(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.

@TwoBigNoisyBoys I had cancer five years ago and I found the chemo by far and away the hardest part, it made me tired and depressed and anxious. You've had a lot of chemo and it must be taking it's toll on your mood.
I am changed by cancer, I do get anxious and a bit obsessive, I've developed strange little aversions but I didn't have any councilling so never got the chance to process it properly, I think time and a lot of talking will help you
It's really hard waiting and hoping and being afraid but if/when you finally get your 5 year sign off I promise you it will be a happy, happy day.
I

Hi @TwoBigNoisyBoys sorry to hear of your diagnosis. I am 2 years on from breast cancer. The diagnosis and treatment were hardest. The shock, fear, sadness, all sorts of emotions and some people let me down. But others rose to the challenge. I
I'm pretty cynical generally (decades working in child protection implanted that) and accepted it as bad luck that could happen to anyone. Life is hard, we can't expect an easy ride. I desperately needed therapy to deal with it and other issues that had an impact. I had a long wait for the clinical psychology department to see me but it's been worth it.
At the beginning I had terrible trouble thinking it was my fault. I worked through that.
It has affected my energy levels more than anything. Psychologically I feel OK, stronger now and accepting that none of us knows what's round the corner and that whatever is there, I'll deal with it. Covid didn't worry me, I'd been through hell already (a few other issues as well as the cancer)
I had counselling and support from our local cancer centre, I'd recommend you see if you have anything locally while you wait for the nhs therapy.
Sending you love and best wishes

I'm so sorry to hear of all the diagnoses on this thread and wish every one of you a speedy recovery.

I had cervical cancer 2 years ago, just at the start of the first UK lockdown. I was Stage 1, so I had a hysterectomy. Recovered from that reasonably well just in time to receive a second cancer diagnosis that summer (the original cancer had spread), resulting in 6 weeks of chemoradio.

I found the treatment difficult, especially chemoradio, but I have to say that I've basically gone back to how I was before. I'm a bit physically different, but generally on a day to at basis I just forget it ever happened.

Everyone is different though and you shouldn't feel guilty or bad about it if it affects you more than you would like. It's a very traumatic thing and you just have to cope with it as best you can. X

Sounds really hard. It doesn’t seem like you’re not coping with it at all! Surely crying every day is normal - if being normal means anything. Maybe expected is a better word.

I have ovarian cancer. This does not generally have a good outcome.
I live from blood test to blood test. If I keep busy I can forget about it for a few hours but the worst time is in the evenings. I live alone and have coped with everything on my own.
It has changed me in that I stopped worrying about everything else, and try and do things that I would have been scared to do in the past.
Keeping your mind busy is the key

Just realised I posted on this thread in January, sorry

Hi OP. My experience is not my own, but my Mums. She was diagnosed with breast cancer last year, her treatment was a bit different to yours - she had 2 ops, chemo then radiotherapy and will have infusions every few months for a few years.

My mum is a person who doesn't really 'believe' in depression (for want of a better word). She is very much someone who just gets on with things but I have never seen her so down as when she was having treatment. She didn't want to do anything or be anywhere. She didn't even enjoy being with her grandchildren, she said she couldn't be bothered to do anything. She was so so low, it was hard to hear. We speak every day about anything and everything but she just didn't have anything to say to me in that period. I guess she felt similar to you but as her daughter she didn't want to worry me.

She has not long finished chemo, and she's ok now. I'm sure she still worries (she is a worrier anyway!) but the general lowness has gone. I think it's ok though, to allow yourself to feel what you feel. I think accepting that is a big part of moving on from it. It is completely normal to feel scared and worried, surely? It won't last forever and one day you will look back on this time in a different light. Allow yourself to put upon the people supporting you - that's what they are there for and I bet they want to be there for you. Like a PP says they will find their own support. Sending so much love

Sorry to hear about your diagnoses op, are you still on track for surgery in May?

My Mum had breast cancer followed by a mastectomy and treatment, she was very scared, low and tearful throughout it and for quite a while afterwards.
That was ten years ago and although her mind does go straight to cancer if she gets a new pain somewhere it's not all consuming now and she lives the majority of her life not thinking about her health at all.

I had bone cancer in my teens and am now 54. It was of course a very difficult time and treatments have changed a lot since then. I was as selfish as any other teenager and remember even having my chemo schedule altered to attend a party!

