The Reluctant Carer

My journey as a reluctant carer for my husband

 

My journey as a reluctant carer for my husband

This reluctance does not come from a lack of love, but I had other plans for my life, and cancer was not part of it.

Cancer entered our life overnight. No waiting for test results, or weeks of indecisiveness. The doctor took one look at his lumps in his groin and instantly knew. Geoff was sent for tests to confirm, but there was no doubt.

That was just before Easter in 2016. Within a week we were seeing an oncologist who was very clear. Yes, Geoff has Lymphoma – a cancer of the lymphatic system that also affects the bone marrow. He needed a biopsy to be clear about the specific types. They are divided into two basic groups, the really bad ones that could kill you quickly if chemo didn’t work, but when it works, you are cured. Or the more chronic types, that will probably not kill you straight away, but chemo doesn’t work that well for.

Turns out Geoff has the chronic version, but it was fairly advanced, so it was suggested that chemo is started immediately.

Now you might be asking how did he not know he had cancer if it was now advanced? Well, the symptoms of Lymphoma are excess sweating and feeling hot and tired. He had been having those symptoms when we look back, but we live in Brisbane and it had been a hot summer!!! Everyone was hot and sweaty, and when you can’t sleep properly, because you are sweating so much, then, of course, you are tired. There is no way we would have thought of going to the Doctor until those lumps grew in his groin.

He came to me one morning asking me to feel his groin. Mmmmm, that sounds like a fun way to fill in the next hour!!! No that was not what he meant. He really wanted me to feel these fat lumps in the crease of his leg. He thought maybe he had gained so much weight that he now had fat there as well!! I assured him that fat does not grow there, no matter how much weight you put on.

Now despite my lack of a medical degree, I know a fair bit of medical stuff. After all, I have successfully raised 12 children through all the illnesses and accidents of life, and there have been plenty. I really think I should have a medical degree as I have seen more things than many doctors. Scarlet Fever anyone!!

So, I knew that this was not fat, and I knew this was where lymph glands hang out, but I had never seen anything like this. They looked like 7cm x 3cm lumps of fat, just under the surface of the skin on both sides. It was obvious. How long had he noticed them? A couple of weeks, but he presumed they would go away, but instead they were getting bigger. I suggested he should go visit the doctor straight away. Now remember that I think I already have a medical degree, so I never suggest going to the doctor unless something is hanging off, but this was weird.

Cancer diagnosis

We still did not think cancer, but the doctor did – instantly. And here we were just over a week later discussing Chemotherapy options, and did we want to start the week before Easter or the week after. Ahhhhh, mmm, luckily, we didn’t have anything major planned, and Geoff opted for the earlier date. He figured the earlier he started, the quicker he would be cured and get back to the life he had planned.

He was 68 years old, and still working 12 hour days, and most days of the week. He had always worked full, full time. It is the only way he knew to live life. He had dreams of retiring at 70. I am not sure he would have!! I could not imagine him as a retired person.

He started chemo and he responded badly on the first day. He started shaking terribly, very cold all over, and all his vitals going crazy. They slowed down the speed of treatment and gave him medication to stop the reaction. This made him very sleepy. This was a major scare to both of us. Geoff was a fit strong, healthy man who had never been sick. He threw off every ailment that had threatened him. Even colds were just an annoyance while you kept working. To see him shaking so violently and so out of control was a shock. The nurses just took it in their stride. I do think there needs to be some thought given to someone watching this for the first time. It is scary.

This was day 1 of 3 for the first round, and he was supposed to have 6 rounds. Because of his reaction, they had to give him the dosage very slowly and it took all day for three days. And despite how bad he felt, the drugs they were giving him and his poor reaction, he kept working. He answered the phone and emails. Because this was not really happening, it was a small blip in his plans.

He survived this first round of treatment and was back working 12 hour days straight away. He came back a month later for a second round. Again they had to take it slowly because he reacted, and he had an overnight stay to keep the treatment going. Second round finished, but just within two weeks, he was in the hospital with an infection, high temperatures, sweating, and uncontrollable shakes. They tested him for every bug they could think of, kept him out of harm’s way in isolation, and gave him special irradiated food to eat. His white blood count was dangerously low, and not picking up. He eventually came home, but still weak. The third treatment was supposed to start, but his white blood count was too low still and they could not afford to kill anymore off. They gave him only part of the treatment. It took weeks and weeks before his blood count came close to normal. The Doctor decided that this treatment was not going to work. It had not killed any cancer but had tried to kill the patient. It was not going according to plan.

