Psychological Support After Treatment

Cervical cancer post treatment and side effects
1

 Hello Ladies,

When you have an illness like ours, there are some things we talk about easily to each other on a forum like this – our fear, our treatment path, physical effects. Others we are more coy about, such as the effect on our relationships and sex lives. One thing that is a recognised after effect of cancer treatment, referenced in all the literature, but which we don’t talk about much is feeling low or depressed after treatment.

This seems to hit just at the point when your medical team back away and all your friends and family are telling you how happy you must be that your initial treatment is over. That’s when the enormity of everything that you’ve been through can hit you.

Physically I think I’m doing ok, 4 months post op, a few niggling things but back to work 4 days a week and trying to find my ‘new normal’.  Now I don’t know if I’m depressed per se, but I do know I’m finding the emotional aftermath of all this much more difficult to deal with than I would like. I’m not sure how much of this is:

1. Hormone related (no HRT for me at the mo),

2. A bit of post traumatic stress (totally to be expected I reckon)

3. Stuff I’ve been managing for years which has floated to the surface because ofall this.

Whatever it all is, I decided I needed to get some help to navigate through all this in the hope that my ‘new normal’ might be better than my ‘old normal’. Besides, there’s nothing like the cancer experience to make you want to ditch things that might be holding you back and to make the most of all aspects of your life, is there?

I am very lucky that I live 10 miles from my regional cancer hospital and work a 15 minute drive away and that there’s a Maggie’s Centre* there – I probably wouldn’t have found out about it if it wasn’t where my Jo’s Trust Support Group meets. (*I know there are other charities and organisations that offer similar help.)

I saw that they offered various programmes so had a chat to the Maggie’s coordinator. She referred me for an assessment meeting with their staff psychologist. After an hour with her explaining what I wanted help with, she suggested three ways they could help:

1.       The ‘Where Now’ course – a 7 week programme of 3 hour group workshops which look at different aspects of getting back on track after treatment.

2.       A weekly one hour relaxation drop-in session

3.       One to one counselling

I am doing it all. It’s early days but although I feel a bit apprehensive about raking up difficult stuff, I already feel better, just knowing that I am being proactive and trying to get things sorted. So, the point of this post is not to expose my fragility to you all, but just to say that if you’re finding things tough, don’t suffer alone. There is help out there and it’s worth seeking it out.

I am hoping that I’ll look back on my experience of this disease as something that was a turning point in my life which left me as a better, happier person. Wouldn’t that be great?

xxx (Sorry for the extraordinary length of this post Embarassed)

2

Thanks so much for posting this Rosehip.

I’m crying on a daily basis. Anger is my main emotion, but it’s a cover up emotion. I feel so hopeless and frustrated that I’m not physically able to do much yet. I’m angry with the former me for not making more out of life, and as such feel enormous pressure to ‘fix everything’ in the 12 weeks I have off.

I need to get some proper help, but physically I can’t drive or tolerate being in public much yet.

I think the realisation that normality isn’t going to come knocking on the door is really hitting me and my partner now :confused:

Much love xxx

3

Hi there

it's been a while since I've been on, and a year since my treatment stopped and I was literally thrown back out into the big bad world. Family and friends being brilliant but a lot don't realise the after effects that we, whatever our treatment have to deal with. Once treatment stops people expect you to return to your formal self, your care team backs off and your left dealing with so much I don't know how we actually do begin functioning again but we do little by little. I describe it a bit like when a funeral is over and everyone leaves and you close your front door andturn to an empty house.

I sought counselling in June through my gp as there were not alot of services in my local area I got on well but have returned again to counselling as dealing with side effects, anxiety to name but a few was too much. There is much needed after care help and support lacking in my area so take what you can get as much as you need.  We all try our best to move forward but it's hard and thank God we all have jos to find understanding and comfort when we need it most.

I hope u find the help you need to build the new you up a bit, and find reassurance there are many of us in your shoes and what your feeling is justified and well"normal" for us jos girls.

