The Downside of Beating Cancer

This is a long article, but it is somewhat of how I am feeling lately.  Written by Dr. Frances Goodhart and Lucy Atkins.


You expect to be elated, but, cancer survivors are often left feeling depressed, exhausted and even angry. 
More people than ever are surviving cancer.
But many struggle with life after the disease.

 

DEPRESSION

Low mood — or even depression — is one of the most common side-effects of cancer survival.
Sometimes this feeling kicks in almost as soon as treatment ends, but it might also hit you months or even years later. There are many reasons why your mood might plummet after treatment, but the basic summary is simple: you have been through a very tough experience, physically and emotionally, and it takes time to recover. You are not mentally ill, you are not ungrateful or a wimp, and you do not automatically require professional help. You’re just feeling sad. Your own expectations about life after cancer also play a part. Often people who are going through cancer treatment make deals with themselves about what they’ll do if and when they get the all-clear. ‘I told myself, and my wife, that if I got through this I would put the rest of my life to good use,’ says Keith, 45, a leukaemia survivor.  ‘We talked about how I’d leave my boring job in accounts. We’d set up a residential home together to provide a loving and homely atmosphere for elderly people in their twilight years.’ But the pressure ‘to make the most of life’ can — and often does — backfire. It can feel overwhelming. And this can leave you very confused, lost and low. Then there is the huge hit your body has taken. You may be scarred and shaken up. You may have suffered enormously. You may feel overwhelmed by side-effects, such as fatigue, mobility difficulties, pain, discomfort or lymphoedema (swelling). On top of this, your general strength and fitness will probably have diminished. The Victorians had a concept of ‘convalescence’. They recognised that after a major illness it takes someone time to recover and regain their strength. But over the years — maybe because of the amazing advances in medical treatments — we’ve somehow lost this valuable idea.  The expectation these days is that you should be raring to go the moment you are discharged (or as soon as the time between follow-up appointments is lengthened).

 ANGER

Mixed emotions: Rather than being relieved, many cancer survivors feel angry about why they had to suffer and the treatment they had to endure. ‘If one more person tells me I am so lucky to have got through my cancer, I won’t be responsible for my actions,’ says Gill, 46, a breast cancer survivor. ‘Yes I’ve survived, and I’m immensely relieved about that, but to suggest I’m lucky to have had my breast removed, gone through chemo, lost my hair and had an early menopause shows how ignorant people can still be about cancer.’

Like Gill, you’ve faced your cancer and, after being given the all-clear, are where you have longed to be. So why are you still angry?
One reason is that you still feel threatened. Though cancer is no longer an immediate danger, it might still feel close by. You may be experiencing feelings of helplessness. During treatment, you and your medical team are busy doing something about the cancer.
But when you reach the end of your active treatment phase, even though it’s obviously what you have been longing for, you can end up feeling lost, even helpless. When active treatment ends, people often begin to look backwards, trying to work out what caused their cancer. It’s common to go over and over this. If you smoked, drank too much alcohol or did any of the numerous carcinogenic things we all do every day, then you might feel regret and guilt. You may also feel angry at yourself.  Other people’s expectations can be frustrating. Whether they assume you’ll instantly spring back into your normal life or insist on treating you like a fragile flower, it’s common to feel misunderstood.  Anger is not always bad.

FATIGUE

 Common side effect: Battling the disease physically and emotionally can leave many people exhausted

Fatigue isn’t like any tiredness you’ve had in the past. It affects you both physically and mentally. It can be overwhelming or niggling.
Or it can veer between the two. It is also the most common — not to mention the most frequently ignored — side-effect of cancer and its treatment. Fatigue is a physical and mental response to the stresses and treatments that cancer brings.
It is also a known side-effect of certain medications used in chemotherapy (it can take a surprisingly long time to get over these.) Other causes include ongoing medication and changes in your immune system or hormone levels.  
Your body is also likely to be out of condition — this can make you feel drained and lacking in energy — as, too, can disrupted sleep, which is very common among cancer survivors. Your body has taken a huge hit and needs to be built back up.

 Everyday is different, and every day I experience varying degrees of side effects.  I have and do related to all of the above.  And probably a few more.

 

 

Appointments

I can't believe it has been a month since I updated this blog.

Last week was a lot of doctors appointments - 3 of them.

First on Wednesday was an appointment with my oncologist. 
He thinks I am doing well.  My last blood test in December came back
all within the normal range, so he hasn't ordered any more. 
I started taking Tamoxifen, but haven't been on it long enough to see what side effects I will have. 

During one of the first appointments he mentioned that within the next five years
I would need to have a Oophorectomy, removal of the ovaries. 
Well, he changed his mind.
 Now he wants me to have a complete hysterectomy, removal of the ovaries and uterus.
And he wants me to have it done within this year. 
I am still trying to come to terms with that one. 
I am thinking maybe around October.

I also  talked to him about what state I am. 
He said I am NED (no evidence of disease) and in remission. 
When I hit the five year mark cancer free, I will be "cured". 
And I can technically say I have been cancer free since the date of
my second surgery - December 4.  Almost 5 months now!

I don't go back to him for 3 months.


Next on Thursday was my radiation oncologist. 
He said my skin was healing up nice. 
I still need to do a few things to take care of it but overall it is doing good.  
My skin is discolored from the radiation, kind of looks like a tan now instead of a burn. 
He doesn't know if it will ever go back to its normal color. 

I don't have to go back to him for 5 months.

I will also see my plastic surgeon in 5 months.
I will talk to him about the best time to start reconstruction.

Then on Friday I saw my physical therapist.
My arm had some swelling but that is typical from radiation. 
She is working to try to get it back down to its original size. 
I am getting better range back in my shoulder. 
I like going to see her, she helps, but I usually leave in pain too. 
My insurance only covers so many visits so I see her about every 2-3 weeks.

I go for my next Muga (heart scan) in a few weeks.

I am still getting the Herceptin treatments every three weeks -
and have finally been able to schedule my last one for the end of June!!

I will see my surgeon next month in May.
We will talk about doing the left mastectomy and removing my port.

I have some lasting side effects like: my nails are still very brittle. 
I have nose bleeds almost everyday.  My eyes get fuzzy a lot.
The headaches vary in intensity each day as do the stomach and abdominal pains.
I am trying to learn these are just part of my new normal and to find a way to live with them.

My hair is also starting to grow back.  It is about as long as Ryan's, he thinks it is time for a trim.
I don't think I want to cut any of it for the next 5 years. 
I still wear my scarfs and caps.  While I am grateful it is coming back,
it is still really hard for me to see it so short. 
It is to much of a visual reminder that I had cancer, kinda like my scars. 

I am slowly getting back into a routine and am excited for the next steps -
they will all bring me closer to being done with this whole stupid cancer thing!