Going home…

I spent a week in hospital being taken care of by a great, attentive, caring and cheerful bunch of nurses and doctors. A total example of the wonderful people who are at the frontline of our fantastic NHS.. I had the odd bad day. My temperature was a roller coaster at times and I was on liquids only for five days. This made things a bit more than frustrating. Dee visited me every day and kept me up to date with home life and gossip. The liquid diet made the bananas and grapes only pay a flying visit. When the cancer was removed it took with it a section of my colon and my rectum. I now had a stoma. Just like Tesco, I have a bag for life! But at least I have a life.

Now some of you may wonder why the title? Well when you have a bag for life you have no control over it. There ain’t no way you can “clench” when you have a stoma. It JUST HAPPENS! So at the most inappropriate moments I can almost guarantee that it will spring to life. Strange bodily noises will emit and a bulge will slowly appear under my shirt. No control at all!

It was whilst I was in hospital that Steve Woods contacted us about doing a photo-documentary on my journey through the healing process to full fitness.

Why should I? Well after the face book page that generated over two hundred comments and such support and kindness maybe it can help somebody. Maybe it will stop one person falling into a pit of pity and show them there is another way. I had had some real depressive moments between diagnosis and the operation but Dee would not let me wallow for long. She kept me active and helped to keep my mind on other things. Now I have a strange sense of humour that tends to find something funny in all things. I had spent all year dieting but only lost weight because of the operation ! Two stone! Maybe they lied about the size of the tumour ( see what I mean).

On March 26th I was deemed fit enough to go home. Steve came and and we chatted about the treatment and how I felt and where I had been physically and mentally the previous week. That’s when it struck me. I could remember instances, conversations and visits but I had difficulty remembering the order they were in. I seemed to be asleep all the time. I could also remember the most vivid and ridiculous dreams! I had been taking Tramadol! A strong opiate painkiller. I had basically begen tripping all week.

Dee arrived and, as you can see from Steves photos we were soon back to our old selves with banter and laughter. We had missed the togetherness that we share. We always say it takes the other to make us whole and my spirits were certainly raised knowing that I would be home with her soon. I look old and knackered in these first photos for two good reasons: I felt old and was knackered!

The walk to the car felt like an escape. Get me home, get me to my chair, to see my Esther, to eat good food and see my faithful hound, Yorick.

Esther had the week arranged to work from home. I could see the worry on her face as I got in. You should never have to hurt your child and worry them like this. Titch, our youngest was there and she too showed concern and worry. Dee was just delighted to have me home and proceeded to fuss over me like never before.

I was sore and stiff, my bag was still an irritant and my head was fuzzy from the drugs, but the warmth and love of my “ladies” was starting to weave its magic. Yorick was nudging me for a cuddle and the kettle was on. All I had to do was get fit again.

Prior to the operation I had worn a fitness watch and had been doing twelve thousand steps a day to get fit. Now I could hardly get out of the front door.

Things soon got back to normal with friends popping round, short dog walks that slowly grew into long walks and from being waited on to starting to cook and make the tea as always. There were still visits to clinics. Forty staples had to be removed from the fifteen inch scar down my belly and the nurse needed to check that the stoma was ok. I knew it was certainly working properly!

Four weeks later and two stone lighter I feel great. I’m getting fitter each day and I can feel the strength returning. The heavy diy is still on hold and will be for a while longer.

Last week came a wee set back. Of to see the surgeon for a follow up that was not as good as we had hoped for. He explained that when the tumour was taken out so was a section of the colon, its blood supply and the lymph nodes attached. The colon section and blood supply were free of cancer cells but out of the twenty four lymph nodes just one showed some cancer cells. Just one. So the treatment was not at an end. I was being referred to an oncologist to discuss the need for chemotherapy. It was needed to “mop up” any cancer cells that had escaped from the tumour. What was needed now was for me to get as fit as possible, once again, prior to the treatment. Longer dog walks and a close eye on my diet.

I am still awaiting my next appointment and being in the hands of others is frustrating and there are times when fear and depression sneak up on me. What if, Becomes a nag. Memories of my mum and loosing her to cancer cloud the thinking. Feelings of injustice. Why me? Then Dee is there. Just talking calmly and logically bringing me back to reality, away from fear and trepidation. She makes me smile and soon has me realising just how lucky I am to have a home, family and marriage that keep me firmly rooted. Life is good and will be long…

 

Where is Dee? I’m ready to go.

I may as well Steve my life story…

 
 

I’ll tell Steve more of my life story…

 

Freedom… Lies that way.

 

She’s here at last.

 

We’re fairly please to see each other.

 

Actually smiling….

 

Nearly ready…

I think this image to some extent, represents how the experience of cancer has felt for me.  Phil is lit in this image and I am in shadow.  The two of us; alone and together. Working toward coping and managing our hopes and feelings, our shock and fear. Finding our determination and belief.  There are other participants of course.  Our daughter, family and friends.  But for me, I battened down the hatches and it was we two.  I think at times… unfairly.

