(Potential TW) Can I please ask how cancer changed you…

[TwoBigNoisyBoys]

…and did you ever get back to ‘normal’?

I have breast cancer, for which I’m currently undergoing chemo (12 weeks of one regime, followed by a further 12 weeks of a different regime, then surgery scheduled for mid-May providing covid doesn’t throw a spanner in the works and delay my treatment). I am very lucky; I’m advised my cancer has been caught very early (I’m stage one, grade 3) and they’re aiming to treat and hopefully cure me. Which is wonderful, obviously.

But my question is, if you (or someone you know) experienced cancer, did you ever go back to feeling ‘normal’ again? After treatment? Or even during? I have had heightened anxiety levels since diagnosis and although this varies, (good days and bad) I seem to be half a sentence away from tears all the time. I’ve realised I clearly suffer from health anxiety and am taking steps in addressing this, but I was wondering if this is going to be my life now, a constantly heightened state of fear and anxious feelings? Will I ever feel ‘normal’ again? Today is a particularly rough day, I usually ‘crash’ 2 days after chemo and my picc line is very uncomfortable; it’s all just at the forefront of my mind today. I try so hard to remain positive and upbeat, but god it’s hard sometimes 😕

If anyone would like to share their experiences I would be so grateful. TIA.

Firstly, I'm so sorry you're going through this, but so glad to hear you've got a treatment plan and good prognosis. My experience may not be helpful, as Dh has a brain tumour - but I think the life changing elements are universal.

I think the initial shock of diagnosis, followed by intrusive treatment (in terms of impeding on all parts of your life, being immonucompromised, tiredness, travel - and that's if you're lucky with side effects!) - it wrong foots you, it takes time to wrap your head around, dh has been diagnosed with a glioblastoma which needed surgery quickly too, altogether, I think the first 6-8 weeks spontaneous crying was pretty normal for both of us.

DH has finished first cycle chemo, and 12 weeks of radio, and is getting his strength back by inches, and is much more like his former self (humour and a rich sense of irony) but I do think this is one of those life events which once you've been through, you are forever changed by. Not necessarily in a bad way, but you and your relationships are all tested and change.

Have you spoken to any professionals for support?Ruth strauss foundation were incredibly helpful, Macmillan were great when all I could do was croak out a few words and could barely say the word cancer.

@Timeforabiscuit thank you so much for your reply and I’m so sorry you and your husband are going through this. It sounds like his treatment is going well, I’m so pleased.

It’s a funny thing isn’t it, some days I feel alright and then others I just feel like I’m drowning in it all.

I’m getting support through a specialist mindfulness class, where we will also focus on CBT to help manage emotions. I was having counselling but unfortunately the counsellor has left their position and so now a new one needs to be found and put in post, so it will be a while yet before that resumes.

I just wonder if I’ll always feel like this, this heightened anxiety, all the time in the future, everyone I know with real life experience of cancer says it changes you forever. I have always been a really positive person and this has really knocked me for six. I do try to keep positive but I wonder if it changes people in a ‘negative’ way (if that makes sense) or if people experience post traumatic growth too?

I hope your husband continues to do well with his treatment, thank you again for replying xx

Hopeful bump for anyone else’s stories?

So I had breast cancer 5 years ago, chemo, rads and lumpectomy, same Grade/stage as you.
Mentally I struggled with it and in all honesty I still do, but to a lesser extent.

In the beginning I had terrible moments of “I am going to die” and even now I still have them.

The fear will never go, it will reduce but it will always be there. Cancer gave me health anxiety that frankly I did not have previously.

However, how you deal with that anxiety will change.

I have learned to own my fear and ride with it. I don’t like to read articles about cancer, but I make myself, likewise when I get the voice in my head that tells me I’m going to die I allow myself that fear, but only for a couple of minutes and then I make myself do something else. For the first couple of years I would allow it to consume me and I’d start googling and be verging on a panic attack, but gradually that has subsided.

I had cancer counselling. No on can give you the magic pill that makes you not be scared but counselling gave me a place to vent my fear and fury over having cancer in the first place, and air my anger over those who didn’t have cancer but who were full of advice “it’s only hair, it will grow back” being one.

