Finding a new normal

How has life changed since finishing treatment?

I have always, fortunately, been on watch and wait but my life has changed since diagnosis. I was going through life on auto pilot with a life plan mapped out. Since diagnosis I have organised what I can and my husband laughs at me as I have got my will and music for my funeral sorted, which I do not feel is morbid, but organised. We have moved to a flat so I have really de-cluttered and downsized and I try to dispose of something every time I buy something
I really appreciate everything in life, the simple things like nature and architecture. My family and friends a the most important thing for me. My music comes a close second. I try to live in the day and I really appreciate life. I do more things for myself and I actually spend some money on myself now which I never allowed myself to do before. I eat healthier, with some treats, and get fresh air and exercise. If I feel tired or fatigued I do have a little nap. I do not care what I look like and I love my Zumba classes and pilates. I talk and smile at everyone, people are so important. I try to look at things positively, not negatively, and I am really grateful and appreciate every day.

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My situation is very different from Erica’s. I was diagnosed with AML and immediately thrown into a whirlwind of treatment. 18 months later I came out of treatment in remission but physically and emotionally battered by the experience. I like to think that the new me has now reached a point where I am not that different from the old me, but it’s taken 2.5 years. In the immediate aftermath, I had to deal with fatigue and I also felt very fragile and vulnerable. The important thing is to take things slowly. There is no need to stop living but you have to learn to build in rest time and rest days. Go for a walk, but sit down and have a cup of tea afterwards. Go out for a meal, but make it lunchtime rather than dinner. Have a day out, but have a rest day the next day… You get the idea. The key is not to push yourself too hard. You also have to learn to put yourself first. If You feel too drained to attend a friend’s birthday party, be honest and say you aren’t up to It, but offer an alternative you can manage like a cup of tea at your house another day. People will understand. I was surprised how lovely people were once I finally found the courage to speak up like that.
I had knock backs too, and so will you. Try not to get disheartened, you just have to adjust your sights and keep going. Slowly, slowly, slowly…

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Hello @Jane,

Thank you for your tips regarding a new normal. Some of our members will use that information effectively.

Hello @Erica,

Did you feel rushed to into social life or expected to return to normal after treatment?

@Jane did you feel the same way?

I would say the exact opposite. Friends and family who knew what I had been through were incredibly protective of me as though I were a small child!

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Hi Josh, I think some people were confused as if I had Leukaemia (it was thought to be quite a rapid killer in 2003) why was I not having treatment immediately to make me better. I do not think I told people about my symptoms so they did not know how I was and how I was feeling. People talk about their feelings a lot more now.

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@Jane, I wanted to ask if you are coping well with your new normal life after treatment? I was reading that some people struggle after treatment and not too happy about it. I wanted to know your thoughts?

@Erica I guess some people at the time did not know what “watch and wait” is. I would love to try and find some more people who were also on the watch and wait list to connect with one another.

Yes, I think watch and wait community would be great perhaps it could be part of the Bloodwise Buddies idea Dawn has mentioned. I love the name Bloodwise Buddies.

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Hello @Erica,

I think Bloodwise Buddies is a great idea! I will run it by Dawn.

Don’t forget Bloodwise Buddies was Dawn’s idea in the first place.

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I believe it was yours @Erica but I am happy to take some of the credit - I think it is something we can build to, peer to peer support. A goal for the future, perhaps?

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Hi Dawn, we’re a team and Best Bloodwise Buddies !!

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I wrote a blog on the Bloodwise website https://bloodwise.org.uk/blog/life-after-treatment which, strangely enough, was originally written 4 years ago today. It details how I kick started my new life, and also how I first became involved with Bloodwise. It was not easy, and in some ways recovery after treatment is much harder than when you are having treatment. During treatment you give over so much to your medical team to know what is right for you. Your physical and mental recovery is so much more what you put into it, although bound by your own situation.

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Thanks for sharing your blog @Pisces56 - and a strange coincidence it was 4 years ago today!

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Oh, I loved the Sir Ian Botham and his entourage walks, he was a brilliant ‘ambassador’ for LLR (now Bloodwise). They really were social events and when he did them all round the country I was plotting his progress and he was often seen on TV. I remember I did a fundraiser walk around the Epsom Racecourse in Surrey. I happily went on my own, it was an all day event and I took my picnic and I knew I would not be on my own for long. Everyone was so friendly and all with a blood cancer story to tell. The weather had been really hot and the course was really dusty. The format was we were all lined up at the start gate and then Sir Ian and his fellow cricketers would come and start the walk from in front of us. We started and Sir Ian and Co, went off at a great pace and left us all blinded in a cloud of dust coughing and spluttering. After the event Sir Ian signed all our tee shirts and picnicked and chatted with his family and us. Happy Days. I really agree that physical and mental recovery is so tough and not appreciated by others.

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@Erica It wasn’t just Ian and the cricketers, but the young children who joined him that put me to shame.

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@Jane,
Have your friends and family were able to easily manage with your new normal after treatment?

@Erica and @Pisces56,
what would you recommend to help with physical and mental recovery after finding a new normal?

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Hi Josh, I think when I found a new normal I still needed help with my mental recovery, my mind was definitely whizzing round with fearful thoughts and feelings at that time. As for my physical recovery I needed a professional at the gym that knew my history and what exercise was best and achievable for me.

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@Erica,

It sounds like you needed someone who knew your history and someone you can trust during your exercises. Did it take awhile to get into the routine in the gym? Where you felt comfortable?

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I was given training on certain pieces of appropriate gym equipment. A long time later I stick to certain cardio equipment to strengthen my core, arms and legs. I prefer group classes like pilates and Zumba, so the gym equipment is a fill in or when I go to the gym before classes start if I am going out. Nearly all the instructors know me well and I would trust them all, but my 1-1 is one of my pilates instructors who has known me for 7 yrs. With pilates it is my osteoporosis in my back that is my main problem. On Sunday there were 3 ‘Jack the lads’ saying pilates is easy before the class and they were beside me and collapsing and moaning and groaning and I was determined to keep going no matter what!!

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