Life – but not as you knew it: Living with chronic cancer

The general perception of cancer is that you get it, you treat it, and then you’re cured. Anyone who has had cancer knows things aren’t quite so easy; cancer treatment can leave you with long-term side effects and it’s often impossible to know whether you’ve been cured or not. There are also ‘chronic’ cancers that can look to those who aren’t in the know like they’re not cancer at all.

In our latest blog, Sarah writes about living with Chronic Myeloid Leukaemia (CML), a blood cancer which requires daily treatment.  Sarah was one of the first women in the world to give birth while on Glivec, a drug which has revolutionised CML-treatment but which can have difficult and disturbing side-effects.  Take a read and let us know what you think. Whatever your health status, we’re sure you’ll agree that Sarah has an important story to tell.


Sarah CML

Guest blogger: Sarah O’Brien

I discovered I had leukaemia by accident.

I was 30 years old and was at the peak of my fitness, running 5 miles every other day and doing aerobics twice a week. I was juggling an NVQ Level 2 Gym Instructing course with being the single mum of a toddler. I had also recently recovered from severe post-natal depression after the birth of my first child three years earlier and was getting over a marriage break up. But my new boyfriend, Kevin, had just moved in with me and we had started to make plans for a future together……things looked really good.

As I had been on medication for depression it was a routine procedure to check my liver count. At one GP appointment, the nurse wasn’t sure what box to tick on the blood-screening test so she decided to tick all of them and my bloods went off for analysis. A week later I was told to go to my local hospital and have a blood test done with a haematologist. The doctor indicated that there could be a problem but advised me to go back to my GP in a month for another blood test. A couple of days after I did that, I received a phone call telling me to go to the hospital the next day. When we got to the waiting room all I could see were leaflets for HIV and cancer.

After a long wait, I was called into see Professor P. I had some more blood tests done and he checked my spleen. He asked us to return in an hour so he could analyse my blood. When we returned, he told me that I likely had Chronic Myeloid Leukaemia (CML). My world crashed around me.

Nine months before I was diagnosed, I lost my Nana to non-Hodgkin lymphoma and Kevin had lost he dad to cancer the year before, so to be told that I had cancer too was a huge shock. On the other hand, we were able to connect some dots. All of a sudden I understood why I had been a lot more tired than usual, and why I was experiencing shortness of breath when walking up stairs. I had also been getting an upset stomach and losing weight.

Having CML was described by the doctors as similar to a long-term chronic illness, like diabetes. But they also mentioned that there were treatment options such as a bone marrow transplant if oral medication did not control the disease. I was told that was very rare for a woman my age to develop CML as it mainly appears in men over 50.

I started a short course of Hydroxyurea before the long-term treatment of Glivec was started. Glivec (Imatinib) is a tyrosine kinase inhibitor (TKI). It stops the tyrosine kinase enzyme that causes the abnormality in the bone marrow that leads to the mass production of immature white blood cells. Glivec is very much the first in a new type of targeted therapy and many new treatments for other cancers are aiming to follow its design.

When I started Glivec, I often felt sick after taking it and I had re-adjust my meals. I had to have large bowls of pasta in the evening just to keep the tablets down, and if I drank cola or tea it would come straight back up. I started to gain weight and went from size 10 to size 14 within a couple of months but I didn’t feel like exercising as the Glivec also caused bone pain.

Telling family and friends about my diagnosis was difficult. My daughter was too young to understand, although she knew that I wasn’t well. Telling my dad was particularly hard as he lives in New Zealand so the distance seemed even greater, especially as we both just wanted to be able to give each other a hug. Some of my friends thought I was being selfish when I wasn’t able to socialise as much as I had done and some friendships have not lasted the distance. My most important relationship, however, has lasted and that’s with my husband Kevin.

Six months after my diagnosis I started feeling very tired. I also had sudden urges for food like donuts and noticed that smells were becoming stronger. I did a pregnancy test that was positive but when I informed the hospital they told me that having the baby would be a gamble; there hadn’t been many successful pregnancies on Glivec anywhere in the world.

We decided to chance it, and it was agreed that I would come off treatment to give my baby the best chance of survival. Everything ran quite smoothly until 23 weeks into the pregnancy. My white cell count started to rise and I was advised to restart treatment, but the lack of information on Glivec and pregnancy was stressful. We didn’t know how safe the drug was for the baby and we worried that the baby’s brain development could be affected. With so little information go on, I spent an agonising week wondering what to do, and what would be best. I eventually restarted Glivec and, six weeks before my due date, I went into spontaneous labour. Our healthy son, Matthew, was only the fourth baby born worldwide on Glivec.

Following Matthew’s birth, Glivec started to impact negatively on my life. I ballooned from a size 14 to size 22, and I found walking hard. I had drenching night sweats, joint pain, heartburn, itchy skin and felt really down. Eventually it was decided that I could try a different drug called Tasigna. Tasigna is taken on an empty stomach, so I was able to cut the heavy meal at night and, as the weight dropped off, I found getting around a lot easier.

Ten years on from my diagnosis, I am far from as fit as I used to be but I am a lot happier with myself than I was. Having lost 70lbs (five stone), I am now about a size 14. The night sweats still happen but they are not as bad. I still have days where I suffer with fatigue and joint pain and it’s known that the long-term use of TKIs can cause heart damage and diabetes. I try to watch what I eat and do some exercise when I can.