 

Trial Drugs

Once his blood count came back to near normal, he was offered a trial drug. This was designated for people who the standard treatment didn’t work. So, he fitted that criterion. He was sicker than ever and having to slow down. He spent more time in the hospital with fear of infections.

After a battery of tests, he was ready to start on the trial drug. It worked nearly instantly. It really was the miracle cure. He improved constantly throughout the 6-month trial, and on the last bone marrow test, there was no cancer detectable in his bone marrow.

They call that remission. Not sure how you call it that when it is still throughout the whole lymphatic system, but at least not in the bone marrow, which is where white blood cells are made, along with many other goodies like platelets that help to stop bleeding.

Even after those few treatments, Geoff had lost most of the hair off his body, but nothing off his head. He also bruised easier, and his skin was softer. It was weird. He felt like a different person. He was so different to touch. It did not feel like Geoff.

No-one seems to talk about this. We are attracted to the inner person – of course. But really, we are attracted to the outside too. How he smells, how he feels and how he behaves are all part of the package that you like. Imagine someone who now feels very different to touch. He had been a very muscularly body with quite a bit of body hair. His body hair was gone, and his skin felt softer than mine. He was constantly hurting himself because he didn’t know how to look after soft skin. We girls know that if you want to break a pile of palm leaves you will need your gloves on, and a pair of sectors too. He tried breaking the with his hands one day and ripped his palms to pieces. I showed him where the gloves were and how us soft skinned people did jobs.

I was not attracted to him sexually either. This caused some issues between us because all I could say was that he smelt different and felt different and it didn’t feel like Geoff. He didn’t get it. I tried to get used to the different person, but I just couldn’t.

Cancer is in remission

As part of the trial drug protocols, you can keep taking the drug as long as you want, and they will keep supplying as no-one knows what is going to happen next. That is part of what is discovered during the trial. Geoff chose to stay on the trial drug as he had had marvelous results and he wanted it to stay that way. He stayed on the drug for nearly 18 months. He was the poster boy, as his story was such a great turnaround. He worked up to and past his 70th birthday, in September until we went on holiday at the end of November 2017. An amazing trip through Italy, to Paris and then onto London and the south of England. Just towards the end of the trip, he started to fade, but it had been a whirlwind tour.

We come back to full-on Christmas, and a new baby born to my daughter on the 30th December, visitors, and some of Geoff s projects just finishing. He was getting sicker and sicker by the day, and coughing persistently, but he had deadlines and just wanted to get things finished, then he would go to the doctor.

Scary start to 2018

By Thursday 25th January, I have had enough and phoned the oncologist, who suggested it was pneumonia and to bring him straight in. Within 24 hours he was in intensive care and was there for two weeks. He had an 80% chance of dying, and they were throwing every medication at him, to try and fight the infection. It was a very serious strain of Pneumonia that is hard to treat. They believe that his underlying fitness was a major reason he survived. But gee it was scary.

This was not the dream start to the year, or to the new life of retirement. 3 1/2 weeks in the hospital and he comes bouncing out as if nothing is wrong. He has been given tons of steroids, and he was enjoying life. He seemed to recover from pneumonia, but cancer grew fast and vigorously.

Cancer comes back with a vengeance

By May 2018 he could hardly get out of bed to go to the toilet. He would lie around the house and sleep all day – well he would if he could. While he was this sick, we did a major renovation on the house. This had all been arranged when he was feeling so well after getting out of the hospital, and it was all set up and paid for. It was too hard to stop, so the tradesman pulled our house apart on Easter Tuesday, and we lived in a mess for 4 weeks. He would get out of bed and go outside and lie down again. That was it.

The doctor agreed that the trial drug had stopped working, and he needed something else and fast. And that is what happened. Within the day, he was on another drug and a different type of chemo. He picked up quickly. One week a wheelchair, the next a cane, the next he was walking easily and unaided.

There are risks and complications to the new treatment. He had to add tablets to protect his liver from the chemicals. He has to drink 3 litres of water per day to protect the kidneys. He needs to take his tablets with food to protect his stomach. And we have discovered that the balance is so fine that he needs to take the tablets at exactly the right time, or symptoms appear very quickly.

The symptoms are high temperature – like 38.9 C. Now for most people, this would mean a trip to the Doctor but after repeated trips to the hospital with suspected infections, and not finding any, this is now seen as a symptom and ignored. That is great if you are the doctor, but not so easy if you are the person sleeping beside someone who starts to shake uncontrollably and then gets a massive temperature and then a few hours later, the temperature drops that the body starts to sweat. This cycle takes about 5 hours, and he is uncomfortable the whole time (and so am I).