fight, no reason to concede anything.  I needed to be seen, and treated, as that person; not just as 'breast cancer recurrence to chest wall with spread to supra/super-clavicle lymph nodes' - I needed that same combined approach.

I also understood more this time.  I knew I could have more of a say in my treatment and this time, I insisted on it.  Doctors generally do not have time to sit pouring over research papers for each individual case they are treating.  I did though.  So that is what I spent my spare time doing.  I read about recent advances in treatment for breast cancer, case studies of surgery for chest wall recurrences and I investigated what the possible options for me were.

This helped me feel much more in control and positive.  I would build myself up into a fearsome warrior and picture myself kicking cancer's ass.  I actually felt like I was putting on my armour and getting "battle-ready" every day. I also loved that my dear friend Claire Spencer (@thedancingflea) came up with the hashtag #FighterTChee on Twitter.

I would go to each appointment with my Oncologist, armed with information, papers and questions.  I asked about drugs, surgery and what else I could do that would help.  I cried. A lot. I was battle-ready but I was also absolutely petrified.  I hated.  I hated that cancer had come along again to wreck things, but I could not wallow in that hate.  I had to channel that negativity into something that would be more helpful; into the fighting spirit that would get me through each day at a time.  It was exhausting, but absolutely necessary.

Every day, I was reminded of why I had to fight, why I must survive.  I still am and I still fight, thankfully not as intensely as during chemo, but now, that battle will be one that I am always a part of.

...Next time, I will update on the amazing Mr Papagiannopoulos, (Mr Papas) who nurtured my fighting spirit and helped me incredibly.

Still Standing and Looking Forward

Well, it has been over a year since I last blogged on this account.

It has been a long year and so much has happened.

Everyone knows that I am a huge fan of our NHS and I know that if it were not for the NHS, I would not still be here today.  It is only because of the dedication of those Doctors and Nurses who fought for me and with me, that I am still around to give my children and husband earache!

I have a lot of non-posted pieces from the past year.  Things that I could not bring myself to post, but hopefully over the next few weeks, I will bring you all up to date with what has happened.

That said, I am (fingers crossed) ok.  Not fully recovered, but then, I'm not sure I ever will be now, whatever the cancer does.  The mental scars of having this disease, thinking I had beaten it, and having it return, are more than I think I can ever get over. 

I am having regular scans, my last one was in January and the next one is scheduled for September. I am finally losing the weight I gained during treatment - 4.5 stones gone now and at least another three to go, but it's shifting, which is great news.

What I do know, is that without the amazing support I have received from my husband and children - they really do rock my world, they ARE my world - my family, near and far; from friends, whether close, casual or just acquaintances and people who I only know, (or barely know) online, I simply would not have gotten this far.

So, to all of you, Thank you. You ALL make it possible for me to say I'm looking forward.

Support - Only what you can give.

The effects of chemo are not only physical. It takes a LOT of effort to focus and can often feel like your brain has clocked off - "chemo-brain" it's called. To give you an idea, I started writing this piece on Thursday last week, after chemo. Every few lines, my eyes would just close automatically and I would sleep for a while, before my eyes re-opened and I'd carry on, or not, if I was too tired. That is how things roll for up to a week after chemo, once in the final straight of the treatment cycles.

Now, before you read on, this post may sound harsh. I don't mean it to, but it may do. I stress that I am not aiming any if it specifically, the points I am making are quite general and completely understandable, they are drawn from comments I have had from other cancer patients as well as my own experiences.

I have mentioned many times how the support of my family and friends has helped to get me through this so far. It really has, the help from these people cannot be underplayed. I would do nothing to devalue the positive impact they have had on this awful time.

The problem is this...

When you first get ill with cancer, it is often hidden. You look, feel and are completely well upon initial observation. People rally, they offer help and support, they are amazing. "Anytime," "Anything I can do," "You only have to ask!" My friends have said all these things and stuck by them. I know other cancer patients who have not been so fortunate and have struggled with little or no support. Someone said to me last week that many people had offered her help knowing full well they'd never have to deliver on it. So sad. It does carry a valid point though. Only offer what you can or are prepared to do.

