Anal cancer

For people affected by cancer of the anus to get together, ask questions, share experiences and support each other

Living with cancer and mentally dealing with it

Sraz
Posted by

Does the mental side of dealing with cancer get better as time goes on. The enormity of having this cancer keeps hitting me. One minute I feel like I can deal with it and the next minute it's like having a kick in the stomach. At this moment in time it's the mental effects that are getting to me. How long is it before you learn to live with it? if ever. 

Thanks for reading this. I do love reading what you all put on it does help.
Sharon
sandm
Posted by

Hi Sraz

I wish I could say that it did get better but side effects can remain with you. I do have god days but I still have a lot of pain from the treatment and some days I  fell scared that it is back. I feel anger that my bones break easily because of the treatment and I get scared that it might come back - those are the bad days but then there are the days with the grandchildren swimming of feeding the ducks days I would not have had without treatment and I feel blessed.

I have taken up the offer of counselling for cancer related issues and I hope it helps. All the best.

Sandm

carla1965
Posted by

Hi Sharon

Three years on and still having side effects in my thighs and hips.I swim which helps.I feel like I have arthritis in my little fingers and others things from treatment but I can live with them.i was ill with phlegmy cough for about 7 weeks and I was convinced that it was back so had an x Ray but all clear and I'm back to normal now .I'm here that's the main thing.as you get closer to scan results that makes us anxious again but having said all this it does get less.good luck with everything.

Sraz
Posted by

Hi Carla, glad to hear that your doing so well after 3 years. For the first time today in the last 4 weeks I've had a sense of calm come over me, it feels nice. I know it won't last but if I can have this calmness every now and then it will help.

What stage was your cancer?

Was hoping to start treatment on Tuesday but it now starting on the 24th. 

Keep in touch 

Sharon

carla1965
Posted by

I was stage 2,I drove myself everyday for treatment,still looked after my old dad,took him shopping etc,kids to school,life had to go on and I wanted things as normal as possible,craving my old life !! The last 3 days I could barely sit down so my cousin drove me.I met some lovely people,you see the same ones everyday as you are all there for the same reason so we'd have a laugh etc.you will get through this,we all deal with it in our own way,I was on morphine when finished as that's when you feel at your lowest ,I drove all the way to Cornwall from Hampshire because I could,maybe came off morphine too soon but it was fine lol.I've also had a colonoscopy which clear and a mammogram ,also clear so next is my 3 year scan on 27th then a long 2 week wait for results.!! Take care

Sraz
Posted by

Hi Carla, you are an inspiration and your right I need to try and get back to normality. 

Good luck with your result. 

Thank you 

Sharon

Flipbee
Posted by

Hi Sraz

from my experience the mental side is an emotional roller coaster and it does get better - fewer downs and not as deep - and more ups - yes I have the big C as a ticking time bomb - and I want to lead as normal and fulfilling a life as I can while I can.  I've been really lucky in that friend of mine is a clinical psychologist and she has been a huge support in helping me deal with the mental side....in particular using ACT (Acceptance and Commitment Therapy).   I returned to sport - sailing, sea swimming, running, cycling, skiing, hiking and travelling, including hiking in remote locations and wilderness camping).   Having great support - my husband and friends in particular (I don't have close family) who are living how I wanted to be living and doing what I wanted to be doing and joining in as much as I could has been really important for my mental health.  Yes there have been huge downs - and especially recently when I was re-diagnosed - metastasised to some lymph nodes.....before that I was hugely positive and sure that I was cured so wouldn't have to live with it....although the dark cancer cloud was always hovering in the distant background.   So it was a huge shock that has taken me a while to come to terms with - yes I have to live with it - and I keep hoping and looking for a miracle cure or something that will stop any progress.  

Sraz
Posted by

Hi flipbee, thank you for taking the time to write. I do think it is getting a little better, it's not on my mind constantly, but when it hits me again I struggle to try and calm my thoughts down. ACT sounds good I'll mention it to my GP.

