Cancer: coping with a loved one's illness and subsequent death

They say that money brings out the worst in people. It's probably also true that other peoples' illnesses do the opposite and tend to bring out the best in human nature. At least this was my experience when my wife was diagnosed, underwent treatment, and (eighteen months later) subsequently died of colon cancer.

The cancer was diagnosed following a bowel cancer screening test, mailed out as part of the National Bowel Cancer Screening Program, though some earlier signs had been ignored. My wife was notified of a positive result and subsequently had a colonoscopy, which confirmed the bad news. Surgery was urgently scheduled.

Fortunately we had private health cover, and following a procedure lasting many hours, the cancerous areas of her colon were removed. The surgeon was confident that he had removed all the cancer, and also undertook tests to evaluate the risk that the cancer had spread. Unfortunately, the tests indicated a need for follow up chemotherapy.

Two of the worst consequences of her illness were the need for a colostomy bag, and the effects of the chemotherapy. For me, much of my life was on hold during the illness because I was not prepared to leave her on her own, in case anything happened. Equally, it was best for her to be accompanied to appointments and treatments.

My wife needed a colostomy bag temporarily (about nine months), while her colon was healing from the surgery. This involved unpleasant routines, and certain foods needed to be avoided. Unpleasant matters included that the surgical opening from the abdomen could become tender. Also regular changing/emptying of the bag was required, and this process (especially attachment of the colostomy appliance) was somewhat intrusive and uncomfortable for the patient, who generally performed these tasks herself.

The chemotherapy was a cyclical event every two weeks. Typically the worst effects seemed to come a few days after administration, with the patient returning close to normal late in the second week, only for the cycle to repeat. The main side-effect seemed to be a general loss of energy. My wife also experienced some persistent loss of feeling in her hands and feet. She was stoic in the face of all her treatments and discomforts, and was a very good patient, who rarely complained. A positive effect of chemo was that it caused the symptoms of her arthritis to temporarily disappear.

Following the course of chemotherapy, there was hope of remission. Further scans some weeks later unfortunately showed that, while the original cancer was gone, it had spread to her liver and one lung. It was decided to treat these cancers with radiotherapy, but this turned out to be ineffective against such an aggressive cancer.

More chemotherapy was prescribed. Before undertaking this, my wife's colon was reconnected so she could do away with the colostomy bag. This was not a "return to normal", as it apparently takes a long time in such circumstances for body motions to return to anything resembling normality. We were, however, (after some recovery from this) able to enjoy a two-week holiday in far north Queensland before the chemo treatment began again. Toileting. however, needed to be carefully planned for.

After a couple of renewed chemo treatments with seemingly stronger drugs and worse side-effects, it was decided that my wife's body could not take any more, and chemo was stopped.

We could not fault the medical professionals providing treatment. All were diligent, competent, compassionate, and did their best. The specialists were informative but interestingly did not provide a survival prognosis unless specifically asked. Initially the cancer was deemed to be Stage One with a fifty per cent chance of survival beyond five years. After the cancer had spread, it was regarded as Stage Three. Without further chemo, survival of only three to six months was likely, we were told. With further chemo, there was a 25 per cent chance of survival beyond two years.

In the end my wife succumbed to her cancer about three months after the chemo was stopped.

Despite the warnings (and explicit advice from our GP about how to speedily obtain a death certificate) my wife only partly planned for the inevitable. We had updated our wills early in her illness but details like telling family members about phone, internet, and other passwords had been overlooked.

The end of life came on quite quickly. My wife became weaker and less able to walk. One day she suffered a minor fall. I helped her to bed, which was the last time she was on her feet. It soon became clear that she only had days to live because she quickly became unable to eat, drink, or talk.

The medical advice was that we should seek a bed for her in a hospice for the terminally ill. The only problem was that the main one in our city was full. Another problem was that (due to Covid) only two visitors a day were allowed. I was told that the trick in getting a person admitted was to call an ambulance, which would take the patient to public hospital emergency. When the hospital decided that nothing could be done, the patient would then have to be admitted to the hospice.

I quickly decided not to put my wife through this ordeal, and that it would be better if she died at home with friends and family around. An important consideration was that she was Asian, and in her culture it is taboo to put elders into a home. She herself had looked after her own elderly mother. Family, close relatives, and friends all rallied to assist so that she was never alone during her last days, and those with medical training attended to needs like regular turning and managing continence. We were promised visits by a palliative care nurse but this never eventuated.

The funeral arrangements went well. The funeral directors were professional and efficient, as were the people at my wife's (Anglican) church. While I myself am not religious, I did observe that members of her church went "above and beyond" to help during both her illness and in providing a suitable service. The church did not charge for the funeral because she was a member of its congregation.

I took out probate myself, even though we had used a solicitor to draw up our wills. Tidying up her affairs turned out to be a not inconsiderable task, mainly because household things and financial affairs took a lot of sorting out.

First of all, her e mail and phone messages were inaccessible because we did not know the passwords. Access to communications to and from the deceased is important for identifying bills, assets, and ongoing commitments. We managed to eventually guess the e mail password but never figured out that for her mobile phone. Samsung refused to unlock the phone, which is now effectively unusable.

A second major issue was dealing with clothes, personal effects and a lifetime's collection of household and personal items, much of which was now unwanted. A lot were given to relatives and to charities or recycling facilities, but sorting out and disposal took a lot of time. We had also been in the process of getting a new kitchen installed, but this was only partly completed at the time of her death.

Despite their formidable reputation, the banks were very good to deal with. Once probate had been granted, I as executor was fairly quickly able to access accounts, and all financial details were provided.

Superannuation funds were amongst the worst to deal with. One private fund took ages to respond to correspondence and the funds took about five months in total to be paid out. The spouse component of her public sector superannuation pension also took about seven months to start being paid. Her mobile phone company was also very slow in responding, and in cancelling unwanted plans.

The ATO was an experience to deal with. It seemingly does not like to respond to correspondence and tries to push all contact through tax agents. My wife had been behind in her tax returns and in the end owed money. While there was no fine, the interest penalty (waived after appeal) applied an interest rate that would have embarrassed even Shylock. The ATO was also discovered to be holding a modest amount of "lost" superannuation. To date this still has not been paid out.

Overall, in my wife's case, the treatment was probably worse than the disease itself, though the treatment probably extended her life. The problem is that you can't fully tell in advance how effective a treatment is going to be.

There are guides to indicate what people should do before they die. While useful, especially in preparing for financial contingencies, practical solutions to allow for this digital age are generally left out. Similarly, there are useful guides as to what to do after a loved one dies,

So what are the lessons learnt from this experience?

First of all, the death of a close family member reminds us of our own mortality. When we lose our parents it is a reminder that our generation has become next in line. The death of a spouse is an even stronger signal. Equally, while money can be important, at the end of life close relationships and friendships clearly matter more.

While there is probably no substitute for prior experience in planning for death and its aftermath, there are things we can all do. Making a will is an obvious priority. A very useful addition is to attach a comprehensive set of key information for the incoming executor and surviving family members. This might include a comprehensive list of assets, liabilities, and regular payments. Details of bankers (and all accounts), key contacts (eg superannuation funds, property agents, stockbroker) and other important matters should be listed. Anything considered confidential could be contained in a sealed envelope to be confidential until after death.

Legal advice is desirable when making a will, and can reduce the burden in finalising an estate. Lawyers commonly discourage DIY probate, though this can save the estate a lot in legal fees. My view is that doing things yourself is ok provided there are no significant legal complications, and the executor is competent in administrative matters.