A friend who can only offer an occasional coffee and hand-hold but delivers on it is a wonderful thing. Equally, the friend who offers to drive you to chemo/pick the kids up/babysit and delivers on that is cherished too.

So, how does it work in practical terms? You have cancer, then the treatment starts. At first, the short-term recovery is manageable. I had a good first three cycles, where I took on things that people probably didn't expect I could. I had to though, that word "normal" pops up and it is so important to try and maintain a semblance of normality. Especially when you have children.

I have coped remarkably well with chemo but as it progresses, everything gets much, much harder. Thinking, concentrating, mobility, energy, mood. Eventually, after a few months of the toxic treatment infusing every cell in your body, you feel like crap. Absolute crap.

It is coincidentally, about this time that you also become incredibly bored by being ill and feeling crap. It is therefore only understandable that other people get bored by it too. Conversation is hard work, everyone has a busy life to be getting on with and slowly, the messages, visits and in-your-face-support, trails off a little.

People still remember how well you were looking and coping in the early chemo cycles (when you became "ill") and have no idea that now, you can barely raise yourself from the sofa in the days immediately after treatment. You don't sleep at night, then can barely keep your eyes open during the day. You are emotional, scared and have no control over any of it.

This is the perfect time for people to get into the "snap-out-of-it!" mode and expect you, now that treatment is ending, to start rejoining the world. Even though you are too exhausted to even talk on the phone. It is time you started to feel better and stopped "wallowing" in the misery of cancer. Because obviously we all do that. Ah, bitter-sweet misery.

The little considerations get dropped, "You'll be alright!" gets bandied about willy-nilly and you start to feel guilty for still being ill, after all this time. Surely, it's time that you tried to make more of an effort?

Support at the beginning is easy. It is after a few months and when you feel at your worst, that support is harder work for everyone around you. Coincidentally, this is obviously when you need support most. A friend who also went through this told me that as chemo finished, her partner expected her to just be ok again, like flicking a switch. I'm very fortunate that my husband understands but many cancer patients are not so lucky.

When chemo does end, it can take a long time for your body to recover. It has been battered by cancer, toxins and fear; mental and physical effects that cannot be conveniently wiped away in a brush-stroke. As much as we all would like them too.

For the person with cancer, support finally does become less necessary. They become less reliant on help and assistance, however, whatever stage they are at; whether their cancer is in remission, cured or being managed, they will never be absolutely, completely clear of it. The fear remains, long after the final chemo effects have eventually cleared.

A Very Big But...

Today was my last chemo cycle of this treatment programme. I am almost equally delighted and terrified. Having cancer and not having some form of aggressive treatment for it, is scary. I am in that not knowing phase, where everything is paused, while we await assessments and results.

Now, I keep saying I'm not going to complain too much about the side effects of chemo that I have been experiencing. Mostly because, while they ARE rotten, it really could be much worse.

You are waiting for the "but" aren't you? Well I won't disappoint, yes, there's a but. A BIG butt. Mine!

The only major complaint, among the lack of energy, tiredness, nails dropping off and general ugh-ness of chemo, is the massive weight gain, thanks to the steroids. Obviously the lack of energy plays a part too; I am unable to walk far at all and definitely not able to exercise.

After my first treatment of this cycle, I lost a stone! I thought that I was going to avoid the weight gain I suffered last time around, when I gained four stone in six months! Alas, from the end of November to now, I have gained two stone! I have my blood taken the day before chemo, (yesterday) and I am weighed so that the correct amount of the drug is prepared, according to my height and weight. When I saw the digits on the display this time, I could scarcely believe it!

