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.