I have 3 lymph nodes that have mastised on my aorta. My oncologist is going to zap them white radiotherapy and chemo at the same time. He knows of cases where this has been done before and patients are still disease free at 3 years. This is what I am focusing my thoughts on

I think your right, when I was first diagnosed I was told it was curable, then after pet scan that realised it had spread, however I think the cancer cloud is always with you no matter if your told it's cured.

I'm sorry to hear you've had your news but you sound such a strong and focused person I'm sure you will be able to get through this.

Take care

Sharon

Flipbee
Posted by

Hi Sharon

thanks so much for your response.  I'm really interested to know which of your lymph nodes are involved - mine are on or near aorta (retrocrural, paraaortic, presacral, retroperitoneal) and onco said couldn't be zapped with RT, Proton Beam/Arc or Nano knife because of potential damage to aorta.....so really interested to know your onco knows it has been done successfully before....appreciate lymph nodes might be different locations on aorta.  

thanks

Flipbee

Sraz
Posted by

I believe they are near the para aorta. He has said it's going to be intense and with a distinct possibility it is not going to work. 

I also have lymph nodes in my pelvic region along with the original tumer.

Have you already had treatment for your original tumer? How long ago was it and did you get through it ok? Was it 6 weeks radiotherapy and chemo?

Hope you don't mind me asking questions.

Sharon x

Nassau
Posted by

Hi Flipbe,

A huge WOW to you ---I would have loved to have done just half of the things that you do when I was fit! ;-) Go girl go --What an inspiration to us all xxx

Flipbee
Posted by

HI Sharon

I don't mind you asking questions at all - I welcome questions as I hope everyone welcomes questions from me - the more we can all learn the better........I was treated in 2013 for original tumour with the usual 6 wks chemo/RT - I had a pretty rough ride as at day 14 I ended up with the much feared neutropenia sepsis with high fever and was an in patient for 8days - still having the daily RT.  That really set me back.  Until that point I'd been keeping relatively active and I was very fit at the start of my treatment.  Another lady going through the same treatment, and 1 week ahead of me, at the same hospital had a much easier ride through....and kept relatively active.  I spoke later with my onco who said some people breeze through the treatment and others really struggle - I hope you are one of the ones who 'breeze' through.    I was re-diagnosed in March 2016 with metastasis to 4 lymph nodes in pelvice girdle which responded well to chemo treatment (April - Aug 2016) and then March 2017 PET scan showed they'd grown again and a new one in my neck :-( I'm now seeking any form of treatment that might help knock these back/slow down the progression.  Hope that helps.   Stay strong, Flipbee xx

Flipbee
Posted by

HI Sharon

re ACT - there is a good self-help book called ACTivate your life by Joe Oliver, Jon Hill and Eric Morris and also my Clinical Psychologist friend has just published a really useful and practical self-help book Get Your Life Back by Fiona Kennedy and David Pearson which has some really good exercises from a variety of therapies including ACT.

Good luck on your journey

Flipbee

Flipbee
Posted by

thanks Nassau, I'm just doing the things I love doing ..... sport and being outdoors in nature - and I've come to terms with not having quite the same high energy levels I used to have - though this can be more frustrating for my husband and friends who adapt their pace to suit mine ;-).   I've had to have quite a mindset shift on what I can realistically do.   Are you having treatment at the moment?  If not how fit would you realistically like to be? 

stay strong and fit

Flipbee

x

Nassau
Posted by

Thanks for your helpful reply....I have my first CT scan today....so am at the moment drinking loads of water!

Really interested in your article about NEUTROPENIA licking in....so sorry that you had to go through that as well! But I've just realised that I haven't pointed out to my doctors [new hospital to me as only just moved here] that I already have neutropenia! Not good standing for me I'm thinking! But thanks very much for pointing this out as I'm sure I wouldn't have found out until to late!

As you say we need to keep talking xxxx