How to help a cancer patient: a guide

How to help a cancer patient: a guide

 

When one is diagnosed with cancer and that knowledge becomes public, one is likely to be bombarded with expressions of concern and offers to help.  In my experience, there are three broad groups that tend to form.  Group one is composed of people who express some concern initially, but then disappear from your radar screen, as if cancer where contagious.   Group two is composed of a loose grouping of distant relatives, colleagues, acquaintances, and friends.  Group three are your intimate friends and close relatives.  The people in these two last groups will offer to help.  In my experience, the people in the third group will be (quite rightly) the people who will be most emphatic in their support to help.  However, they are the ones who are most likely to disappoint you, when you actually seek their help.  In my experience, it is the people in group two, in some cases almost complete strangers, who offer the most effective assistance.  This brief guide is written to people in group three, the close relatives and intimate friends of cancer victims.

 

If you offer to help, help.  Otherwise step out the way

Most people who offer to help have no idea what that offer actually entails.  Cancer patients are also unlikely to know what type of help they will need at different stages of their treatment.  Whenever a vulnerable cancer patient hears someone offer to help, along the lines of “if you need ANYTHING, please let me know and I will be there for you”, then that cancer patient is likely to interpret that offer to be a genuine one, particularly as it comes from a close relative or intimate friend.  Sadly, one is constantly disappointed by people who are so vociferous in their offers to help, yet so lacking when it comes time to deliver on that promise.

The evening before one of my surgeries a “close friend” came to my apartment to offer her help. This “friend” had worked at the hospital where I was to receive the treatment the next day and she offered to assist in making sure that I was well taken care of.  She also offered to make me a special Chinese soup to help my recovery post-surgery.  The morning after a gruelling nine-hour operation, I received a Facebook Messenger message from this “friend”.  She said that since I had so many well-wishers on Facebook that I obviously did not need her help anymore.  She topped this message with a smiley face.  I never heard from her again.  About a month later, another “close friend” who had purportedly flown in from New York to “help with anything”, left me stranded in the hospital as I was about to be discharged.  As hospitals will not discharge you until someone comes to collect you, this “friend’s” inexplicable decision to leave me high and dry was one of the worst experiences of my treatment.  There must be a special place in hell for people who do this to a friend.

Doctor and hospital visits

Cancer patients face an innumerable amount of time in the hospital, whether it may be for medical appointments, visits with surgeons or oncologists, to receive chemotherapy and other treatments.  It is likely that at some point you will be ask to go with them to one of these admittedly tedious procedures.  Believe me, it is not fun.  However, whenever a cancer patient asks you to go with them, they are signalling to you that they are afraid and that they want you (over any other person in the world) to be there for them.  These are not trivial requests, they literally involve life and death.  They are far more important than other requests, like attending a wedding or a work meeting, that we give such undeserved attention.  If a cancer patient asks you to go with them to, say, an appointment with an oncologist or a surgeon, you should be immensely flattered.  You should be there early and once there you should be the very portrait of cheerfulness and support.  As a close friend or relative, who has offered help, you have no right to ignore these requests.  You have no right to come up with lame excuses, such as “I am too tired”, “I am too busy”, “I don’t like hospitals”.  Believe me, your petty concerns are just that.  Your loved one needs you and is asking you for help.  Help them or get out of the way.

When to visit a patient in a hospital

It is quite likely that part of a cancer patient’s treatment will require a lengthy hospital stay.  These hospital stays can last as little as a few days and as long as a month.  There is no other way to it, but hospital stays suck.  At night, hospital wards are incredibly noisy, with people snoring loudly, people screaming in pain, nurses talking out loud, alarms going off.  A patient will also be in considerable pain and discomfort at night.   In comparison, hospital wards are most tranquil during the afternoon.  It is the time that patients are more likely to have to rest.  Unfortunately, visiting hours will overlap during this period of relative tranquillity.

In the context of living in the environment of a zoo, having visitors can be quite an intense experience.  The pain, the drugs, the bloating, the constipation, the sleeplessness are going to wreak havoc on the sturdiest of patients.  In order to minimise the stress caused by having visitors, it is important to follow two simple rules:

Rule 1.  Do not show up unannounced.  In the context of an enclosed protected space that the hospital provides, unannounced visits can be really distressing.  The day after one of my surgeries, I woke up in the ICU.  I heard some banging on the door and saw a friend of mine frantically banging on the door and waving for me to open the door.  At that point I realised that I had all kinds of drips and tubes coming in and out of my body.  On top of that I was both dazed from the morphine and in intense pain.  When I saw my friend approach my bed I thought that I was in a horror movie, I thought that she was going to stab me.   I cannot adequately describe the panic that this event had on me.  I know that my friend meant me no harm, but that was one of the most horrifying moments of my life.  I still tremble when I think about it.

Rule 2.  Make sure that it is OK for you to visit.  I have found that visitors are most desirable the hour before dinner time, typically around 4:30 to 5:30 p.m. during the weekdays.  Weekends tend to be more relaxed, so that’s a good time to visit.  It is highly advised to inform the patient about your proposed visit at least a few days in advance.  A text message or Whatsapp message saying something along the lines of: “I wanted to visit you on Thursday at 4:30 p.m.  Would that be convenient for you? “ should be enough.  Give the patient ample time to respond.  If they are in agreement, then great. If they don’t, don’t pester them.  They have not forgotten how to use a phone.  If the patient has a gatekeeper (say a spouse), then carry your communications with them and respect their wishes.

