Caring For Our Daughter

By Yvonne Jones-Gill

Yvonne Jones-Gill is 62 years old and lives on The Isle Of Portland, Dorset (UK) with her husband of 45 years, Martin. She has three children. Before her retirement she worked as a senior officer in a day centre for the elderly.

Heathers Graduation 01db

Heather at graduation, earning honors in nursing studies and mental health.

Our daughter Heather is a 35-year-old single mother who lives 300 miles away from us. She is independent, determined, hard working, and now has breast cancer. She still has those admirable aforementioned qualities we’ve always loved about her. But now, she really needs a lot of support.

Heather had been having tests for a while after she found a lump in her breast. When she finally found out the results, it was hard for us to take in. She had breast cancer. All we could say over and over again was, “She’s 35 for goodness sake!” How does this happen?

We wanted to help our daughter and grandchildren through this ordeal. At first we considered staying with them over holidays, but we realized it might be easier to buy a static caravan and set up a temporary household nearby. We made arrangements to close our house for a few months, thinking we would return to it after Heather recovered from surgery. The plan changed when we learned that Heather would also be having chemotherapy and radiotherapy for several months because the cancer had spread to five out of 18 lymph nodes.

Luckily, my husband and I have both retired. We were mobile and could be very flexible with how we spent our time. We never imagined we’d be spending it quite in this way, but we were grateful to have the capacity to do it.

We set up our new temporary home about twenty miles away from where Heather lived. This meant we could have some space when she did not need full-time care. When we weren’t in the mobile home, we slept on the floor of the lounge at Heather’s on a fold out bed. This was challenging in itself when our grandson with ADHD came in at 6 a.m. every morning though he did try to be quiet.

Chemotherapy, A Poisoned Chalice

Since one of the most common side effects of chemotherapy is hair loss, Heather decided to shave her head before getting started. Shaving it all off gave her a sense of control in the midst of a very uncertain situation. It was quite liberating, really, and we thought she looked amazing. We were ready for the treatment to begin. Killing cancer was all right with us, but we dreaded the treatment at the same time. We knew the side effects could be debilitating.

Leaf negativespace-21Chemo treatment one. The day soon arrived for Heather to have the first of six TAC chemotherapy (Taxotere, Adriamycin and cyclophosphamide) treatments. TAC is a cancer-killing drug cocktail that is pretty aggressive. People can have allergic reactions to it, hot flashes, drug leaks outside the vein, and a host of other side effects. When Heather came home, she was bloated from the high dose of steroids she was given in addition to the chemotherapy. Apart from that, she looked the same. We celebrated, one down only 5 more to go! In eighteen weeks, this would all be over.

During the first 10 days of treatment Heather ate, as they say, like a horse. When she wasn’t eating, she slept. She needed help with everything. But slowly, after about another 10 days, she could go for a gentle walk, though she became breathless and easily tired.

Chemo treatment two. After what happened the first time around, we looked toward the second treatment date with trepidation. The effects this time were more incapacitating. Her joints and muscles ached so much that she could barely move. She told me one day that she could feel her skeleton, feel her bones. I wasn’t sure what that meant. The concoction of drugs she was taking to manage the side effects of TAC had their own side effects. Weight piled on with that large steroid-induced appetite, but her taste buds were off. She craved the strangest foods, and the spicier the better. Ginger, curry, beef broth, anything pungent.

There were times when Heather had to go to the hospital to be checked for infections. At one point, her immune system was neutropenic (an abnormally low white blood count), so chances of infection were very high. During the three-week gap between treatments, Heather’s breath was so shallow that they ordered an echocardiogram (a kind of ultrasound that measures how blood flows through the heart chambers, heart valves, and blood vessels). Heather’s heart was functioning at 15 percent below normal. This was a result of the TAC treatment.

The cardiologist prescribed medication to ease Heather’s symptoms, which did work, but she now needed to use a wheelchair when going out. It was okay. We went to parks in the country, hired a scooter, and she also used a mobility scooter in shops. She was determined that this setback was not going to stop her.

However, the next TAC treatment was deferred until Heather could get the go-ahead from the cardiologist that her heart could take the next round. This meant that the “end date” for completing treatment, that date we had all marked in our minds, was postponed. Psychologically, this was devastating. What would happen if she couldn’t complete all of the treatments, or couldn’t finish as scheduled?