So there it is. I'm really bonny right now, all puffy around the jowls, patchy and blotchy, no nails, no hair and two-stone heavier. On the positive side, I have had no sickness or nausea, major infections or hospital stays and have managed to cope with the toxicity and treatment ok. My Oncologist told me today that it is very rare for anyone to complete a course of the chemo I am on, without having to have the strength reduced, but I have managed it.

I am absolutely certain it is due to the positive energy and support I have had around me. At home, from friends - near and far, who are sending messages of support, hope and prayers - at work and from my online army, whose messages and blog comments help enormously.

Now I wait. I have a CT scan in a few weeks to establish how effective the chemo has been. I will be starting on tablets that will continue to treat and manage any cancer that remains and I will continue to fight. I will never stop fighting, these amazing children I have; my husband who stands by me and keeps everything ticking over while I am unable to help much; these four people are my world and I owe it to them to NEVER give up. And I never will.

Ups, Downs and Why No Amount of Time is Ever Enough

I haven't blogged since just before my last chemo cycle.

The truth is, I've had a pretty tough time over the past few weeks. I know there are ups and downs; good news and concerns, strength and fears.

On the day of my last chemo session, which was also my fortieth birthday, my Oncologist told me that the chemo was working. The latest CT scan had shown some nodes now clear and the soft tissue mass on my chest wall had shrunk.

This was exactly what I wanted to hear but was tempered with the reassertion that she doesn't think it will go completely and that we will be going along with her original plan to "manage" my cancer "for as long as possible." No matter how positive or determined you are, this phrase just makes sure you are face-to-face with your own mortality, immediately. My children are twelve, nine and seven; no matter how long "as long as possible" is, it will never be long enough. So, in the absence of tangible figures, my mind goes into a frenzy of calculation.

Five years: nowhere near long enough, the children will still be children. Ten years: no. Freddy will be seventeen and making some of his most important life choices, Harry will be twenty-two and Betty nineteen. Absolutely the wrong time. Fifteen years: Harry will be twenty-seven, embarking on who knows what, settling down, maybe thinking about children; Betty will be twenty-four, I remember me at that age, so much still to learn, broken hearts and mistakes of early adulthood. Freddy will be twenty-two, embarking on a career and becoming the man he has been growing into, under our watchful eyes for all these years. So no, fifteen years, not enough.

Twenty years, I'll be sixty, Tim sixty-four and the children will be thirty-two, twenty-nine and twenty-seven. There may be grandchildren, huge life events and the opportunity for Tim and I to enjoy retirement and that golden time together. Why should we miss out on that?!

So that is what my brain has been up to over the past few weeks and I didn't really want to write it down at Christmas and bring down the festive mood. It isn't that I have not had a lovely time, I really have. Giddy children, lovely festive times together with the family. It is just that the fear pops up at the exact times you don't want it to.

Today was chemo cycle five of six and the Oncologist repeated the assertion about "managing for as long as possible," she also said there could be something left that wasn't growing or that was scarring but we wouldn't know that until two or three months post-chemo. So there is hope and this is what I must remind myself of, every single day.

Chemo is getting harder, today three attempts to get a needle in to insert the cannula and one popped vein. I felt like a pin cushion and have huge bruises over the back of my hand and wrist. The pain was awful but I kept thinking of the cuddles I get from the children, the enormous amount of love I am fortunate enough to have in my life, from them and from Tim, who truly is my rock. This made it more bearable and always gets me through.

I will never give up this fight. I genuinely don't know if it is one I will or can win but I promise it is a fight that I will do my absolute utmost to. I owe it to Harry, Betty, Freddy and Tim. They deserve my best efforts in this.

So now, as I have "supper" - sixteen of my forty-seven tablets a day in the days after chemo - and settle down to sleep, I know I am lucky. I am lucky to have such incredible support from my family, friends and my amazing Twitter Army! It all keeps me going in these times of fear, worry and helps me to find that fighting strength.

