Is my blood cancer a terminal illness?

This article follows on from one called “How long will I live with Blood cancer?” which essentially looked at the question “Is blood cancer a terminal illness?” If you mean by that does everyone who has blood cancer die shortly after the diagnosis the answer is an emphatic NO. You may want to read the previous article for more information about this before continuing:

The problem is that some people have different definitions of what a terminal illness means, and so you some people may be told by their doctor that their blood cancer is terminal. If so you should ask them what they mean by that. It is possible that they simply mean that your version of blood cancer is not curable, but may be controllable and we will speak more of that in another article in this series.

The word “terminal” has so many negative connotations that it is not the best word to describe most patients with blood cancer. The word itself then is in my view firmly in the list of unhelpful things doctors sometimes say to patients. Here is one definition of terminal which I think is more helpful and which would exclude the vast majority of those recently diagnosed with a blood cancer:

“Terminal cancer is cancer which can’t be cured and isn’t responding to treatment, and that the person is likely to die from . . .

Terminal cancer is different to advanced cancer. Although advanced cancer is also incurable, people with advanced cancer may still have treatments which could help to prolong their life.”

https://www.mariecurie.org.uk/who/terminal-illness-definition

Sometimes doctors will say things that might be unhelpful for some but which are very helpful for the person in front of them. Wisdom is all about knowing what to say to the specific person you are speaking to at that specific time.

When I wrote about my first year of living with a blood cancer diagnosis I recalled the experience of listening to Matt Chandler, a well known pastor speaking about being diagnosed with brain cancer:

When Chandler’s wife asked the doctor what the best case and worst case scenario was, the unconventional answer was that the best case would that he would never be given the all clear, and that his cancer could come back to bite at any time. As for the worst case, he was told “well, you could always be hit by a truck on the way home and die instantly”.

I will never forget Chandler preaching at Jubilee Church London still with a closely cropped head of hair because of chemotherapy.

Matt explained to us then that he will never be free of what is effectively a sword hanging over his head. He lives each day as a man who may die tomorrow.

Yet with a steely gaze, staring down the congregation as though we were one person he implored us, “the only difference between you and me is that I realise it.”

None of us can guarantee we will live to 90 years old with no sickness and then peacefully pass away in our sleep. But the uncertainly works both ways. Ten years after Chandler’s diagnosis of an aggressive brain tumour, he is still alive and enthusiastically working as a pastor. He is an example of how many cancers can be successfully treated.

https://bloodcanceruncensored.com/wp-content/uploads/2020/05/The-day-leukaemia-changed-my-life-1.pdf See also Adrian’s recent interview with Matt Chandler.

This article is about what we can do to maximise our chances of being someone who beats the odds and lives with blood cancer in some cases for decades. But before we get onto that, there is one other terminology question we should address because it is important and could potentially gain you a large amount of money:

Is my blood cancer a critical illness?

Some of us are able to claim on our life insurance as soon as we receive a cancer diagnosis. This was something I did not realise for quite a few months. And it all depends on the precise wording of our policies and whether we decided to spend more money to include “critical illness cover” when we took out the policy. And having just been talking about positivity and how it is usually best not to think of our disease as terminal it can feel a bit odd to suddenly talk about life insurance.

But I would be remiss not to mention that any cancer diagnosis usually qualifies as a critical illness so it is definitely worth checking those old life insurance policies and claiming on any that included such cover. Money doesn’t solve everything but it certainly can make a difference at a difficult time.

What can I do to live longer with blood cancer?

If we want to live a long time with our blood cancer there are some things we can do are as follows.

• Resolve straight away that you will follow evidence based medicine There are sadly many examples of people who have rejected the advice of expert doctors and gone to exclusively alternative treatment pathways such as diet, supplements, etc. This is in many sitautions a sure way to an early death. Let me save you the effort of research there is NO evidence that any alternative treatment will cure blood cancer and save your life.

  There are often accounts online that sound too good to be true, usually because they are not true. Some people neglect to mention that as well as whatever intervention they are selling they also took conventional treatment and that the impressive results were heavily influenced by chemotherapy or surgery. Others may simply have been very fortunate and had a milder disease or even a spontaneous remission which does happen rarely. Even if one person did have a seemingly miraculous response associated with taking a particular alternative treatment this does not mean that it will work for everyone.

  The gold standard of medical proof is a randomised controlled trial (RCT), and this is almost never performed for alternative treatments. All this is not to say that some of these therapies may not have a place in improving your general health or simply making you feel better. But that place is alongside the monitoring and treatment offered by modern medicine which is based on clinical research that costs hundreds of millions and has proven benefits in extending life. If you are considering using a specific alternative therapy one reliable source of information is the Cancer Research UK website which talks about many individual therapies explaining their potential benefits and in some cases risks.

• Learn as much as you can about your condition so you know what to look out for. But do not let your disease define you so you are doing nothing more than waiting for it to kill you. People who have something to live for tend to live longer than those who don’t.