I have been left with long term problems but there was a very long period of life when everything was ok. However I don't think about it all the time nowadays. It's just part of my story if you like. I'm used to advocating for myself, being aware of my health and my needs and having the big heavy file when I do go to hospital. It's perhaps left me a little unsympathetic in some circumstances but also I like to think it's made me a better person in others.

So sad to read all of these stories. Cancer is terrible and has affected everyone in different ways.
I'm now 12 years post treatment and all is going well. I had surgery and chemo for breast cancer. At the time it was rough, the treatment made me feel sick and tired. Once it was over I had 2 months of work and then a phased return working only a few hours a day.
Since then I've returned to what I would call 'normal' My energy levels are pretty good for someone of 57. I cycle, swim and dance. During lockdown when all the pools were closed I would cycle 10 miles to swim in a river. I'm now used to swimming outside in all weathers and have swum all winter outside (never more than 5 mins at a time to avoid hypothermia)
At first I was having regular check-ups at the hospital but these have now stopped. I never had any anxiety or worry about the cancer returning. I just want to enjoy life as much as possible and concentrate on getting on with things instead.
It's understandable that you're worried now but things can get better. The counselling should help.
Best wishes to you.

I had cancer 10 years ago.
It took me nearly 3 years to get a diagnosis as Drs kept saying it was "my age" "that time of life"
Treatment took a year.
Of course it changes you - you look death in the face and have to acknowledge your time might be over far earlier than you thought it would be.
I do things and don't put them off (except in the last 2 years) I say what I think to family & friends (I want them to know what they mean to me) I take pleasure in the everyday or the minor things.

There was a point when just walking into the hospital make me anxious & emotional. There are decisions I made that I regret with hindsight but I'm still here & will be for some time I hope.

I'm sorry, I don't have cancer but I found out I have a rare degenerative condition, controlled by meds, out of the blue.

Google After The Treatment What Then. It was a talk by a doctor working with cancer patients based on his experiences. It resonated a lot personally and you may find it cathartic too.

On your last point, truthfully it does get absorbed into your experiences however it can take time. I believe five years for me. I can still sometimes be triggered, I suspect that is more 'me' plus an element of ptsd. I mean the worst thing that could have happened, happened, right, so it could again, and shit really we are all on borrowed time, and am I really making the best of my life then...but actually you know there is no need to do anything, just to sit in the sun with a coffee or chat casually with a friend is what it's really about. Sorry waffling. to you.

@TwoBigNoisyBoys I am recently clear of breast cancer. I had 6 chemos and a diep flap reconstruction op.

During the process I was very low. I was obsessed with what the outcome would be for me and I had dreadful anxiety. The chemo process was hard and I felt totally miserable like the cloud would never lift. I longed for a day when cancer wasn't the first thing I thought about when I woke up. It was constant.

Within a few months that has totally changed. Hours go by without me thinking about. And I don't worry like I used to. I am slowly starting to trust that my feet are on the ground and I'm still here. It does happen it just takes time.

Be kind to yourself and feel the feelings. Let the emotion out when it comes and let it go. Soon enough this will all be behind you.

You’re all so kind to reply to me, thank you so much. I’m going to read through properly, as I haven’t had a chance yet, but thank you all xx

Hello!

I had stage 3 pancreatic cancer 5 years ago. I was 28, my baby was 3 weeks old and my son was one. I had 22 rounds of chemo and one of the biggest surgeries the human body can endure, followed by a massive upper GI bleed that nearly saw me off. But here I am, still standing.

I suffer with regular bouts of pancreatitis since but I found the mental aspect of it all horrendous. I suffered a nervous breakdown last year and it was incredibly, incredibly difficult. I still have my moments now where I descend into sheer panic and small things like a freckle can make me think that I have something wrong with me. However, it's not as bad as it once was.

The best thing I can recommend is cancer counselling, I wish I'd have done it sooner than I did.

Stay busy but allow yourself time to recuperate and don't feel obliged to do anything that you don't want to.

The old cliche is very true here - time heals everything. As time goes on, it gets easier but I do make a conscious daily effort to help my mental health - you will learn what things you need to do as time goes on but I meditate, do yoga, watch things I like - small things that all contribute to me feeling better overall.

I am different - there is no debate in that. I am not the person I was and sometimes I miss her, but ultimately, I am a stronger person than I was. I tell people I've been lucky to gain a perspective on life that most people don't get until they're in their 60s and have hindsight on the back of illness.

