And this is how I got my life back after Cancer?

And this is how I got my life back after Cancer?

Is it over?
Can I go back to living a normal life again?
Can I remember what normal life is?
Why is there part of me that is afraid to let go of having cancer?

Will it ever come back?

These are some of the questions that I had bouncing around in my head after I was discharged from hospital about three months ago.
These questions were sparked by believing the inpatient chemotherapy treatment was all over and that soon I would be able to live life again like I did before cancer.

In this blog I will explore my own experience of being post cancer treatment and stubbornly trying to regain my old life.

As before when I have shared about my cancer I want to make clear this is not a medical blog and I won’t be going into my medical issues. Also all cancers are different. The same cancer diagnosis affects different people in unique ways. So my story can’t apply to all people with cancer.
That said it is important to state that I knew my cancer was never life threatening and this blog should be read in that context.

And this is how it ended?

It was early December 2020. The little string of Christmas lights shone on some tinsel in my hospital room. I had my collection of cards on the windowsill. Some of the staff seemed to enjoy coming into my room, as I was the only patient who had Christmas decorations up. It all seemed kind of quaint, comfy, even homely.
Underneath it all though I was counting down the days and had been since early October. The time to leave had come but I did not know the day nor the hour.

I believed the day of discharge would come but I knew from experience that I could not plan for it. This was a simple life fact I just had to accept. I was reluctantly used to it. I would say goodbye to nurses I expected not to see again, only to say, “Still here”, after they returned from their time off.
My consultant was as cautious as ever.

“Why are you still here..

You can go home”

Then early one morning the doctors looked at me different. It was as if they were thinking, “Why are you still here?” Then after five months of waiting I finally heard them say, “You can go home”.

My first reaction was to wait for them to change their mind. I started packing but only slowly. Strangely they seemed intent on kicking me out. Again I was told I was for discharge. I then made the phone call to my wife and told her. She had no problem believing it.
I said goodbye to the patient down the hall that I knew. My wife came. I signed the card she made for the staff. We gave them a canvas mounted print as a present. My tall son took the heaviest luggage.
And then I was gone.

It was all over.
After five long dramatic months I was discharged. I was no longer confined to my room, to the ward. I could feel real fresh air on my face again, as the ward only had air conditioning. The home I had made, the relationships I had worked on, were all gone.
And I told myself this was good.
In truth I didn’t know what to think or feel.
Christmas was coming. We had just had a cabin built in the back garden. The talk of the country revolved around whether to be in lockdown or not.
It was time to start living again, so I better start, I thought. I had been sitting around long enough and the world wasn’t going to slow down just for me.

And this is what it was like after it ended?

I have now had three months home from hospital. In these three months I have almost every week gone to the day hospital to get my bloods counts checked and get a dressing changed.
In these three months my family have diligently worked on getting the cabin finished in the back garden. The schools were closed due to lockdown, so I have had plenty of time with family. The proverbial from one extreme to another.

While I have not returned to work I have made it a singular purpose to do so, once I felt physically able. Indeed regaining employment became the greatest way I could express my gratitude to my family for the practical support they had been. Also I wanted to work, to earn my way. Being dependent on social welfare and an insurance policy did not sit well with me.
Physically I was regaining strength through regular physio exercises, walks and daytime naps due to the reality of ongoing fatigue.
So life has been busy, even meaningful. A great change to spending all day in my hospital room passively receiving care or passing time when I felt well.

Somehow though it all seemed just not right.
I knew my acute illness and treatment were over but why did I feel uneasy about it?
What was it in my soul that made me feel it was unfinished?
Was I missing being in hospital, the very place I fought hard to get out of?

And then I began to question if it had really ended?

I have heard about people who after a period of trauma found readjusting to normality difficult. Perhaps you have seen The Shawshank Redemption and the story of the man who was released from prison and found normality so difficult he took his own life.
Thankfully that has not been my story but I can understand it.

Since discharge three months ago I have learned leaving the cancer ward behind me was not a simple thing. While it certainly did not give me the best of memories it did give me some of the strongest memories of my life. So strong I now believe I should never push them aside no matter how uncomfortable they are.
What I hated most about being in hospital was the loss of living my own life. I lost my freedom, my autonomy. I lost the physical embrace of my family and being a real part of their lives.
On discharge I regained all these but I also left a lot behind.

