What To Expect When Recovering From Cancer

Following my blog “One thing you need to know about surviving cancer”, I promised I would write a follow up blog giving greater details of what you can expect should you or a loved one kick cancer’s butt to the curb and become a cancer survivor. True to my word, here it is.

What after effects does someone who’s a cancer survivor have to manage for the rest of their life?

Well, EVERY cancer journey is different and unique for EVERY single person. I can only talk about it from the perspective of someone just under the age of 40, who’s had a lumpectomy and lymph nodes removed for breast cancer, not someone who’s had a mastectomy or is in their 60s. I can only give you information I’ve discovered from fellow recoverees and my medical team, but this information will give you an indication of what it might be like for someone who is a cancer survivor, particularly in the first 5 years after treatment.

Physical After Effects of Surviving Cancer

Recovering and repairing from initial treatment:

• When someone has experienced intensive treatments such as chemo and radiation, their body has been totally annihilated. For example, your core strength is totally stripped. Just getting up off the floor is an effort. I couldn’t even jump up and down on the spot anymore. It takes a very long time to regain this strength. 20 months on and I am still only half way there. I will never forget the day (only about 3 months ago) I could finally jump up and down again. I burst into tears with sheer joy! I’m still working on getting up off the floor properly.
• Dealing with the tissue and cell damage is another thing. Radiation can create deep tissue scaring that the eye cannot see, not just on the tissues and muscles, but also the lung (or other parts of the body depending on the area of treatment). These tissues and muscles can tighten very easily, restricting movement and even the flow of fluid.
• Then there’s the removal of lymph nodes. The lymphatic system is your body’s fluid drainage system. If it has been disrupted, then you have to teach the fluid to drain via other pathways. A build-up of fluid creates swelling and can lead to lymphedema. This is why recoverees wear compression garments, to assist this fluid to flow. It can also mean that you still require support from your physio, long after initial treatment has finished.
• Fatigue, feeling exhausted or lacking energy for day-to-day activities. This is the most common of the side effects. Fatigue differs from normal tiredness as it often doesn’t go away with rest or sleep. I still struggle with this one!
• Sun sensitivity – treatment can increase your sensitivity to UV rays. If you are someone who enjoys a trip to the beach, like me, you have to be extra careful when out in the sun that you don’t get burnt.
• Fertility – chemo can also create fertility issues and in some cases, create permanent infertility. This can be very confronting for some people. A fertility specialist can help you address these. Menopausal symptoms can change and there may even be issues with sexuality.
• Cognitive changes (sometimes called ‘chemo brain’) where you can suffer a varied list of mild effects such as getting mild memory loss, getting tongue tied or not being able to say the word that’s on the tip of your tongue, saying the wrong word to what you mean, stumbling over your words, stuttering or other speech issues. I am told chemo drugs can stay in your system up to 2 years after you finish chemotherapy. It can be years before you feel like these are no longer an issue. Since recovery, I have stumbled over my words A LOT! But as time passes, this has got better and I’m almost back to normal.
• Pain – in many forms. Muscular, skeletal, or dull aches like you are getting the flu.
• Weight loss or gain, eating and drinking issues, and even bladder and bowel changes. I’ve had to deal with the 12kgs I put on through my treatment. This is extremely hard to do when your general fitness has been blown out of the water. But I’ve managed to shake off almost all of that now.
• There are a few other issues or changes. They can occur in the teeth, mouth or hair.

Side effects from post-cancer medication:

Depending on your cancer type and age, you may been on some pretty heavy duty medication for many, many years to come after treatment. This is usually an extra measure to help keep the cancer away. Because of the nature of these meds, they can come with some pretty powerful side effects such as:

• Hot flushed & hot sweats (particularly at night whilst sleeping creating a knock on side effect of lack of sleep/tiredness)
• Joint aches and pains like you are getting the flu, hobbling when you get out of bed or up off a chair
• Fatigue
• Nausea feeling
• Sleeping difficulties
• Bone density loss (osteoporosis)
• Other deficiencies such as Vitamin D
• Again, issues with your hair or mouth. I had to have my wisdom teeth pulled out before I started any post-cancer medication because of a side effect from the meds and the healing of gums.