• Get your general health and fitness under control. Exercising more to become as fit as possible, losing extra weight, improving your diet, stopping smoking, taking enough sleep, even improving your breathing, and other such changes might not have a direct effect on your blood cancer but they may make you stronger and potentially more able to withstand the effects of treatment. They may also make it less likely you will get sick with other conditions. It is easy to forget that heart disease, diabetes, strokes, and other conditions which we can reduce the risk of, still effect people with a blood cancer diagnosis. Sometimes fatigue can make exercise very difficult. But you can start very small. When I was at my worse I could not get on and off my bed. I was advised to start my exercise regime by just lifting my bottom on and off the bed. We moved on to sitting up on the edge of the bed and going from sit to stand a few times. One predictor of lifespan is the ability to get on and off the floor as explained in this video.

• Get under the care of a blood cancer expert.Recent data shows that being seen by a doctor who looks after a good number of people with your specific condition will live longer. This is probably more important for some blood cancers than others. So for example, even though Chronic Lymphocytic leukemia is a slow growing cancer, it has been demonstrated in several studies that those cared for by a team who includes a real expert in the disease live significantly longer. One reason for this seems to be knowing the correct timing for treatment as well as what treatment to offer. There is a lot of evidence that in a chronic cancer like CLL if you treat a group of patients too early some of them will actually die before they would have if you continued watch and wait for too long. Equally, you do not want to leave treatment too late either. Sometimes less expert doctors will want to treat sooner or may offer unusual treatments or older treatments that have now been superseded. It is hard for a generalist doctor to be up to date with each of the over 100 different types of blood cancer and know what the latest research is on all of them. In addition, expert doctors may be able to offer you clinical trials which often means earlier access to innovative new treatments. A subsequent article will address the issue of how do you find an expert.

• Get serious about infection prevention and timely treatment of infections. This is more important for some types of blood cancer than others, but all blood cancer patients have been labeled as at high risk of complications to the Covid19 virus. With some types of blood cancers the damage to your immune system means you are more likely to die of an infection than directly because the number of cancer cells get too high. Most blood cancer patients are eligible for additional vaccinations which should be taken early on if possible (no live vaccines tho). A pneumonia vaccine taken now might save your life in five years. If you get frequent infections it is worth asking your team about whether your should take prophylactic antibiotics and other medicines to prevent them. Some people end up needing antibody replacement treatment.

• Seek medical help more readily than you did previously For example I never take Panadol/ paracetamol / acetaminophen/ ibruofen to lower my temp as that can mask an infection. If I get a mildly elevated temp or any other symptoms of an infection. it’s time to discuss with a GP / primary care doctor and/ or the nurse specialist 24/7 helpline I have access to.

• If that temp goes above 38C / 100.4F it’s straight down to a trusted ER / A and E department for a proper infection screen. Ideally you’d want that department to have blood cancer specialist doctors in the hospital 24/7. I do not ignore any symptoms but deal with them knowing full well it will normally be nothing. But also knowing that something as small as a mosquito bite might get infected and if untreated could lead to cellulitis, which can have serious consequences. Rather go and be checked out and sent home than not go when you need to. .

• Monitor yourself carefully for signs of other cancers or other new diagnoses. People with most blood cancers are also at a higher risk of developing other cancers. Catch them early and hopefully the doctors can deal with them more easily. Ignore new symptoms that turn out to be due to a cancer and that can sometimes become a bigger problem than your blood cancer.

• Take a wholistic view of your entire life Do whatever you can to reduce stress to acceptable levels and yet also stretch yourself to give yourself meaning and purpose. Work hard on your psychology with a therapist if needed and fix your relationships. A healthy approach to your emotions, thought life and behaviour management will pay huge dividends. Be aware of your mood and if it begins to get low ask for help and support. Learn to do it from the right people. A friend of mine has a list of something like 50 small things he has implemented to try and improve his general health and wellbeing. He knows some may not be helping but the general package seems to work for him. Don’t put all your trust in one thing even if that’s a major thing like a certain lifestyle that’s offered as a cure all. We are biological, psychological, social and spiritual beings. Improving our health to optimum levels involves addressing each of these areas. Here is a list of simple steps we can consider to help is in each area:

It is crucial that we learn to approach our blood cancer with honesty, realism, allowing our emotions to be expressed appropriately, and yet that we hold onto hope and optimism. This balance is not easy, but over time most of us learn how to better handle the uncertainty and emotional challenges that living with blood cancer presents us with. We do often need help, however, so do not be afraid to reach out to professionals, counsellors, and as appropriate members of your friends and family for the support we all need.

We truly live in exciting times for the treatment of blood cancers as many new drugs have been made available recently and still more are on the way.

In summary it is wise to be prepared for everything that blood cancer can throw at you. But it is essential to hold onto hope for the best outcome and do what we can to promote health, whilst monitoring for symptoms which we may need to act upon.

A diagnosis of blood cancer does not usually signify the end of your life. As much as it is a challenge, and will normally lead to a period of emotional turmoil, many people live with blood cancer for decades. Why shouldn’t you be one of them?

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