Lots of love

Nic x

4

Hey Jo and Nic, thanks for responding.

So sorry to hear you are finding it so hard Jo - sounds like you're still in the initial shock of it all. I needed the first 12 weeks to heal and get my strength up before I was ready for any formal help, but I did get my blokey to drive me over to my local Jo's Support Group and I found that very helpful. Good to have a chance of scene with otherswho really understand.

In the meantime, I tried very hard to be kind to myself, but there were many times that the little devil on my shoulder whispered in my ear that I was being self indulgent and lazy for not doing more with the 'time off'. I told him to bog off- it wasn't time off - I was recovering from having a big chunk of my insides removed! We women are our own worst enemies sometimes, aren't we?

Let the dust pile up and try not to worry about it - I'm thinking maybe I'll book a cleaning comopany to come and give the house a spring clean. Trouble is I'd still need to tidy up first!

xxx

 

5

Hi Rosehip,

We are so lucky to have that on our doorstep I plan to do exactly the same as you I need to start getting things organised for when my son starts school in September and I have the time to go. Like you I want to be able to look back at all of this and see it is where I have turned my life around.  I have done one part on my own and have lost 2 stone in weight. I do still feel in my own world at times and that nobody really understands they expect you to be all happy as you received the all clear but it is so hard emotionally. Good luck with it x

6

I am 2 and a half years post treatment. I left work in January this year and finally had time to think about what had happened to me. I had chemo radiation...my Dad died during this and then my mum died of cancer the year after. I had a very full on job and so had never grieved for them or indeed for the 'old pre-cancer me'. I fell to bits and got myself counselling at the local hospice where I have had weekly sessions since. I too was diagnosed with PTSD and have been learning to come to terms with all the things that have happened in the last few years. I actually think it should be offered to people once they have finished treatment as we must all suffer from PTSD to some degree - though most of us ignore it and just get on with things. We all need time and space to get used to our 'new normal'! xxx

7

I totally agree I am also struggling to find the 'new me' and move on I am due to start a cognitive behave therapy course on tuesday  this was done through my gp and is not a cancer related course I have been on the waiting list for this since the beginning of jan. I also found there is not a lot in my area in means of support after treatment has finished x x 

8

First of all Rosehip thank you so much for your initial post & to all you other ladies who have replied also.
All your comments have really hit the nail on the head!
I am 6 weeks post chemo/rads/brachy,I have just had my 6 week follow up & my examination with my oncologist…she was really pleased & said she couldn’t see/feel anything! Although I was really pleased I still have to have my MRI & PET scans & see her again…
I too am now finding things really hard to deal with,it seems that most people now think ‘that’s it…all over…I’m fine now…back to normal’ etc etc. buts it’s just not like that is it?? It’s not so black & white?
I keep beating myself up if I’m still tired,not my normal self,not singing from the roof tops,not spring cleaning the house,not being constantly happy & smiling!! :frowning:
Not being the way I think I should be!
Truth is I don’t know who I am now…certainly not the old me or the old normal!
I go back to work on a phased return tues,which I think will be good for me,but I think I definetley need some help too!
I am going to ring my local cancer centre & sort this out tomorrow…you ladies have really helped!!
Thank you so much xx
K xx

9

Also…sorry I’m rabbiting on a bit now but I also feel weird that although my consultant was really positive I don’t want to celebrate…I’m too scared to jinx anything!
I keep reading people saying they’re ‘all clear’ etc etc I don’t think I will ever be able to say that cos I’m too scared!! :frowning:
I have read ladies saying that now their lives are now no longer on hold etc & that they are able to get on with things now…why don’t I feel like that? Xx

10

I am lucky enough to have coped OK emotionally, but a couple of weeks after I got my 3 month 'all clear' my husband fell into depression. If I'm honest I found it difficult to interest Macmillan or any other organisations I had had contact with in offering support to him. He has sought medical help directly now, but I am aware that if in the future I need further treatment it is going to be extremely difficult to deal with that and support him at the same time. His depression took me completely by surprise, I had expected my own positive attitudes to be mirrored by him. Oh well. Just another life challenge!

