Congratulations on finishing treatment.
It really is a HUGE accomplishment, so take the time to celebrate!
Now that treatment is over, it’s time to get back to normal, right? Not necessarily. What was your normal before cancer may not be the same normal you are experiencing now or will experience in the future. Cancer changes people in many ways and by acknowledging that, it may make it easier for you to find your new normal.
I had to work at accepting a new normal, life just doesn’t revert back to the way it was. You have been through a lot and your body is not completely the same. Its not all magically over once treatment stops.
One thing we have noticed in so many of the people that we have helped over the years is that the need for mental health support increases post treatment. Once the treatment rollercoaster and endless Dr’s appointments are over, that laser focus you have had on just getting through the treatment, may need a little help to reset.
'After I completed all my treatment and didn’t have to go to the Dr’s so much anymore, I felt a little lost. When I finally had time to catch my breath and think, I wasn’t sure how I was going to cope emotionally.' JT
Below are just some of the changes that people we have helped in the past have experienced. We have included this information as a way of letting you know that you are not alone if you have similar issues. If you haven’t experienced any of these issues, that’s great! Don’t assume they will arise, remember every body is different. Please note that this information may not be complete, as we will be continually updating.
Physical Changes
Exhaustion. Your body has just gone through something pretty major and it may take it a little while to recover. In particular, it takes time for energy levels to pick up, so try to be patient.
Insomnia is not uncommon in people who have undergone cancer treatment, especially if you wake up in the middle of the night and the mind starts spinning. There are a range of mindfulness and mental health techniques that may help you drift back off to sleep.
Hair returning. Don’t necessarily expect your hair to return to the way it was before chemo. Hair that was straight may grow back curly, or vice versus. And the colour, well that’s a bit of a lucky dip too.
Breast changes or removal. Adapting to wearing a prosthetic can take time. But it is up to you if you want to wear one or not. If your old clothes don’t work or look right anymore, try something new. Looser fitting tops may be more comfortable.
'I really didn’t like wearing a prosthetic, but felt like it is necessary to look “normal”'.
Stoma and or colostomy bag. Learning to manage a stoma and or colostomy bag takes practice. The itching and dryness can be managed with regular use of a good moisturiser. While working out how to hide it takes a bit of time and experimenting. If your old clothes don’t work or look right anymore, try something new. Looser fitting tops may be more comfortable.
Medications - Managing multiple medication timings can be tricky. A good calendar or diary can be helpful, and make sure you cross off what you have taken to avoid confusion later. If you are experiencing side effects, make sure you talk to you Dr about possible alternatives.
Neuropathy. If you have developed neuropathy as a result of your treatment, talk to you Dr about ways to manage it. Oncology Massage can be helpful and a good oncology massage therapist can give you exercises to do between sessions to help. It can be frustrating if you are not able to do some activities that you enjoyed previously. In some cases, extra care needs to be taken around hot or cold sources to avoid further injury.
Men's Health - Erectile dysfunction and Incontinence are common side effects of surgery and treatment for prostate cancer. There is lots of information however on the different treatments and side effects and there are physiotherapists who specialise in pre operative treatments to help prepare and manage some side effects.
Emotional Issues -Life post treatment is different for everyone. Experiences and the speed of recovery is a very individual process, and it can be difficult when you feel like yours is taking longer than others. Finishing treatment leaves some people feeling strong, ready to take on anything and that life is better than before. We have even had some people ‘thank cancer’ for giving then a wake up call, making them stop and really think about their lives. However others struggle to make peace with their new normal. They may not want to make plans in case they need to be changed. Or they may be hopeful but experiencing a slow, achy, emotional recovery. Whichever group you fit into, or if you are somewhere in between, be patient with yourself and reach out to others either in a support group or mental health services to help you through.
'It can be difficult to accept a new normal, life just doesn’t revert. You have been through a lot and your body is not completely the same'.
'Its not all magically over once treatment stops'.