So to everyone who has sent me a message of support, no matter how long or short; sent me flowers, port, cheese presents or knitted me a hat! To my amazing friends who have looked after the children while I am having treatment, so Tim can be there with me; to my family and those friends who are always there for me, whenever I need them... Thank you.

Something is Better Than Nothing.

Support is so incredibly important when fighting cancer. I have said on Twitter, quite often, that I cannot properly explain how much every single message of support helps. It really does though.

The positive energy that comes through with every kind word, even if just to say, "Hey, thinking about you!" is incredible. It is almost tangible, I can feel it holding me up, carrying me along and it helps me to stay positive and able to keep up the fight.

Negative energy brings me down enormously; I'm not saying anyone should walk on eggshells around me or not be who they are. I do believe that I need to handle negativity better though; I can't expect everyone around me to paint a smile on all of the time - especially not my children. When they play up and I tell them off, their telling me I'm the worst Mom in the world, is normal. I'm glad they don't have "Mom has cancer!" right at the forefront of their minds all the time. That would be just awful.

I am blessed with wonderful family and friends, especially my husband Tim, who has the daunting job of keeping everything together and does so remarkably.

I am fortunate to have people who understand that cancer does not define me. They have rallied fantastically. I know some people are frightened of "the C-word" - almost as if they think they could catch it if they say it. In my experience, it is worth the risk of saying the wrong thing, rather than saying nothing. Even saying the wrong thing, shows you care enough to say something! As Martin Luther King Junior said:

"In the end, we will remember not the words of our enemies, but the silence of our friends."

And that, is the truth.


- Posted using BlogPress from my iPhone

Differences

Things I do differently, now I'm a chemo patient.

1. Shopping (food)

This would involve whirling around the supermarket, pushing a trolley that became increasingly full, until it was difficult to corner. I would fill it with squashable stuff that would mean it was almost impossible to put large heavy things into it; like wine and bottles of pop, that always seem to be in the very last aisle!

Now, when I am on a "good week," (week 3 of the cycle) I wander, rather than whirl and sometimes have to have a rest when I have finished. For a week to ten-days following chemo, it's an online shop. Usually though, my very amazing husband Tim does it.

2. Shopping (Clothes)

How I love proper, girly shopping trips. I have been known to arrive at Meadowhall at opening time and mooch around; shopping/coffee/shopping/lunch/shopping/coffee, etc. until almost closing time.

Now... Much more coffee, far less mooching!

3. Work

I love to work. Always have done. I frequently work long hours, carry on at home and at weekends. A usual day begins at around 08:30 and ends any time between 18:00 and 20:00. Well, it did, and still does on good weeks.

I am very lucky to have a boss who is incredibly understanding and this helps more than I could explain. On week one, I work from home, punctuated with naps and I work when I feel up to it and as dictated by my steroid-affected sleeping patterns - if this is from 9:00 pm until 01:00 am, so be it. Week two will find me arriving at around 09:30 am, as I cannot rush around in the morning; it takes me longer to get going. I also need to be dropped off and picked up again because I struggle with the walk up the hill to the car park. If I have to take this on, I end up stopping halfway taking huge interest in the window of the bag and shoe shop, (any excuse) while I catch my breath.

4. Wash my hair.

Previously, I did this in the shower. John Frieda shampoo and conditioner, mousse, drying, gel spray, shiny spray and the lovely smell of hair products.

Now, I take my hair off and brush it. Then, I fill the kitchen sink with hot water and add fabric softener, I like Comfort Pure for this. I then swirl my hair around in the water, before lifting it out and rinsing it. It is then hung to dry in the laundry room, with the lovely smell of freshly-done washing.

There are many other little things I do differently now, such as writing EVERYTHING down, having to concentrate intently on conversation - I am so easily distracted, I can forget what I'm saying, halfway through a sentence! I know many people talk about about "chemo brain" and I can definitely confirm its... Ooh there's that lovely Colin Firth chap on my tellybox... What was I saying?


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