The Ever Changing Roles

I had 3 roles after Eric's diagnosis - Girlfriend, Carer and Wife.  I changed between 2 of them constantly.

When Eric was diagnosed i was a girlfriend.  Don't get me wrong, we spent nights planning a wedding, he even told me how he wanted to propose and talked about starting a family - in fact, we were trying when he got diagnosed - but we never got to do things how we planned.

The day he got diagnosed, without knowing it, our whole relationship would change.  Eric could become rude and like a different person at times - i later found out that this was due to the tumors on his brain.  I didn't know it then but our sex like would become non existent - We had a pretty healthy sex life prior to Eric getting ill, but sex was always more important to Eric than me.  Don't get me wrong, i loved it, but it wasn't the be all and end all for me.  Which is a good thing, as we only had sex 3 times in the 15 months following diagnosis.  I missed it, but more than anything i missed the intimacy, and i don't mean sex, i mean the affection we used to have - the cuddles , the kissing (the last 9 months we couldn't even snog as any arousal would cause pain), the massages - i remember breaking down in tears at a friends house when talking about sex, but it wasn't the sex i was crying about, it was the loss of normality, the loss of intimacy and affection.  The cuddles and hand holding became less due to his sweats, and the way i could show affection was by doing the 1 thing i hated - his feet!  Due to the effect immunotherapy can have on the skin, Eric's feet would become painfully covered in cracked, thick hard skin.  This meant that my job became filling, moisturizing, and massaging his feet - i got over my fear of feet pretty quickly when i could see how much Eric enjoyed it and how it made it easier for him to walk once they were done.  

I had gotten the girlfriend role down to a T over the years - i knew how to support Eric better than anyone and he opened up more than he ever had because i was the first girl he could truly trust and be himself with (i was that lucky person).  Now i had to figure out how to be a girlfriend to an amazing guy, who just so happened to have stage 4 cancer - i had raised my son as a single mother, survived an abusive relationship, but this, this scared me.  What if i couldn't do it? What if i failed Eric?

Eric never liked paperwork, keeping track of appointments or dealing with doctors - This became my role.  My phone became full of Drs telephone numbers and my calendar full of appointment dates.  I threw myself into making sure Eric had the best care, i couldn't help on the medical side, that was down to the nurses and specialists, but i could make sure Eric had everything he needed at home.  I researched every blog, every report i could find - my amazon purchases went through the rood!

• Cap - a side effect of the immunotherapy was possible hair loss - This was one of Eric's worries
• Waterproof Mattress Protector - Due to the cancer in Eric's spine, incontinence was always expected - He baffled Drs as it never happened.
• Vibrating Massage Mattress - Helped to relieve the pain in Eric's back and legs - Best purchase!
• Bowls - The obvious reason - sickness
• Blackout Curtains - So Eric could sleep peacefully during the day when needed without daylight streaming in
• Soup and Milkshake Makers - Eric's apatite was not great so soup and milkshakes helped get lots of calories into him in easy meals / drinks
• Over the bed table - Eric was a gamer so when he was awake and feeling good, he loved to go on the laptop!
• Extra Bedding - lots of it - the sweating was crazy and trying to keep on top of all the bedding was hard work
• Litter Picker - Not for Eric to go out collecting the rubbish but in case something was out of reach and i wasn't near by
• Medication Organiser - At his most, Eric was on 28 tablets a day
• Foot Spa / Pedicure set - another top purchase which Eric loved!
• Day Bed - So Eric could come down stairs during the day, yet still be able to lay down and be comfortable
• Cooling Sheets 
• Lots of pillows
• Fans - the cooling type, not the cheering ones - although, Eric would have also loved cheering fans!

There were so many things!

We got to know the Drs and nurses pretty well, Eric's specalist was AMAZING!  Eric was never very forthcoming with information when we went to Drs appointments - i, on the other hand, would take a note book with me to EVERY appointment (its one thing i would suggest anyone to do) - i would note things for the appointment, what had happened at home between appointments and any questions myself, Eric or his parents had and write the answers down so i could relay it all back.  The Drs would ask Eric how things had been and if there had been any changes etc, he would always say no, truth was there always was.  That is where i came in.  The Drs learnt to also ask me, you could see Eric roll his eyes as if to say "here we go" - i swear he thought i would tell them his toilet habits, and i probably would have if it was relevant.  

For all Eric's moaning, my notebook saved his live - twice.  Once, Eric told the Drs during a telephone appointment (Covid era) everything was fine, i disagreed.  Lumps were still growing and symptoms getting worse, he was scanned and we found out the immunotherapy wasn't working - we had 3 weeks until his scan was due, the Dr told us that had we waited, Eric might not have been here!  The 2nd time i begged Eric to let me ring the Drs but he wouldn't agree - eventually i did it anyway.  We were told to get him to the Cancer Centre, there he was diagnosed with early onset colitis.  Had we waited and it developed further, it is unlikely he would have been strong enough to recover - Don't get me wrong, people know their own body, but sometimes they are scared, sometimes we need to take the decision from them, and its not because we are bossy, its because we love them - I loved Eric so much that i didn't want to loose him, i would rather him be pissed at me for unnecessary hospital journeys, that not be here to be pissed at me!  I was still a girlfriend, who loved her boyfriend so much, but i had also became a carer and at times, while we were home, Eric's life was in my hands, i had to make the call when he couldn't / wouldn't.

I spent more time as Eric's carer than he wife.  Eric and i were married for 30 days.  We got married in his hospital room after what was supposed to be life saving surgery.  i bought him home the day after we got married, but it was 29 days of hell for Eric - and no, it wasn't because i was his wife!  I have often wished Eric had died on the operating table - yes it would mean we didn't get married, but i would sacrifice that if it meant he didn't have to spend 7 weeks in agony, every single day!  There was nothing i could do that was going to save his life in the 7 weeks - I tried, really tried, but eventually i started to face that all i could do now was to spend time with him and do what ever he asked me to do.

Most women i speak to say their greatest role is a wife a mother.  What is mine?  well that's a complicated one, but i would say carer and mother.  Don't get me wrong, i LOVED being Eric's girlfriend, and dreamed of being his wife, BUT, Eric trusted me to care for him.  Throughout the last 15 months of his life, he trusted me with everything.  When he came home from the hospital, we had carers in place to help, he refused - his words "my missus will do it", and i did.  It was hard and heartbreaking, to watch this strong, independent, beautiful man become so weak that he was unable to walk but this was still my Eric, and he looked just as handsome to me as the day i met him as that giggly 15 year old.  I take great pride in knowing that Eric trusted me with every aspect of his care - with the exception of putting the medication in his syringe driver, no way i could do that one! - it was the hardest job of my life, and i will always wonder if i could have done more and wish certain things i had done differently, and for a long time that was always in my head, but i did the best i could at the time, and Eric knew that.

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