I guess, what I’m saying, is for me cancer has changed me, I never became that person who seized the day and parachuted, I just wanted to live and not have it happen again.

You won’t forget having it ever, it might go to the back of your mind, but it will always be on your mind x

I had a blood cancer a few years ago. Like you, it was caught early, but it was a very aggressive type.
I had a tonsillectomy which led to the diagnosis , followed by intensive inpatient chemo, followed by radiotherapy.
The treatment was so very intense and non-stop, I think I just got on with it. After it was all over though, I crashed. I couldn’t eat, barely slept, close to tears , no physical strength. It was all encompassing. I panicked at anything that could be a symptom, looked forward to check ups and blood tests for reassurance,
Gradually though, it got better. My GP recommended some vitamin supplements and my haematologist some other drugs, and I was able to get better. My appetite returned and my body recovered. My hair grew back.
I am now in remission ( 2 years and counting) and I think I have stopped looking over my shoulder. Covid has been tough as I have been classed as CEV.
I tried a local support group but it wasn’t for me. But I have good friends and family and this experience taught me just how great they were.

So sorry you are going through it. It totally sucks. But for many of us, it does get better, although it is life changing, 💐

I have just finished treatment for breast cancer. I was in high anxiety from the beginning which gradually decreased as treatment progressed. I had surgery followed by radiotherapy. I had stage 2 got ade 2 hormone positive. It hadn’t spread to lymph nodes and my oncotype score was as low so chemo wasn’t going to give any advantage.
The biggest lift is as post surgery when I got my oncotype score. From then I have felt fairly back to normal. I have realised that there is no point worrying because I did nothing I did caused cancer it was just bad luck. Nothing I do going forward is going to stop further cancer, although the tablets I take to block oestrogen will hopefully give some protection.
No one knows if they are going to get cancer. In fact we are very much in the dark as to what diseases we will suffer in the future.
Breast cancer is a common cancer that is, for the majority, treatable even at later stages. Many women live for years with palliative treatment. Just as many people live for years with heart disease.
A small percentage will not survive with either breast cancer or heart disease, but we have to accept this part of life.

Sorry lots of typos hope it makes sense

Sorry that probably sounded very negative, but it does change you. Fear is hard to live with.

Essentially I’m the same person I ever was, but I have dark thought that I never did before.

Pre cancer I was always healthy and very mentally strong, but I found that I couldn’t cope with cancer, I just couldn’t.
I cried at every chemo and tbh I’ve never got over the shock that it happened to me I couldn’t believe my body had let me down like that.

Just to add I was worried that I would not be able to shake the intense anxiety you get when your mind wanders back to your cancer before treatment starts. I have fleeting morbid thoughts but no adrenaline rush accompanying them.
I have no intention of becoming a born again charity flag waiver. I’m just going to carry on.

So I had cervical cancer back in 2005!

I’m still here, did not need radiotherapy thankfully, had a radical hysterectomy which was a huge thing as our youngest was only 15 months and I didn’t know if your family is complete.

It was a long time ago, I was emotionally affected by it for a good few years. I still remember the absolute fear before my MRI results that I might not be here to see my children grow up. They are now essentially grown so that worry is no longer there the same.

I do still have health apprehension about getting cancer again and worry more than I would otherwise about that I think but it doesn’t impact my life on a daily basis.

I hope your treatment goes well💐 Take any support offered to you. I declined support as I felt it was ‘just surgery’ and I continued with that attitude for some time which really impacted my recovery because it was a big deal, I was only early 30’s and my dses were very young and I had cancer!

Hi Noisy, I'm five years out from stage 3, grade 3 BC. I'm pretty much back to normal mentally but I'd say it's changed me in so much as I now value time spent with my family, experiences etc a lot more than I did. I'm more 'in the moment' than I ever was before. It also helps me to put work stress and other nonsense into perspective a bit more.