I trimmed a lot of fat in terms of people who aren't a positive influence in my life, too.

Keep on keeping on, I promise it gets easier ❤️

Hi. Found a breast lump just after lockdown 1 started. Mastectomy and lymph node removal (22, 19 were clear) 6 weeks later, 18 weeks of chemotherapy, 15 sessions of radio. Daily tablets, 4 weekly implants and 6 monthly infusion.

Every new pain I worry. Every scan terrifies me. Currently waiting for max fax as I had toothache. Apparently there's a 15% chance my jaw is necrotizing. Trying to convince myself it's just toothache.

BUT I'm still here. My kids still have a parent and my mum hasn't had to bury her daughter. That's what I try to concentrate on. Sometimes it works, sometimes not. I don't know what the answer is. I'm happy to tell people about it if they ask, but not sure I want counselling. Thinking of trying hypnotherapy to address the panic. Exercise helps, not only to help my body to recover, but lets me be in control of my body to some extent. I didn't even consider I could get ill before, now I do.

Physically I'm awaiting a delayed diep flap reconstruction, I can feel my scar all the time. That's crap. Perhaps my head will be in a better place once I look more normal. I resent that I've lost a breast, will never have one which feels normal again (oh, and I lost my long hair which I'd had all my life).

I think the long term impacts are quite individual, as to an extent are the short term ones. I've had cancer three times.

Short term, my treatment was time consuming and I felt that I had little life out side my treatment.

Long term I determined that I was going to live my life to the beat of my drum, not other peoples. Since the age of three I've been in either education or employment. And I had a child who, of course, took precedence over just about everything for 18 years. So someone or something always took precedent.

After being diagnosed with lung cancer, and then surviving it, I made my decision. I was 59 so I retired, 12 years later I'm still living and enjoying this life that was given to me (except for fucking covid lock downs, of course). With her agreement I signed my house over to my daughter who now takes on responsibility for organising repairs ect. I have eight weeks a year, covid willing, in another country, I eat out with various friends as often as I can. It's grand.

But, for example, a very dear friend who has cancer twice, suffers quite badly with depression and health anxiety.

One of the things that annoys me, is that medical professionals don't always appreciate why I get anxious when I have routine tests and such like. The only way I can describe the feeling is that my body, apparently independently of my mind, goes into flight or fight mode and I have this battle between mind and body. My mind saying calm down it's just a blood test, my body saying run away, don't go to that appointment.

Good luck opening poster, you've got a good prognosis. A friend once told me to choose a place and a time and allow myself to worry, outside of that place and time, to tell the worry to go away, it's wasn't the time of the place. It worked for me.

I've not had a cancer diagnosis myself but have worked with people affected by cancer for many years. The online forums on the Macmillan site are good for talking to people in a similar situation.
Hope the treatment all goes well for you.

I am nearly 5 year post diagnosis and can’t believe that I am still here, I thought I would die. I do still live in fear of it coming back, not for myself but because I don’t want my children’s lives being ruined if I die. But I have a wonderful life, apart from this fear I don’t sweat the small stuff at all and have done fantastic things since my treatment finished - taken the kids on an airplane, left my previous underpaid and stressed job and got a nice new one, have done up the house. It’s definitely made me embrace things but without being evangelical about it. I do a hate anything pink though! Nothing about my experience was lovely and pink!!!

Ps I did have counselling sessions, one with a female psychiatrist about my age at the (NHS) hospital shortly after my treatment finished which involved me just sobbing from the shock of it all, and then some further free counselling at a local charity with a bloke who looked like High Grant. Randomly, the second batch was more helpful because he didn’t try to make me feel better and acknowledged how shit it had all been and how tough it must be to have these feelings - -and that helped a lot!

I think the chemo stage was the worse as I felt so unwell and so guilty that I couldn’t be a mum to my children. I had to rely on other people and felt like a victim, someone that people would pity. It was all in my head but I felt furious that all the successes that I achieved and hard work I had done in my life were wiped out and now I was just a cancer patient. My mum had to bathe me after my surgery because I couldn’t move my arm, I felt like I had regressed. I couldn’t get around that. I am also a planner, a fully engaged mum, work in a professional job and exercise regularly and all that stopped in an instance. Once the treatment finished, it all did come back slowly and the terrors faded somewhat. I started running again (slowly), my hair grew back to half way down my back (I’d had the cold cap), I went back to work, I did lovely things with my kids and although it is a cliche I do make the most of things now because I feel well and healthy and I’ll never take that for granted again. So that was a positive and a gift from the nightmare.