 

Me bossy?….

 

The box.  It keeps him alive. Without the contents; he would die.  The box.  I hate it. I love it.  The box. Like death and taxes, it’s always with us…

 

This is interesting. To some extent, it reflects how I feel… narrowed.  Pinned in to a space that is confined. Small, with narrowness applied to life and dominated by the medical matters. We’re still here, but for a time…. Diminished as free individuals.

 

Getting up he’s a bit doddery…

 

You’d think he’d be able to dress himself by now….

 

But no…. I’m still doing it.

 

All done.

 

Are the grapes worth taking?

 

He’s making a dash for it…

 

He’s off….

 

 

It felt so good to have him back.  That’s my place in the world.  We’ve always said it. Tucked right in that space in his arms.  I fit exactly.   He was made to measure… just for me.  Bliss…

 

Going home.

Cheerful Sparrow…..

      This ward, and it’s staff; saved my husband’s life.  With thanks to Sister Sue [she looked me in the eye] nursing aid Kaleigh [she made me tea], super sister Tony [she came in an actually made conversation and talked to us as people,  and of course Mr Harilingam.

Mr Harilingham?  A mensch.  A Yiddish word for a man, a man of honour.  Mr Harilingam, is a man of honour.  Secondly he is a doctor.   But first… He is a mensch. After six hours of surgery, this man took the time to make a phone call to tell me my husband was okay.  In around a dozen times in hospital, never has a surgeon, a consultant; called me personally.  When he spoke to us, he looked us in the eye.  We called him by his first name, Mohan.  He touched us comfortingly.  He drew us diagrams. He moved appointments in the system personally.  He walked to other departments to make sure Phil  had scans when they were needed and not always in the way the system told him to.  He is from Southern India.  A place I shall always now think of with respect and affection.

Mr Mohan Harilingham.  A Mensch.

[Dee Cartwright]

Again….

I’ve been in hospital too many times to enjoy the time spent doing nothing. The drugs this time were stronger than I was used to and caused my character to change.  Confusion frustration and irritability were my main emotions. Not able to concentrate to read or watch television. Dee having to put up with my short temper and irritable tantrums that I could not see at the time. Feeling lonely even though she visits me every day. Feeling trapped and unsure as to the future,

Just get me out.

1 – February 8th 2017

photograph by Steve Wood

 

Life tends to send us all a few curve balls from time to time, and I cannot deny that I have had my share. But the last few years have seen a couple of curve balls I could have done without.

 

I love being active, even if it’s only propping up a bar after a round of ruddy bad golf! To find walking painful and, at times, almost impossible was about as low as I thought I  could get without losing someone close. I got over it because like all us men I had a wife kicking me up the rear to get well after two replacement hips. She did a great  job and as soon as the operations were over I was working on getting back to fitness. In thirteen weeks I was walking in the Lake District and feeling bloody marvellous!

 

Then before Christmas I started to feel unwell, tired and listless. There was blood were it should not be. The Doctor sent me for an internal investigation. (OK, so it was a camera up me back passage.)  On February 8th 2017 I lay on my side facing a large TV. I saw the camera approach go in and bump up against a lump. It looked like a giant chickpea.

 

A short while later I was in recovery. In my case it was sitting down stuffing a huge egg mayonnaise roll into my mouth. I had not eaten for 24 hours. Dee was with me as we were called into a side room. Now I knew. I had hoped it was just a bit of colitis but the side room with a consultant and nurse told me I was not lucky, …this time.

My mind took control. As the consultant told us the bad news and Dee cried and hugged me. I still kept focus – where’s that egg roll? I have cancer. I can’t change that. I’ll leave that to the doctors. I need to be fit for whatever is next.  They say it’s caught early and in the “right place”. There is a good, very good chance it will be OK. Fine, let’s get on with it. Dee asked all the right questions and made sure we new the way forward. Shock had set in.

 

There was only one real fear. I would have to tell my daughter, Esther. How do you tell your child you have cancer? It’s not a dads place to break a child’s heart. She may be 30 but she’s still my little’un. All you can do, I found out, is  put your arm around her and tell her like it is.

There were tears and even a wee scream but the words of positivity from the doctor helped. We were soon discussing the families way forward. How would we cope, how would we keep Esther informed, how to prepare for the operation.

 

There were more tests and meetings until Dr Harilingam told it like it was. He was determined that I knew what would happen and the options open to me. He drew diagrams and explained in great detail the pros and cons. On March 20th 2017 I went under his knife. He said it would take three to four hours. It took six. A previous life saving operation had left my insides in a bit of a mess, apparently! He had to “re-do the jigsaw” before he could sort me out. Dee was waiting with Esther the whole time and with my four hours in recovery they had a very tense fourteen hour day before they saw me settled on the ward.. I later found out that Dr Harilingam had called Dee to reassure her that all had gone well.just after the operation. After six hours in surgery he took the time to reassure her that all was well.  It was over…

more to follow…