You're still very much in the thick of your treatment and it's natural that you would spend time thinking about what your life's going to be like after that, but I would say try not to overthink it too much. It sounds like you're doing all the right things in terms of counselling etc, and focusing on making yourself feel as well as you can through these tough weeks and months. But how you feel now isn't necessarily how you'll feel once you're through the other side of it, and to an extent you are going to have to see how it goes. But one thing is for sure: however you feel is valid, ignore any pressure to feel positive and just go with it. A really shitty thing has happened to you and your family, and it's ok to feel sad, angry, frightened, whatever. I got mightily sick of people without cancer telling me to think positive. Now my treatment is behind me I feel positive, but it's taken a while and I certainly didn't feel like this right in the middle of treatment.

It's hard. I had a backache last may. It got worse.. with Covid I never saw a dr. Just more and
More pain killers.. eventually after an ultrasound i for gall bladder etc, I had a ct scan , got called in by the consultant, who said, you have a cancerous tumour in your spine which has caused your vertebrae to crack, you need to be in hospital by 8am tomorrow. I'm a single mum wiith 2 kids, and just lost my rock, my mum to a sudden brain haemorrhage. Spent the Summer holidays in hospital. Following major surgery to rebuild my back I'm now going through the rest of the treatment. Yes, sorry, apparently this spread from breast cancer - I'm 46 too young for mammograms, plus the tumour too small to find. I guess I'm still in the middle of it, so living day to day, I understand the worry, I just know I have
To take each hour, day, month for what it is. It's given me the reality of living. ( along with the death of my beloved mum). Sending
You love and strength xxx

I was diagnosed in 2011.
Been all clear for several years now.

It did change my outlook, but actually in a positive way.
It made me realise that could have 'been it'.

I was always the sort of person doing things for other people, and finding it very difficult to say no when people asked me to take on voluntary roles. I had the sort of "well I have to do it as there is no-one else" mindset, and it made me realise that I wasn't so vital after all, and has made me much better at setting some personal boundaries and turning down requests to take on new things.
It means I do less because I feel I "ought to" and I spend more time doing things just because "I want to". I mean, I do still volunteer, but I also sometimes just sit and MN watch TV or have a lie in or even an afternoon nap if I feel like it. I worry less about what I "ought" to be doing, and I value my life more.

Of course, some of this might be because I am 10 years older.... my dc are 10 yrs older...... I am now post menopausal..... etc etc - it is difficult to separate out "just" the cancer, from everything else that affects your life.

It does mean that I am far more likely to get things checked at the Drs that I would have done before, but my Drs are absolutely marvellous and have never once made me feel I shouldn't have called them.

Thank you all so much for your kind replies…especially on such an emotive subject. Thank you for sharing your stories and advice, I’m so sorry that you’ve all been through this. It’s utterly rubbish isn’t it, so I really appreciate you all taking the time to answer and advise.

I guess that while I’m in the thick of treatment it will be hard to look forward and imagine anything other than this constant heightened anxiety. It’s reassuring to hear that this will (hopefully) ease over time. I guess the old TwoNoisy had gone forever then. I think I’m grieving for my old life and angry/upset that this has happened to me. I’m a planner by nature, and I can’t plan anything or feel like I can organise things to look forward to, I’m just being swept along at the moment. I’m so, so grateful for the amazing treatment I’m receiving, but at the same time feel so fed up that I need the treatment, does that make sense?

Thank you all so much xx

@Redhead37 I’m so sorry to read what you’re going through. Sending you all the good wishes in the world for your ongoing treatment x

I have breast cancer in both breasts, different types. I am also going through chemo at the moment and feel so crap. I can't wait to feel better, hopefully after the surgery & radiation.

I’m more than 5 years post BC and the daily anxiety has definitely dissipated although I can have moments of fear still.

I’ve also had numerous family bereavements during that time, so hard to say which had the stronger effect; but my brain has sort of been able to make peace with the fact that I will die one day, everyone does and we never know when it is coming. But what we can do is make sure we are living a life we get joy from (not every minute of every day, but overall). I have made some changes to daily life and my attitude to certain things so that my life is less stressful and more enjoyable than before bc.