Chemo treatment three. Heather got the authorization to start her next treatment. Her mobility decreased again. And her breathlessness, though improved, was still a problem. After another appointment with the cardiologist, she was prescribed drugs normally used to treat high blood pressure (beta blockers and Ramipril) with the hope that they would impede the chemotherapy’s toxicity to the heart. It was a grueling process, but we all still believed chemotherapy offered the best chance of recovery and of the cancer not returning. We moved ahead with the plan.

Chemo treatment four, deferred due to abnormal liver function. This break from treatment gave Heather’s body some of the recovery time it needed. But knowing what chemotherapy was doing to her body also made it more difficult for her to subject herself to more poison. Eventually, she had the 4th treatment. But this was her last. Her liver function was worsening due to the treatment, and she needed her liver.

lucho-6 Negative SpaceThe End of Chemo, An Emotional Time

Just as it had been during earlier treatment delays, stopping chemotherapy before the scheduled end date was psychologically challenging, and none of us knew what it meant for Heather’s prognosis. The staff members on her ward were amazing, like none I had ever experienced. They were caring, supportive, and person-centered, seeing patients as individual people. Heather found a support group online. She now writes a blog and has followers. These virtual communities have been an invaluable source of connection and empowerment for her.

Radiation therapy. Even though the chemotherapy ended, Heather was able to move on to the recommended radiotherapy. This entails a 40-minute journey for a 10-minute treatment, then back again, from Monday to Friday, for 20 sessions. The logistics alone are exhausting. Although she’s still tired, Heather is able to do more now than she was during her other treatment. Whether this will last as the radiotherapy continues we don’t know. But Heather is making the most of it, at times expecting too much of herself.

The light at the end of the treatment tunnel looks a bit brighter at the moment. Heather will soon be half way through this treatment, and that is where she sets her sights. She no longer needs to use a wheelchair and has resumed her mothering role and responsibilities, something she found extremely difficult to give up during her treatment. With all this, we provisionally discussed some dates when we might be able to return to our home.

We’re All In This Together, And We All Need Care

It has been challenging looking after our daughter while also being the carers for our grandchildren. Our role has been to support them in all ways when needed, from bathing Heather to cooking, shopping, taking children to and from school, ensuring that birthdays are celebrated and, of course, giving Heather the time, space, and complete allowance be “ill” and sleep for days if she needs to. At times I wondered if we could, realistically, stay the course. But then we’d get a break. Heather would feel well enough to stay with friends, the children would go to their Dad’s, and we’d recuperate at the caravan.

Yvonne and husband

Martin and Yvonne

In some ways, I have felt like my husband and I should be able to do it all, and I want to whip ourselves because we cannot. The sensible side of me realizes that to fulfill our role as the primary caregivers for Heather and the children we, too, need support. With this amount of mental and physical stress for months at a time, carers also need a break. Heather’s friends understood that, and stepped in. I don’t know how we would have fared if they were not there to help. I don’t know how people without a strong support network manage at all.

Open lines of communication are the most important part of creating a caring and supportive environment for each other.

One of the most valuable things in all of this is open communication between everyone; Heather, the children and us. Not being afraid to say how we are feeling, needing a cuddle, a cry, or a laugh! We still laugh together and work to overcome obstacles we never thought would exist in our lives. Cancer does change lives and relationships. For us, it is strengthening the already solid relationship we have with our daughter and grandchildren.

But it has been difficult, very difficult, to see our independent daughter using a wheelchair or not being able to do the things we take for granted. The thought of being so far away from her when we return home is daunting. We live by the sea, and I can’t imagine living away from it. But we’ve looked at properties for sale closer to Heather. Who knows? We’ll see how we feel after we’ve returned home.

We thought we knew what it would feel like to be in this situation, but we didn’t. Nothing prepares you for it, no matter how much you read or how many films you watch. Dealing with cancer is a personal thing. Not the treatment so much, but the emotional aspects of dealing with the treatment. It feels a bit like childbirth. You can know all the information, but nothing prepares you for the real thing. We are all looking forward to the euphoric feeling of the birth to come.

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