Living with Chronic Illness

It’s been more than 3 and a half years, and I’m still living with the threat of my small cell bladder cancer returning. During this time, I have tried to live “my best life”; I have tried to keep a smile on my face. However, let me be totally honest with you: this year has been tough!

A bad year for my health

From viruses, to side effects of new medications, to ongoing problems with my whole digestive situation, to the flu, this year hasn’t been a good one, health-wise. I started the new year with vim and vigor, and all it took was a virus to completely floor me and leave me housebound.

A new medication

I tried to not worry and to accept that until the virus was gone, this was going to be my life for a while. I came through the other side and then started a new medication that made me feel so ill, so sick to the point where I became convinced something was wrong with me.

This, I feel, is typical of living with a disease that will kill you and the side effects of other chronic illnesses that are directly related to my having cancer and chemo. This worries my husband and son terribly, and deep down, it worries me.

Every day I examine my body. Has it changed? Are my legs swollen? A new bruise?!? Where did I get that?

Feeling paranoid about any health issue

You find once you have bladder cancer that you become more aware of your body. I actually want to write paranoid - yes, we become paranoid about any health issue. Or maybe I should have written we become far more self-aware of our bodies. Maybe like me, you ignored some of the symptoms you had before bladder cancer? Or just didn’t know what the symptoms were?

Every day, I wake up and am thankful I am here, but I never know what each day brings. Will I feel well today? Will I make it to the shops? Will I feel like a useful member of society?

I don’t work now, and the days, the ‘not feeling great’ days, are so long, so ‘the same’ that one day merges with another and sometimes, I don’t even know what day of the week it is.

With all this time, I worry

Perhaps today I was more tired? I was tired when I was first diagnosed. Maybe I have more bruises? I had bruises that stayed for a long time when I was diagnosed. Are my nails okay? My nails became brittle and broke easily when I was diagnosed. How much pain am I in today? I had pain on and off when I was diagnosed. Oh gosh, I am really tired... and where did that bruise come from?!

The new normal

You can’t help but be paranoid! Perhaps like me, you dismissed some symptoms as ‘just getting old?’ Or maybe you thought I know I’m tired, I just didn’t sleep well last night. Is it the same tired feeling? Your brain starts to search with your memories trying desperately to remember those few months leading up to your diagnosis. This, I’m afraid, is your new normal. You would be in a very small minority if you didn’t think this way once... or twice. It’s perfectly normal.

I think we tell ourselves that we would just know if the cancer was back, surely? Once bitten, twice shy. I often wonder if I’m a hypochondriac. Am I just imagining symptoms and pains? Is it all in my head?

How should I expect to feel?

Whenever I do pick up the phone to make an appointment and actually see or speak to someone, I get told “Well, with all your health problems, what do you expect your body to feel like?” (Honestly - that’s what one doctor actually said).

I have thought about that since then. What DO I think I should feel like? The heart failure, the erythromelalgia (as this is rare, they are still finding out related symptoms, so there is limited information out there), the pancreatic insufficiency (ongoing issues with this), arthritis, the Raynaud's (winter is here, so thermal socks are out - my feet sweat and my toes are ice), surgical menopause, fluid around my heart... oh, and let’s not forget the bladder cancer that had spread!

What am I expecting? That I will bounce out of bed like a Labrador puppy and be fit and spry?

Trying to make the best of it

I’m trying so hard to accept that this is my life now, and I’m just going to have to make the best of it, or it’s a waste of my life!

The worst is not knowing how I am going to feel from one minute to the next. Will I be able to make those plans with friends and actually feel well enough to go? You see I tend to flag (tire out) mid-afternoon. I get exhausted from trying to keep up with the housework and cook a nice dinner for my husband, who works so hard. I believe that the home is “my job” while he is working and yet, some days, I can barely muster the strength to cook a meal (thank goodness for slow cookers).

Making my life count

I think we try and fool ourselves about being okay with what we have or what we can do. I’m full of rubbish, I tell others that I am taking it easy, but I’m not. I tell others that I will rest, but I don’t. I guess I tell others what they want to hear because I don’t want a lecture about ‘resting.’ I have to make this life count, I just HAVE to! So, with all the best intentions in the world, let me do what I need to do to make myself happy.

Let me judge how I feel today. Let me decide if it’s a 'PJs and Christmas film' day or if it’s a 'let’s get out of this prison' day.