What is too much?

Hello B74

It is not too much and it is absolutely fine to express how you are feeling here. It is a safe place to speak about how you are feeling and there are people on here who will understand.

Having a diagnosis of cancer and knowing you need treatment is a worrying, stressful and unsettling time. There is no right or wrong way to feel but please do not feel alone with your thoughts. When I was first diagnosed I did feel a sort of numbness, like it was surreal and it was happening to someone else. I think in my case the worry and anxiety took place before I was diagnosed and before I knew what I was dealing with.

I get the feelings about needing to escape- it can seem so unfair and it would seem an "easier" option of just walking away and not dealing with it. Although you feel you need to present yourself and strong and positive to the rest of the world- do you really? and how does that help? If you did express how you are feeling- what is it that you are worried might happen? Just thoughts really, trying to understand to help.

Have you any one close to you that you can talk about how you are feeling? Sometimes it is hard to let anyone in and I sort of felt that I did not want to show my weaker side at the time, because if I did, I would not be able to cope with what I knew I needed to do. I had to really put all my focus on the cancer. I was really worried about the surgery and thought that if I did express how I felt it would become overwhelming. When I did speak to someone, the relief came quickly- just feeling able to express yourself can take away some of the fear.

Your CNS is there to support you and will be very used to people who are experiencing the roller coaster of emotions that a cancer diagnosis will bring, They are not there to judge you and if you are not coping they may be the best people to confide in. They really will be used to it and will not want you to be feeling that you need to put on an act that all is fine. 

I find personally that when I am worried about something I can keep it to myself for a while and it bubbles away under the surface until I can not stop it coming out. As the date for surgery comes closer you may feel it building up more and more. 

I remember that you are the lady who does not like to talk on the phone so I am not going to suggest you call your CNS or the Support Line- although if you did I think it would help but would you feel able to email your CNS? and mention you are struggling and maybe they would be able to speak with you at your Pre op. 

Another option would be to try the Macmillan on line chat feature. You can speak with one of the nurses almost like using messenger really. 

I do understand the feeling of being trapped. I remember getting my diagnosis, having the surgery and then unexpectedly being told I needed further treatment. Although I knew it was necessary, I felt very trapped at the time- sort of pushed into it. It felt like the next few months had been taken out of my control and my life would be a seemingly endless round of appointments. With cancer it can feel like your control is taken away and for me that led to feeling trapped by it. 

There is also some counselling available through Macmillan/Bupa if you feel it would help at some point.

I hope that Tuesday's pre op goes to plan but please do think about mentioning how you are feeling to your CNS- they really will be used to it and want to help. 

Jane

Hi B74, bless you - you seem to be putting a lot of pressure on yourself and I’m glad you felt able to share with us here, Two years ago I was in a similar position to you and I’d be happy to chat things through with you about what helped me. First of all, it’s okay to be anxious, to feel overwhelmed or to feel numb, even though it’s different things within a short space of time. For me the cancer experience felt like a roller coaster, ups and downs, twists and turns and an awful feeling of being out of control. The secret to coping for me was about learning to let the swirling thoughts settle, learning to deal with today rather than the what ifs, and using coping mechanisms to switch off at times, to give myself a break. And gradually I learned to cope with the ride. I was real with my husband about how I was feeling but didn’t overly lean on him for support as he had his own stuff to deal with over my illness and I encouraged him to play golf as usual and talk to his friends about how he was feeling. I was determined to cushion my adult children from a lot of the impact and presented myself to them as someone who was coping well. The reason I was able to do that was that I started talking to my CNS a couple of times a week since diagnosis, and to the Macmillan helpline at weekends. I would encourage you to try to do this, as it will help you to let out all the panic, muddle and mess in a safe environment, which will in turn help you to get yourself to a more balanced place in your mind. Keeping it all in won’t help. I’m imagining that you may be afraid to let it all out, out of fear, but facing our feelings head on is an important integral part of learning to cope. One other thing - I found that trying to be strong/positive is absolutely exhausting and puts far too much pressure on ourselves. I opted instead for being pragmatic - ie channeling my energies into getting done what needed to be done. And being pragmatic is what got me through the appointments, the waiting, the hysterectomy, and the treatment. I feel for you as i can tell you’re finding it difficult to be open about how you’re feeling, but it’s absolutely vital that you do try, as it will help you get through. I’d recommend talking to your CNS, the Macmillan helpline and possibly even the Maggie’s Centre at your hospital. Feel free to add me and private message me if you’d like to.

I am having the surgery at the bigger hospital about 25 miles away (as my local hospital does not have the capacity to remove/take biopsies of the lymph nodes, so I assume my CNS won't be there. 