I think you are dealing with the absolute shock of realising we are not immortal. I mean everyone who has these diagnoses already knew that in theory, but it takes one of these terrible diagnoses to actually really understand it properly. So I don't think people are ever the same. It's like a big revelation that you can't unknow. Having stared the worst outcome in the face, you can't ever forget. I guess its what you do with that knowledge that defines you. But in the end it's a universal experience, though I'm very sorry that you are going through it now.

Good morning everyone. I just wanted to thank you all so much again for all your kind replies, sorry it's taken so long for me to get back to the thread (I sometimes find it all a bit overwhelming). I started my counselling this week, and I'm really hopeful that it will help; the counsellor was lovely and 'got' what I meant straight away, which I was really pleased about. We discussed my fears about never being 'TwoNoisy' again, and she agreed with me, and said I would probably never feel as I used to, but that the new 'TwoNoisy' could have a great life, and asked how/who I would like her to be? I found this a really interesting question, as it put it back to me, and made me feel as though I have some control over this, rather than it just being something that's happening to me...does that make sense?

Someone else spoke to me about the possibility of post traumatic growth, not just post-traumatic stress, so this is something I am trying to focus on. I find some days so much easier than others, and when I'm in that fearful place, it's so hard to stop the negative thoughts from spiralling away out of control. Today seems like a good day so far (I haven't cried yet!) so I'll take that!

Thank you all again xx

@KimWexlersPonyTail that's so refreshing to hear! I'm so glad you managed to get back to feeling normal.

@Daleksatemyshed it really is taking its toll, such a long treatment plan. I don't want to wish my life away, but that sounds like it will be a great day!

@rumred it's great to hear that the therapy worked for you, I'm so glad it was beneficial. I'm really hopeful that the Tenovus counselling will help me, and I now have an appointment for a clinical psychologist triage assessment next month.

@HP79 I'm so glad to hear you feel you're back to yourself now, despite finding your treatment so hard, it gives me such hope. I hope you are in good health now.

@LittleSnakes you're absolutely right. Mind you, I can't even remember 'normal' now!

@thereisonlyoneofme I'm so sorry to hear about your diagnosis. I agree, keeping your mind busy is helpful, it's just when the thoughts come back and smack you in the guts...it's bloody hard, isn't it? Sending you love x

@ItsTheTreasure thank you for sharing your mum's story, I'm so glad to hear she is ok now. I can completely identify with not being able to find joy in anything, I feel very resentful that cancer has taken that away from me, but I am hopeful it will return, and stories like your mum's give me hope. Thank you x

@SunflowerSmith, yes, so far still on track for surgery mid-May. Fingers crossed nothing stops that. So glad to hear your mum made a good recovery xx

@Mydogsnotfat wow, what a thing to go through as a teen! I'm so glad you recovered. I agree, I know one day this will just be part of 'my story, I just can't wait until I feel that way, rather than it being all-consuming as it is at the moment.

@PuddleglumtheMarshWiggle so lovely to read how your life is now. , You're an inspiration, and your story gives me hope x

@StripeyDeckchair that sounds terrible, how awful, taking so long to get that diagnosis., But that's exactly it...staring at your own mortality is so frightening. I want to do as you do, and do things more for the moment, tell people what they mean to me, etc, but it's not something I feel I can do at the moment, I just get so emotional. Hopefully, that will ease.

@MistySkiesAfterRain you're not waffling at all. I just wanted to thank you so much for recommending that talk. I cried my way through it, but it's absolutely brilliant. I have also asked a couple of my nearest and dearest to read it, as it's so insightful to how I'm feeling but unable to verbalise. Thank you so much x

@FelicityFidget thank you so. Again, stories like yours give me so much hope, thank you so much for sharing x

I will return later on to reply to all of you who I havent yet, I have to leave now as I have an appointment.

Have just been released from hospital In London after removal of thyroid, lymph nodes, full neck resection. Have it in throat and bowel too. This was found incidentally On a pet when they were looking to treat bowel.
Have radiation treatment booked next as an inpatient.
Have found it all very traumatic and have been really teary. I honestly feel brutalised and not helped by people staring.... it's very Texas chainsaw massacre.
I know I have to get on with it but I feel very deflated and low.