I often wonder what the future will hold for me. CML has changed my life drastically; I gave up on my dream of being a gym instructor and I often feel lost about what to do once my kids are older. I have four-monthly blood tests to check that the Tasigna is still working and, so far, I am in “molecular remission”, meaning that CML cells are undetectable in my blood tests. The only cure for CML is a bone marrow transplant, which is a high-risk procedure. On bad days, I often wish I could be cured so I don’t have to think about managing this illness for the rest of my life. On other days, though, I know I am lucky to be alive.

 

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Coping with fatigue after cancer

Fatigue after a cancer diagnosis is one of those issues that many people experience, but that few discuss and even fewer understand.  At Shine, we know that cancer fatigue often lasts far longer than the period when everyone expects you to be ill – if you’ve finished your treatment, friends and family often expect you to be back to normal relatively soon. And if you’re living with a chronic cancer, you might not look ill or tired, making it even more tricky to explain to people exactly why you feel so wiped out.

In this week’s blog, Sam shares her experiences of coping with fatigue, the impact is has, and how she is coping. Please share this if you can – the more people understand how tiring cancer is the better!


 

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Guest blogger: Sam Reynolds

The first virtue in a soldier is endurance of fatigue; courage is only the second virtue.
– Napoleon Bonaparte

Living with cancer-related fatigue is like walking through quick sand. You constantly feel as if something is pulling you down or that you’re fighting a current. Whether you are going through treatment, recovering, or moving forward, once you have succumbed to the drugs and/or surgery that help your body fight the cancer, it’s as if your body has crossed a line and you can’t turn back. Fatigue is the shadow that the drugs leave behind, and I don’t think my energy levels will ever go back to what they were before cancer. I battle with this every day and have done since I first had chemotherapy eight years ago. After two rounds of radiotherapy, seven years of Tamoxifen, three operations and now Zoladex, believe me when I say that fatigue is something I have had to adapt to for a while.

One could argue that at this particular stage of my life, tiredness is very common. Running after small kids, managing your home life, holding down a job and being busy with ‘life’ makes us all feel wiped out on a daily basis. But chronic fatigue is more than this; it is a state of mind as well as a form of exhaustion. It can become a vicious circle: as the tiredness gets worse, your mood gets lower and you fall into a spiral of depression. It’s draining and cancer patients often feel isolated because suddenly the difference between normal tiredness and cancer-related fatigue (CRF) are that much bigger.

An expert panel of the National Comprehensive Cancer Network (NCCN) recently proposed the following definition of cancer-related fatigue (CRF): a common, persistent, and subjective sense of tiredness related to cancer or to treatment for cancer that interferes with usual functioning. This fatigue differs from the fatigue of everyday life, which usually is temporary and is relieved by rest. CRF is more severe, more distressing, and usually is not relieved by rest.
– Roberto Stasi MD

The effect CRF has on being a mother, a wife and my day-to-day life are huge. It has become a standard joke that I’m in bed at 9pm, though this doesn’t always mean I sleep. Insomnia can be a brutal part of fatigue, brought on by side effects of certain drugs. I experience days when I feel like my body is made of lead and I am literally dragging myself out of bed. My mood can be low and the most basic tasks feel like a marathon, yet I know some people who experience this much more severely and consistently than me.

Everyone is different and what has worked for me may not work for others. Over the last few years I have found a few tools that have helped; this hasn’t been easy and I have had to actively make changes to my routine, diet and outlook in order to cope.

One of the things I’ve recently tried is to cutting out sugar. I am not about to preach about the different diets we can all try and all the ‘nasties’ we should be avoiding, but over the last few years it has become apparent to me how much my body suffers from eating refined sugar. Being the chocoholic I am, this has been a huge sacrifice! Still, I gave it up completely a month ago and think I already feel better. In any case, giving up sugar certainly isn’t bad for you!

After my second diagnosis I did a mindfulness course and, while it was a good distraction at the time, I failed miserably at regular practice. How on earth do you manage to sit and meditate with a three year- old who doesn’t nap anymore?!

 

After my third diagnosis, however, I realised that the pressure I was putting on myself to meditate every day wasn’t necessary. If I did it for five minutes three times a week, that was enough. Even having five minutes in bed before falling asleep at night is better than nothing at all. I also began to appreciate that mindfulness is simply a way of standing back once in a while and taking time to breathe properly. It is a chance to have some space to oxygenate my body. This, in turn, has slowly begun to make me feel more energised and calmer at certain times.

In the same vein, yoga has also become a proactive way of helping me manage my fatigue. I’m in the process of getting into a steady and regular routine with classes but stretching and breathing deeply has also slowly started to help, especially after my most recent major surgery.

Fatigue will always be a factor in my life and I regularly find myself rebelling against it only to crash and burn as soon as my body catches up. Having an understanding network around me has been hugely important, as has honesty. I often fall into the trap of looking like I’m coping even though underneath I am paddling like hell. Charities like CRUK have a lot of information on chronic fatigue and there are loads of ways they can help you deal with it. You may feel its one step forward, two steps back but at least you’re moving forward and there is nothing wrong with a step at a time!

Sam blogs regularly at samspaceblog.wordpress.com and tweets from @samboreynolds1.