Confronting
Looking at your new body in the mirror can be confronting and upsetting. While you know in your mind that you may look different, the reality can still take time to adjust to. It is important to acknowledge the loss of a part of your body, whether it is externally visible like a breast or testicle, or internal such as part of an organ.
Guilt
This can be a big one, especially after treatment.
If someone you know or met during treatment doesn’t make it, then you may experience survivors guilt. If you don’t experience the side effects or are as sick as others, you may feel guilty about that. And finally, if the cancer is genetic, you may experience fear, worry and guilt about passing it onto your kids.
Alone
If you are one of the lucky ones and don’t look particularly ill or lose your hair, this can confuse others who may have heard of your diagnoses. Their comments about how good you look ‘considering’ can leave you feeling alone and isolated, or like you have a secret illness.
Then there are the people you may not have seen in a while and struggle to recognise you with your ‘new look’.
'People treat you differently, often they look away and avoid you as they don’t know what to say. Then when treatment is over and you’re not sick, they come back and it can be hard to navigate those feelings'.
Emotional Rollercoaster
'I often feel like I’m being ‘bitchy’ because I’m tired and just all over the place with my emotions'.
It seems that once treatment stops, and life isn’t dictated by constant medical appointments, all kinds of emotions bubble to the surface. The rollercoaster means that you may have good days, not so good days and bad days as you process what you have been through and try to find your new normal. If your energy levels are still low, this can be frustrating and increase the speed on the rollercoaster.
Then there are the emotions that you are feeling but can’t express to your family or friends, either because they won’t understand or you don’t want to scare them.
If you are experiencing any of the emotions mentioned in this segment, we strongly encourage you to reach out and talk to someone.
Fear of Recurrence (FOR) and Scan Anxiety (Scanxiety)
These are very real things that many people who have been diagnosed with and treated for cancer experience. A diagnosis never truly leaves you and often the week before scans is difficult.
'I sometimes don’t notice I’m anxious, then I find myself behaving in different ways and realise my scan is the next week and I then realise how much its effecting me'.
FOR may make it difficult to sleep and disrupt your appetite. Thoughts of it coming back, having to do more treatment and tell others can really take its toll on your emotional wellbeing. And of course, once the scan is over you have to wait for the results and that can often be difficult. Being aware that this isn’t just you being silly and coming up with ways to manage the fear and anxiety are important.
After a cancer diagnoses, many people become hyper aware of their body. Even when you don’t have a scan coming up, you may notice any ache or change in your body and be worried.
'I get stressed when I have a pain or weird body thing. Is it the cancer, treatment, or just normal'?
This is where talking to others who have experienced similar treatments can reassure you. If you have medical concerns, go see your Dr.
Family and Friends
Just as you work to find your new normal, so will those around you.
'Family is well meaning but also overbearing and check in either too frequently or not at all, doesn’t seem to be a happy medium'.
Partners can be overprotective, overly nice or treat you like you are helpless and can’t do anything. They may not know how to act or what to do to help, so you need to tell them. Try to be open and honest about what you need right now, and what you don’t.
Answering the kids questions and dealing with their worries when you have the same ones, or you don’t know the answers, can be stressful. Be open and honest with them too, and if you don’t know the answer to a question, tell them that and that you will let them know once you figure it out.
Friendships can be tricky at this time too.
'People stop talking to you about their lives and their issues as they don’t want to burden you or say that your stuff is much worse. It stops feeling like a two-way friendship'.
'People only want to talk about cancer, but I am more than just my cancer, I’d like to talk about normal run of the mill things and feel I can complain about small annoying things'.
Some friends have trouble coping and just don’t know what to do or say. Be honest and open about how things are for you and what you value about the friendship as a way to explain to them what you need.
'You socialise differently, can’t drink, and do the same activities as before, so you need to find a different way to connect to friends'.
'I feel like I’m always talking and reminding friends and family to have their check-ups, I want them all to be ok and not have to go through this'.
And the support people who were there for you throughout treatment, this is a time of adjustment for them too.
'Support people need support'.
Click here to see some of the resources available for support people or carers.