It taught me to just let go of trivial stuff and save my energy for what really matters to me. Bizarrely I have selfishly really struggled with covid closing down my world when I want to seize life and get on with the good stuff - simple adventures, travelling, seeing the people I care about. I feel BC already cheated me out of some of “my” time and now covid has done the same.

I have terminal cancer. I was diagnosed 2 years ago, and every day I am still here when I should be grateful Im desperately worrying about the eventual outcome.

I dont have family, so cannot immerse myself in them, so I try to
plan something to look forward to, like a day in London, meal out,
trip to the coast etc. Covid put the mockers on most of it but
hopefully things are getting better.
I am a glass half empty person, glass half full people are better sited to cope I think.

@thereisonlyoneofme I’m so sorry to read your post. I hope you’re getting some support form friends or professionals/organisations? xx

Thank you again to everyone that has replied and shared your story, it’s really appreciated x

Just revisiting this thread and re-reading all the kind replies I got.

I’m struggling again at the moment, I seem to find it harder the more poorly I am, and my new chemo regime absolutely knocks me for six. I had the third round last Thursday and have only just started feeling vaguely human again! I have been having chemo now for about 22 weeks. I have one more round to go, then will be having surgery around mid May, then radiotherapy and possibly 6 months of oral chemo. My treatment is apparently going to plan, which is great, obviously and I’m very grateful…

But my goodness I’m suffering mentally! I really hoped I’d have a better ‘grip’ on it by now, but I think I’ve cried every day for weeks now. I have been referred for counselling by Tenovus, and I have a separate clinical psychology (for cancer) triage assessment appointment that’s finally come through, and about to be booked. I’m so hoping that one of these services helps. I can’t bear the thought that I’ll be like this for the rest of my life 😕 and even though most of the replies I received before reassured me that I wouldn’t, I just feel so low and fearful. I really thought I’d be the type to cope ‘better’ than I am. I hate what this disease has done to me, hate the person I’ve become. Hate what it’s done to my friends and family and my relationship.

Don’t know why I’m posting really. I guess I’m hoping that the more positive stories I hear, the more reassured I’ll be that this won’t last forever.

Hopeful bump for the morning crowd…

Oh sweetie - I don’t believe there’s a “better” or a “worse” way to cope with cancer. There’s only your way. And it’s not necessarily a static way. How you are today isn’t necessarily how you’ll be tomorrow or next week or next month.

I’ve not had cancer but both of my sisters have. One was diagnosed far too late to have any chance, the other is two years post a very similar-sounding regime to yours for a very aggressive BC. From a COVID-imposed distance, she seemed to cope amazingly well. Whether she did or not, I can’t say for sure but I know I struggled. I’m a pretty positive person but on occasion I found the fear so overwhelming I actually found it hard to breathe. I know, god, how I know, I can’t compare my very fortunate situation to hers or yours but I did find it helpful, when things got overwhelming, to focus on nothing more than that next difficult breath.

Take the counselling. Try not to worry about the effect your illness is having on your family and friends. To use an analogy you’ve perhaps seen before, you’re at the centre of the circle, they are your support and they must find their own. This doesn’t work as easily when you have kids, I know, but the principle is sound enough. (Have you accessed Maggie’s for support for your children? That might take some of the pressure off you and they really are excellent.)

I think my sister now lives far more in the moment than before. I know I do. Today is all any of us really know we have. Finding a way to make the most of that today is the key. I think you’ll get there. Finding the path, that right-for-you approach is just harder for some.

Massive massive luck and love for you. It might not feel it but you’re doing amazingly. You really are :-)

Thank you so much @FourFourthsDontCare. What a kind message. I think my fear is that I’m going to be ‘stuck’ here emotionally forever, and as each day is so hard, that thought fills me with dread…which makes it all worse…which increases my anxiety…which leads to spiralling thoughts…and so on.

I’m so sorry to hear about your sisters. Sending you love xx

Breast cancer with mastectomy. Worrying couple of months but never give it a thought now. Not really changed me apart from my boobs! Actually been though worse things than this. Wishing you all the best.