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30 August 2018

A Carers Story

A partner’s perspective on lymphoma and other “stuff”

Hamish and MicheleBeing the wife of a lymphoma patient, I have been asked to write a few words on being a “carer”. This has given me cause to think about what that term means.

“Carer” seems to me such a strange word to align with a marriage of 46 years. “Partner” or “team player” seems so much more appropriate terms, even if our roles are quite different. I am therefore writing this from the perspective of a “partner”, rather than a “carer”. I make this distinction, as it has been important to my husband and I that we face his current health challenge mindfully, as a team, as we have dealt with most things so far in our married life.

When my husband (Hamish) was diagnosed with mantle cell lymphoma (MCL) late last year, we were, of course, shocked. He was a fit and healthy 70 year-old who lived an active, busy lifestyle with absolutely no time for getting sick. The reality of the seriousness of the diagnosis hit us pretty firmly and disbelief was probably our overriding emotion for the first couple of months.

We knew absolutely nothing about lymphoma so, encouraged by some friends who had been through cancer treatment themselves, “Team Us” set about educating ourselves as best we could. This is still an ongoing process. The more we read, the more questions come to light and our medical professionals at Peter Mac have generously taken the time to explain to both of us the ins and outs of my husband’s changing circumstances. Treatments have been planned then amended then replanned and are now under way.

Learning together means that we can help each other to comprehend the mass of new information about his disease and its possible treatments. It allows us to turn this process into something of a research project which will hopefully have a good outcome if we work through it to the best of our ability.

I would also like to say something about positivity and “stuff”.

All of the lymphoma help brochures and websites that we have read talk about the importance of keeping a “positive attitude”. They don’t really tell you how to do that especially if you keep on getting challenging news.

Over the years, the way in which my husband and I have always tried to deal with the less enjoyable aspects of life has been to think of them as “just stuff”.

“Stuff” can be put into a mental pigeon hole to be sorted out along with the electricity bill, home repairs and dental work.

It can be put aside to be managed at the next convenient moment or, if it is urgent, it can be tackled and worked through. It doesn’t have to have centre stage at all times in our collective consciousness.

We decided to think about my husband’s lymphoma treatment as “just stuff”. We try to make it a project to be dealt with.

That really helps us to manage the inevitable emotional stress that accompanies cancer as it gives us permission to put it all down for a while. To think about other things and to get periods of life back to some sort of normality with as much engagement in our normal life activities as we can manage.

It also helps us to feel a little empowered if we can play a part in working towards the best possible outcome for the treatment.

We try hard to organise our life as a project. We shop for and cook healthy meals, play golf, walk, swim, go to the gym, play with our grandchildren and spend time with our family and friends. Sometimes circumstances require that our regime has to be modified but we do whatever we can. This is a positive regime that we can control and which has for us both physical and emotional benefits.

Of course, we both have moments when something happens to put focus on the lymphoma but dealing with it, talking about it and thinking about it as “stuff”, not life, makes it much less of a load.

Another challenge to “staying positive” is what I call the “health system machine”.

On receiving a diagnosis of cancer, most of us are quickly sucked into the, very necessary, health system machine. This is an overwhelming, alien environment of medical specialists, appointment rooms and procedures which have the capacity to extract your identity and leave you feeling somewhat dehumanised and without any control of your life. Our way to “stay positive” in the face of this onslaught has been to try to stay in control the bits of our life that we can influence. It has really helped us to feel that we can play our co-operative part with the medical team by understanding as much as we can of the health machine process, and by making lifestyle choices to maintain my husband’s best possible health and fitness. By taking control of these choices we also reaffirm the positive role we can play as team members actively contributing to my husband’s well-being.

One final issue I would like to comment on, with which we have had to deal as part of this whole journey, is that of communication.

We have also chosen to be very open about my husband’s disease and the progress of his treatment. We share information with our friends and family and this seems to make them all a part of our “team” somehow. Their support and encouragement really helps when we are running low on energy.

My husband writes regular informative bulletins on his progress which he emails and posts on facebook to friends and family. This saves us from the emotional depletion that we can sometimes feel if we have to reiterate over and over to individual well-wishers the current update of news – especially if it’s not so good.

It is also perhaps a bit therapeutic to be able to set it all down in a considered manner on his computer. This is another way of packaging it in such a way that it can be set aside for a while.

We believe that, whilst we are not lucky that my husband developed this nasty disease, we are certainly very lucky to live in a time and place with such wonderful care options. As I write this, the wonder drugs, the medical staff and facilities at Peter Mac have combined to result in my husband’s current remission. There are still challenges ahead but we are also miraculously lucky to have the support of loving family and friends around us. These are all the real “carers”. They give us the magic gift of hope.

Michele, a cancer patient’s partner

If you are a carer or patient and would like to talk to a Lymphoma Care Nurse, please phone 1800 953 081.

 

Category: Patient Stories
Tags: Carer Family Support Michele Hamish Mantle Cell MCL,