Being a Caregiver

When one member of the family gets cancer, the whole family gets it, people say. In our head and neck cancer community we have many members who have become strong advocates for their partners. Here is one such story of love and commitment. 

Taking on the role of caregiver came to me on two occasions only a few short years apart.  Suddenly and devastatingly each time, with no warning and no instruction manual.  It landed on my lap by default after the shock of a cancer diagnosis, and as such I found myself suddenly desperately treading the same murky depths as my beloved.  

I remember someone saying to me when our daughter was first diagnosed with cancer that I would have to become her advocate.  I recall wondering what that meant, or what it might entail. It became apparent very quickly as it turned out.  As we navigated our way through the complexities of the health system, hospital stays, specialist visits, medical summaries and appointment after appointment,  I soon discovered that it was up to me to be the voice when hers and later, my husband’s was lost.

As my role of caregiver unfolded, somewhere in the confusion of it all it became apparent that I needed to give some attention to the tangle of my own feelings of anxiety and fear.  Mix in some generous amounts of guilt, and there is a real medley of emotional turbulence.  How can this happen to someone I love?  Why am I well and they are not?  Is there something I should have/could have done and did not?  Why did I not see the signs earlier?  All of these things require making sense of, and sometimes that necessitates engaging in guidance to navigate a way forward.

I find it emotionally challenging sending forth my beloved to yet another procedure or investigation while I remain in the waiting room, feigning interest in a magazine that is long past current. Some days waiting and waiting with a stomach that is tightly knotted is almost too much to bear.  It’s easy to feel inadequate when he complains of feeling sick or sore, tired or fed up and I am unable to make it better.   I can be present, I can be encouraging and positive, but I cannot walk his path.  I would in a heartbeat if I were able.  

If I could offer any words of wisdom to others who find themselves in a similar situation, I guess it would be that it’s okay to ask for help.  Often our friends and family are almost hopping from foot to foot, desperate to offer assistance.    How often are we quick with our response of, “Oh we’ll be okay.”  Though it’s not easy, I have learnt to accept help and support when it comes our way.   We are blessed to have a network of good people around us who care and who want to lighten the load.   It might be a meal, or running errands, or maybe  practical help around the property.    It might just be company.  Learn to accept graciously.

Conversely, if you are the one offering the support, try and be specific, rather than a vague suggestion of help...   “Can I bring you dinner on Monday?”  Or “Can I run you to that appointment next week?”   Be practical.  Be present.  Little things mean a lot.  

As Greg’s wife, I learnt that I also needed to look after myself to be able to be the best support to him.   When you are the carer there are no sick days, or ‘I can’t cope with this anymore’ days. The commitment must be genuine and solid.   I found that time out or time away occasionally is the best therapy.  When Greg was in Auckland City Hospital, the Domain became a bit of a sanctuary.   Just to be able to have a walk in the bush and clear my head from time to time recharged me enough to carry on.  I was mindful of the need to keep myself physically and mentally well.

Thinking about the dynamics of our relationship during cancer treatment, after 30 something years I did find the sudden altering of roles challenging and in a strange kind of way it made me feel almost lonely within our relationship.  I felt unprepared to unexpectedly be the strong one and take over the organising of our combined lives and make all the decisions.  Greg has always been an old fashioned man with strong, tough shoulders so this was a bit of a role reversal that took some time to get used to and I found that on occasion I missed the man that he had been.

As the support person, it is important to be able to talk with others.  It became apparent that I needed someone that I could share my concerns and worries with, without burdening Greg. Fortunately, I already had such a person in place and being able to ‘offload’ to her on occasions helped me feel like I could cope on the bad days.  

Also I realised that I needed to research information on head and neck cancer and adenoid cystic carcinoma to be as informed as possible about Greg’s rare cancer, as well as processes and procedures we could expect to encounter. It helped that I was employed in a medical environment and had colleagues that took us in hand to offer education and guidance. We appreciated them so much.

I recall suggesting to Greg that we attend the network meeting while we were staying at Domain Lodge last year.   Being quite a private man he had some reservations about being sociable.  At the time we were just busy paddling our own canoe and trying to keep it afloat.  But I’m pleased we made the effort to attend as we found ourselves in a room full of accepting people that understood and welcomed us.    No illusions, no pretence.  The message was, ‘We’ve been on a similar journey and this is how it’s been for us’.  And when you’re feeling a bit alone or vulnerable, that support is invaluable.

Often the commitment to networking and support groups falls to the carer.  I think for me as Greg’s support person it is important to drive this association to the group because I know that he is unlikely to.  Not because he doesn’t value the friendship, advice  or support, more that the role of communicator has historically fallen to me, and perhaps that’s how it is in other relationships as well. I think that keeping the communication pathways open is worth striving for.

Walking alongside a loved one during a cancer journey is not always a choice we get to make.   The kaleidoscope of emotions can be exhausting to navigate.  I have discovered that a journey such as this brings to the fore character qualities we sometimes don’t realise we possess.  It highlights the strengths you have both as individuals and as a couple.  It gives insight into the depth and uniqueness of your relationship.  It gives a sound appreciation for the preciousness of life.

Personally,  to be the advocate, supporter, care-giver, and hand holder, first to my daughter and then my husband is my  non-negotiable act of commitment and love.   

 Kathryn Hawthorn

 

 

 

 

 

 

 

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Diana Ayling

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Comments

  • Never, ever thought I would end up in this role too. Why didn't I notice that not all was right with Kris's  body. I'm a Registered Nurse. Have often thought that I let him down, but I am human. I knew almost nothing  of Head&Neck cancers. Like others,  we both came up with our own answers as to what was happening . Even our GP couldn't diagnose the symptoms as a cancer. Nor the Dentist he went too when I became concerned about an oral cancer. Once he was diagnosed it became my job to manage everything . He trusted me to do that. He did not want to know.

    I researched online . Read as many journal articles as I could find on treatments for Oropharyngeal  cancers. Found an amazing online support group based in the USA ,- the OCF.

    I found the support, the  caring, the advice and the experience  of others invaluable.  I was able to ask about side effects and then be prepared and able to alleviate them before they arose. I could ask about treatments and felt confident discussing the merits , with our team.

    Yes, I had my down days. Reading the survival statistics  broke me. Until "Charm" of the OCF told me that they did not apply to Kris. He would either survive, or not. Simple.

    I have become a very strong advocate.  I am still advocating for Kris. The after effects of radiation,  chemo and surgeries linger and I know will be lifelong. Surveillance needs to be lifelong.

    I have had need of counselling.  After the salvage surgery , which changed both our lives in ways we could never conceive. I just needed to vent and vent. I remain grateful for that.

    To those who told me how lucky we were to be given "the gift of cancer". My response  has always been and will remain,      " if it's such an effing gift,  you have it".

    • "Gift of cancer"!!!!! Who wants a gift.

      Hopefully our site, and the work we are doing will spread awareness of head & neck cancers.  When Fred had "successful" minor surgery I thought that was it.  No-one explained more.

  • I felt so alone when Fred was told he was incurable. I tried to keep things normal for him and would cry while I was having a shower, or sneak away to the bedroom.  

    It still haunts me that maybe if I had insisted on more care that he might have lasted longer.

  • Adenoid cystic carcinoma is rare, and it is hard to find someone to connect with. The Network is just that place. We can share information.
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