11

Hi Monkey, 

I just wanted to reassure you that you are not alone in feeling the way that you do. In fact, feeling like this after cancer is incredibly common. And why wouldn't it be? Cancer is a massive thing to happen to you and, like it says in the Macmillan advert, for many people it is the hardest and most awful thing to ever happen to them. I know what you mean about other people thinking you should be happy and on top of the world but frankly, they don't know what it's like to have cancer, so there is no way they can be expected to understand how you feel. It changes everything and it's ridiculous for anyone to expect you to just 'get back to normal'. Like you say, this experience has changed you, so there will be things about you that will be different now. It will take a while for you to catch up with yourself and you may find that some people find this hard to adjust to, and that's ok because sometimes that happens in life - things change. Try not to be so hard on yourself. It really sounds like you're judging yourself for not living up to the fantasised version of a post-cancer person you've got in your head. I don't reckon you deserve that judgement you know - I reckon you deserve a lot of love, kindness and acceptance, probably most of all from yourself. Be nice to yourself - you really really deserve it.

Reading positive posts from other people about how they feel their life is no longer on hold can be great and can be encouraging sometimes - in fact I think I may have written something a few weeks ago when I got the results from my six month check, because I hadn't realised how much I had been holding my breath until I got the results - but it can also have the effect of making you feel isolated if you're not feeling like that yourself. I did - and in many ways do - feel like that, but what you've got to bear in mind is that what you've read is a tiny snippet of someone's life and someone's emotions and doesn't mean they feel like that all of the time or a few days after they have written the post. You're not being fair on yourself by measuring yourself against those kinds of comments. The really important thing to remember though is that even if everyone else who has had cancer was skipping through fields singing "I'm so grateful to be alive", the fact that you don't feel like that IS OK!! You are you, and you feel however you feel - there is no way you 'should' feel - there is no right or wrong way to feel about cancer (or anything else!)! So when you ask, 'Why don't I feel like that?' I would say simply, because you're not them. And that's ok. 

I found that lots of people said to me, 'You're so lucky!' What they meant was that I was lucky not to be dead. Well, you know what, I like to aim a little bit higher in life than just not being dead! And no, I'm not lucky: I got cancer, that's not lucky - in fact, on the scale of luck, I'd say getting cancer is pretty securely in the 'bad luck' section of the luck scale! So the fact that you have survived cancer does not mean you should feel grateful. You are allowed to feel upset, depressed, angry, happy, frightened, vulnerable - however you feel is fine. 

The other thing that happens when you get cancer - and especially once treatment has finished - is that you tend to enter the grieving process. Even if you survive cancer, there is still an awful lot of loss involved and, as I've said in posts elsewhere, you can never go back to being the person who's never had cancer. Life is different now, so the old one has to be grieved for. This is difficult enough in itself but, if you have things in your past (most obviously, bereavements, but can also be other kinds of challenging events) which you haven't fully grieved for, they can come to the surface now because you've entered a similar state of emotional turmoil and uncertainty. So you'll find that you're not only grieving for the losses you've faced because of cancer, but also perhaps some leftover grief from an old bereavement or trauma that you've experienced. This can be really challenging so you need to make sure you're looking after yourself with lots of care and understanding. 

So, the conclusion? You are perfectly normal! There is nothing 'wrong' with you, you are not somehow emotionally inadequate because you can't take cancer in your stride like it's tonsilitis. Be kind and patient with yourself - you've been through the mill and you deserve gentleness and understanding. I hope the cancer centre were helpful and you feel that you are being offered the kind of help that you want. Unfortunately sometimes people really have to push for this kind of post-cancer help, so if you haven't had a successful phone call, don't give up - the help is out there. And of course, we are all here as well - one of the wonderful things about this forum is the lack of judgement - no one will judge you, so please don't hesitate to bring up anything you want to discuss. 