Mental & Emotional After Effects of Surviving Cancer

Recovery is not just about healing your body, but also healing your mind.

• As I said before, there is a grieving process to go through. You are grieving for the life you thought you were going to have and the direction you thought it was heading. Your priorities in life have to change to accommodate your physical needs. What was once your main focus may now be a little lower down on the list. Eventually, you have to accept the way your life is now going and figure out your own way to work with it, instead of against it. Your “new normal”. People can take months or even years to find their “new normal”. There are such a range of emotions you can feel in this time. They are no different to dealing with someone who has passed away, except it’s your own life you are grieving over, not somebody else.
• In some cases, there is also the fear of reoccurrence. This is unlikely, but it does happen and it’s a real and common emotion. For some people, this emotion can make it difficult for them to experience joy in their lives and make plans for the future. It is sometimes described as having a shadow in your life.
• Often, recoverees can also feel stressed or overwhelmed. This is because now that your treatment is finished, all those projects you had temporarily stopped while you were receiving treatment have built up and your “to-do” list is getting longer and longer. Don’t feel like you have to do everything at once. Slowly ease back in to it.
• Lingering feelings of sadness and anger can creep up on you while in recovery. For many people, these feelings will dissipate. But for others, these feelings can develop into depression.
• Self-consciousness in appearance – Cancer treatment can change the way your body looks and how it works. This may affect how your feel about your body of how you believe people might react to your new body. It takes time to adjust to these changes and this can bring on many different emotions.
• Loneliness – Cancer can be isolating. You are so busy dealing with treatment that you can lose touch with your friends or work colleagues. Their lives seem to evolve and move on and yours was forced to halt. It can be difficult to reconnect with them and feel like a huge effort to “catch up” with everything that has been happening in their lives.

Where do I currently sit in all of this?

Well, I’m a work in progress, just like all other cancer survivors. Most of the time I am my bright and bubbly self. However, I can have rare moments where many of these things can hit me at once. I quietly suffered many intense side effects from the post-cancer meds for over 12 months. In the end, after many combinations and trying hard, I made the choice that it was better for me if I was off the medications (that was what was best for me, not everyone is the same). But I am resilient and I have learnt a few things in the last 20 months since I went into recovery. Firstly, be very, VERY kind to yourself. Don’t beat yourself up over the fact you are not quite there yet. Give yourself permission to take the time to regain what was lost (physically), do what you can and what feels right for you to recover. But keep chipping away at it. Don’t give up, even if you have a setback. Get up and go again. You only fail if you stop and let it. I’m still going. I’m not 100% there yet. But I will get there!

The other thing I have learnt recently is to take time to be grateful. I am forever the optimist. Always looking for the silver lining. The glass is always half full, not half empty. Always trying to find the positive in each situation in my life. When you have been through cancer and had many things to deal with, this can be difficult. But I found it. I am grateful that I am alive, that I have a second chance at living. I am grateful that my body can still function fairly normally. I haven’t lost any of my main senses. I am independent. My hair has grown back and I’m back at full-time work. I am happy.

Should you, or any person you know require any support or further information on cancer or cancer-related issues, or you feel like you are not coping, please see a medical practitioner or contact the Cancer Council Queensland Helpline on 13 11 20. This is a confidential service. You can also visit their website. Other States in Australia also have their own Cancer Council sites.

Please remember….. Any cancer story portrayed on this blog site is a reflection on my cancer experiences only. Each cancer experience is uniquely different. My words do not reflect the thoughts and feelings of other cancer patients or survivors. They are in no way to be taken as medical advice. Should you have any concerns, please seek professional help as I am not a medical practitioner.