What to bring to a hospital visit

 

We live in an environment where we believe that material things are going to bring comfort.  Many believe that chocolate or candy are essential to provide comfort and they may well do.  The problem is that the accumulation of these products poses a problem.  After two extended hospital visits, I have enough chocolate bars to open a little store.  So before you visit your patient, ask them what they would want you to bring them and only bring them that.  If the patient asks you to bring them a .75 cl bottle of Evian, a copy of the weekend Financial Times, a box of tissues, or a washcloth, then bring them EXACTLY what they have requested.  No more, no less.

I would strongly advise you not to bring anything perishable or that requires refrigeration.  This includes fruits and flowers.  Generally hospital wards begin to stink of rotting fruit (which attracts fruit flies and other unwanted parasites) and dying flowers.  I guess that fake flowers are OK, if your patient likes flowers. Don’t bring alcohol. If your patient asks you to bring some cooked food, then bring EXACTLY what they ask you to bring.  Most hospital food is either bland or repulsive, so you would be doing them a big favour by bringing them what they want.  For instance, I recall asking a friend who lived near my hospital to bake me a potato.  Two hours later she showed up with this baked potato.  It may not have seemed like much to her, but at that moment that baked potato tasted like the most delicious thing that I had ever eaten.  I will be eternally grateful to this friend for doing exactly what I had asked her to do and to deliver it.

If you are the type of person who insists in bringing something —even though your patient has asked you not to bring anything— then I would suggest that you bring a couple of magazines.  You ought to keep in mind that your patient is under a lot of stress and whose faculties are impeded by pain and drugs.  Since your patient will likely have some hobbies (e.g., photography, gardening, fashion, football), then go out and buy some expensive niche hobby magazines and that’s it.  If your patient has no hobbies, then buy a couple of those types of magazines that everyone knows about but no one ever buys (e.g., Hello, National Geographic).  Don’t bring porn (even if it is a hobby of theirs…). 

Don’t bring babies, children, or surly teenagers to a hospital ward.  Babies cry and their cries are incredibly disturbing to people who are in pain.  Children, no matter how adorable they may be to you, are noisy and easily bored.  Finally, surly teenagers are eerily quiet, almost catatonic.  There is nothing more depressing to a patient than seeing a surly teenager fuming and clearly paying more attention to their phone than they are to you.  If you insist in bringing babies, children or surly teenagers to a hospital ward, then have them stay for a matter of minutes and get them out of there.

What to say in a hospital visit

It may seem strange to monitor what you are going to say during a hospital visit, but you have got to keep in mind that a hospital is a highly regimented environment with a lot of unwritten rules.  One of the unwritten rules is that visitors are a nuisance (to others).  During your visits, which should last no more than 15 minutes (unless otherwise requested), you should speak in hushed tones.  There is nothing more irritating than having to listen to some chatterbox go on and on talking for hours on end, particularly if they are not visiting you.

Unless you are a world-renowned oncologist or radiologist, do not offer any medical advice.  The world of cancer is surrounded by all sorts of quacks, claiming miracle cures.  Most cancer patients get plenty of information available to them already, don’t contribute to this information overload.  Don’t fill your patient with false hope either.  Instead, be encouraging in whatever treatment they are receiving.  Tell your loved one how proud you are of them for undergoing this difficult treatment.

Given the fact that most hospital patients are not quite themselves, it may be difficult to carry out a coherent conversation with them. Once you are past the perfunctory “how are you doing”, you will realise that most patients don’t want to talk about their ailments.  If they do, then indulge them, otherwise keep your conversation light and positive.  Make plans for some event that you will do together, once the hospital stay is finished.  Give the patient some work or family-related gossip.  Be creative.  For instance, upon hearing that I have had difficulty sleeping, a friend recorded some Polish lullabies from her piano. I can’t think of anything more soothing and loving than these lullabies.  I still listen to them when I have difficulties sleeping.  Another friend videotaped the antics of a puppy that she had just bought.  These silly video clips brought me intense joy and made me forget about the hospital.

Whatever you do, do NOT judge your loved one.  One day, as I was twisting in pain, my “best friend” showed up and proceeded to tell me how I was responsible for having cancer.  He said: “If you hadn’t been partying so much, you wouldn’t have cancer.”  Since I was taken aback at his words, he repeated them again, waiting for me to agree with him.  I threw him out, rather politely as I was in pain.  I will never forgive this “best friend” for his hateful words.   Just as you would never, ever, blame a rape victim for what has happened to them, you should never, ever, blame a cancer victim for their illness.  No one deserves cancer.

How to treat hospital staff

After months of cancer treatments, I have developed an incredible admiration for people in the medical profession.  My admiration for the work of nurses, in particular, knows no boundaries.  They work long shifts for little pay and perform thankless tasks that even my closest relatives would hesitate to do (e.g., cleaning feces, urine, vomit, blood from a bed).  To be sure, nurses are human beings, some of them are nicer than others, some are curt, some are better at certain tasks.  Nevertheless, there is no professional group that I now admire the most.

Despite the fact that nurses and auxiliary hospital staff are trying to, literally, save patient’s lives, it pains me to see hospital visitors treat them with contempt.  Some patients can be a handful in the way that they treat hospital staff, but at least there is some possible reason for their behaviour, namely that they are in pain.  Hospital staff anticipate this type of erratic behaviour and are trained to deal with it.  However, as a hospital visitor you have absolutely no right to treat all hospital staff except with the utmost respect and deference.  If you happen to be visiting your loved one whist a nurse is trying to do some routine test (e.g., taking blood pressure, drawing blood), then you should move away until they are done.  Don’t ever argue, pick fights, ask for tea or coffee to be brought to you.

  

Although there is no earthly reward to compensate for the work of nurses, there are ways to make some amends.  Instead of bringing a box of chocolates or flowers to your loved one, take them to the nurse’s station.  Thank them profusely for they work they do and for taking such good care of your loved one.  These nurses deserve as much and more.