Much love, 

Annabel. x

12

Hi Ladies, so comforting reading all your posts. I am 7 months post treatment and the last month or 2 have been very glum. I am definitely not feeling my usual positive smily carefree self. I this is a combo..everything sinking in, being worn down from all treatments and post treatment issues, moving to a new country, new job and being away from my family and friends. I am also thinking it could be my HRT throwing a spanner in the works. I have made an appointment with a natropath to try and get my immune system and energy back as I think the fatigue is taking it's toll. My partner is great but can't understand why I feel glum..and to be honest it doesnt make sense to me so I dont expect him to understand it, but it definitely helps hearing that I'm not alone. I agree that being proactive can only do good and I have also started a meditation course with Deepak..he is an incredible man and it really makes you view life and happiness and health in a different way. I wish all you ladies luck and love and thanks once again for being my biggest supporter xxxx

13

You're definitely not on your own. To be honest, the point that you're at is SO common for everything to hit you. Lots of research has been done on this and it is very well documented that 3-6 months after the end of treatment/surgery (basically whenever what you have done ends) is a time when people who have had cancer are most likely to sink, in terms of mood and ability to cope. It's a very difficult time because it tends to be the point at which you have returned to work, attempted to get back to some sort of normality, people have stopped asking how you are and outward signs of treatment (such as hair loss or physical impairment) are less obvious than six months ago. It is at this point that everything hits you and the reality of what you've been through really starts to sink in and, it can be very hard. To be honest, the post-cancer stuff on its own would be hard enough but, as you say, having the added adjustments of new job and new country can make things more stressful for a while, even if they are positive things in themselves. You're not on your own and there are very good reasons why you feel as you do. Try not to put pressure on yourself to be a particular way - let yourself just 'be' for a while.

Take very special care. 

Love, Annabel. x

14

Thanks for your reply Annabel, it so comforting to hear Im 'normal' haha xo

15

Thought I'd just give a quick update on my progress with the psychological support from Maggie's.

I am finding the 'Where Now' programme very helpful. Each session starts with an hour of gentle pilates designed to increase mobility (excellent) followed by a couple of hours talking about various topics including exercise, diet, coping with stress. The quality of the sessions has been a bit variable, but its been great to get to know other people affected by cancer and as we are getting more comfortable with each other, we are finding that we have so many common experiences, despite our different situations.

The relaxation sessons I do are lovely - last week I had a very challenging weekend and was feeling very emotional and agitated.  After an hour of concenttrating on relaxing, I felt so much better and that feeling of wellbeing lasted all week long. I'm now trying to master doing the technique on my own.

The third part is the one to one counselling. I have found that quite difficult (and tiring) as we are unpacking some very personal and painful stuff but I still feel like I'm being proactive and moving forward, which is good.

A little way more to go, but I still say that looking for outside help and support with your emotional recovery is a good thing and I recommend it. Cool

Love to you all. xxx

16

Hi Rosehip, 

I'm so glad this is working out for you - that's brilliant! One-to-one counselling can be very hard work and pretty exhausting at times. It can be scary and challenging because, like you say, you are looking at stuff that is painful and difficult and can make you want to run a million miles away at times! You've done so well to even begin to do this though and that in itself shows tremendous strength of character. Stick with it - you'll get there - and as you say, it's great that you're doing the relaxation techniques alongside it to help you manage your anxieties on difficult days. 

Lots of love, Annabel. x

17

Hi there all...

Annabel thank you so much for your reply it was really helpful & also readinga everyone else's comments has really helped too xxxxx

18

Hi there all...

Annabel thank you so much for your reply it was really helpful & also readinga everyone else's comments has really helped too xxxxx

19

I'm so glad that it's helped. Big hugs. xxx