I left behind my life

I left behind my life as I had lived it for the previous five months.
As an inpatient I had a committed group of people working with me. I always wanted to feel part of a team like that, working to improve people’s lives. Now I did. To make it better the life that was being improved was mine.

If you ever feel you are suffering from a low self esteem may I suggest you spend time in hospital. OK that would not work in all cases. I enjoyed having all these people caring for me. A whole world revolving around me. Not just in my hospital ward but outside too. It seemed there was a whole army of supporters cheering me on.
When you are in hospital you have to be selfish in your focus so as to concentrate on getting better. When the time in hospital is over though, you have to come to terms quickly with your world not being all about you.

Hospitalisation gives you a very short term highly tuned focus. Get better, get home, start living my life again. This was all I wanted and all anybody ever seemed to talk to me about. It is very comforting to know what you truly want out of life even though it may be so short term.
On discharge I tried to hold onto being so strongly focused but it just wasn’t possible. Too many other parts of my life and other people’s lives were now to be managed. Life was no longer so simple.

Part of being in hospital for so long involved building relationships with the people there. I got to know which staff I could have a laugh with, which staff I could expect to get a job done quickly and which staff I could off load on if need be. Just as they knew my story I got to know some of theirs.
There was the nurse who got married during lockdown. The nurse who lost her phone. The health care assistant who didn’t like night duty.
When I was discharged so quickly I felt I never got to say goodbye. At one moment I was part of something. Then suddenly it was all gone.
Chances are I will never see these people again.

My purpose was to get my life back

My purpose while in hospital was to get my life back. What I subconsciously pictured in my head was that my life pre-cancer just froze liked a paused video. This picture led me to presume that I could go back and press play when I was discharged. My instinct was I would just return to life as it was. When I was finally discharged I think I forgot that script. Certainly I was not replaying my life from five plus months previously.

When you are denied access to your normal life, you can idealise your belief of what your normal life is. As I knew discharge was approaching I thought back to some of the hard things that were happening just as I became ill. I remembered how I struggled with life at the time and was fearful of how I would be able to take on these things again. This time I would be trying to overcome these problems from a physically weaker position. That made me feel scared.
Some people discharging from long term care may not be returning to a good situation. For them pending discharge can be very stressful.

And is this my closure?

This week I was told I no longer have to attend for weekly appointments in the day hospital to get my blood checked. I also got the tube removed from my arm that was used to give me chemotherapy and blood transfusions. I will still have occasional clinic appointments. For the most part my time with the hospital is now coming to an end.

That part of my life is over, I have my freedom back. I am with my family. I had Christmas with them. I have my personal space. Still just as my school days and my college days are times I hold in my memory so will be my days and nights that I spent in the cancer ward. I will never not have had cancer again.
Each part of our life brings new memories and experiences to the table. Some good, some not. I can, you can, not continuously ignore them or try to forget them. We have to deal with and come to terms with the unpleasantness of the past. It may not taste nice but to deny it, is a denial of life itself.

Should I now become a kind of superhero who can overcome any adversity? Perhaps the opposite is more appropriate. Instead of believing I have developed super human resilience, perhaps more so I have an enhanced view of my fragility. Cancer and chemotherapy showed me my life is fragile. My fragility is my strength. When cancer or any other life threatening illness comes knocking you know life is yours to lose.
On this earth I will never live forever.

I nearly tasted death.
Cancer kills. I had cancer. It could have killed me. It didn’t because I live during a time and in a place where I could be treated. I received good care and treatment. I survived and now I am healthy.

Someday something will cause my death. One in one of us die. Perhaps it will be cancer that will get me a second or third time around. Till then in God’s grace I will live.

Epilouge

In the meantime what do I do with the memories of emotional and physical pain, loss and joy the last eight months or so gave me?
When these memories come to mind I will hold them, remember them and ask of them, “What have I to learn from you today. What can you do for me now to make this moment a better moment for my life”
If that is my, “Cancer Survivor Man”, super power well then may it bless me as I hope this blog has blessed you.

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James, Very well said. Cancer is a journey we each take differently. A journey where we each find ourselves and what courage we have. It’s a journey I’m glad God blessed me with. Just think, had it not been for our diagnoses, we never would have met. There are so many things we learn along the way to share. God bless you. Kathy Kohner, Cancer Companions.

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