I can't bear to say how I feel to anyone as I don't manage vulnerability 

B74, you could try starting by saying just that to your CNS or the Macmillan Support Line - that you need support but you’re finding it hard to talk about how you feel as you find it hard to cope with vulnerability. FWIW I also find it hard to cope with vulnerability as I’m a very self sufficient person and have been since my childhood when it was a matter of survival, as my home life was abusive and I didn’t feel safe. Macmillan staff (and that includes CNS) are used to dealing with people who feel like we do and will be able to offer support. 

Thank you marmiteFan59, that is my issue also, I have spent my life keeping myself "safe" by being self sufficient and not letting people "see" behind the shield; I have tried to challenge this  over the years, but have not done so successfully. The only person who has ever had a glimpse was my husband but, in the end, my issues around letting people in ended my marriage so I really am a lone wolf. I have my adult children and my grandson (who is two today) and I do have friends, but they have their own lives and I don't want them to know I am not coping in case I am not important enough for them to accept this and fear being let down. Better to show the strong me and try to cope alone than let people see me and still have to cope alone.

I understand that this can make things feel more difficult- but there will still be a CNS for you, whether it is your current one or one for while you are at the bigger hospital. I know that you have mentioned not liking to phone but would you feel able to pick up the phone for the Support Line and just say- " I am struggling, I posted on the forum and they suggested I call you but I find it very difficult to express my vulnerability to anyone"  Or even via online chat on here. They really will understand and will also be able to check if there is anything local to you that can offer support. You don't need to say everything all at once- you can stop the conversation at any time.

I was due a check up appointment a couple of weeks ago and was really anxious but also had some medical questions. I did the online chat with a lovely nurse who made a huge difference in the first 5 minutes. No one knew what we spoke about, it was all confidential, I gave my name but you don't have to. 

I really do understand how you are feeling about keeping it all in so you can cope and wanting to keep it to yourself, but although it is really hard to take that first step- in the long run it will be so much less exhausting for you and it will enable you to use all of that strength that you are showing in keeping it all inside, to get through this cancer journey and treatment. I found that once I had been able to open up a bit how I felt, I actually felt a bit stronger and more in control. 

A lot of people on here seem to find it helps just writing out on here how they are feeling so please continue to do so if it helps. I see you also are in the Emotional Support Forum and I hope that is helping. There is also another forum on here that may help. I will pop a link below and you can have a look in your own time if you feel it may help.

(+) The Room - Macmillan Online Community 

Lastly another couple of links where Macmillan can help and different ways to get support.

Getting help with your emotions | Macmillan Cancer Support

Emotional, financial and physical help for people with cancer | Macmillan Cancer Support

Jane

Hi again B74, I hear you and I empathise. My own thought process was slightly different. When I was on the two week pathway and having tests, even when it was the ultrasound and hysteroscopy, all I said to my adult children was that I was having some gynae tests, and mentioned fibroids and a possibly hysterectomy , which wasn’t untrue as I’d been told I had a few of those some years before. I didn’t tell them it was cancer when I got my hysteroscopy results, but waited till I’d had the predicted staging MRI and chest X ray and the results of those. But the reason I did this was because I didn’t want my son to patronise me and I didn’t want my daughter weeping and fussing. Similarly, even though I’m a church goer, I didn’t tell anyone till I got my hysterectomy date, and even then only told the pastor and two others who I knew wouldn't fuss, and told I wanted it kept private. I’m very much a Facebook person, but said nothing on there, but decided if I did mention it I’d do so after my hysterectomy when it was done and dusted (or so I thought). I help local low income families and I told two of the people I help, but only because they’re basic down to earth blokes and wouldn’t make a fuss. I hear you that you fear not being important enough and being let down. I hear you on that. My own main fear was that other people’s reactions to my having cancer would be that they’d fuss and make me feel like a victim, whereas I wanted and needed to cope. I’d didn’t want anyone’s reactions to undermine my determination to stay on top of things and get through this. That was I think my late father’s privateness and stoicism coming through. I just wanted it to be “business as usual”. Not just wanted, needed. Thankfully my mother died in 2014 so I didn’t have to involve her in this at all and have her trying to use this to bring me down and make me a victim. So all through my tests, scans, diagnosis, operation and treatment I carried on as usual. I carried on doing my voluntary work in the community, and carried on running my dog rescue charity (I do this from home as it’s basically admin). The only time I wasn’t “around” was my op day lol. 

I don’t usually self disclose very much as I don’t like drawing attention to myself as I don’t want to be treated differently. But during this whole process I recognised that if I was going to be able to maintain my attempted positive outlook, or at least my positive face to the world, I needed to let someone know how I was feeling. As long as that someone was “safe”, and that’s a hard one for me. When our primary care givers have either been absent or abusive, it’s hard to feel like anyone is safe. When I first called my CNS it was with questions and not about how I was feeling, but I did later. They worked office hours Monday to Friday and I’d either phone or email. If I ever got overwhelmed with anxiety evenings or weekends, and couldn’t distract myself, I phoned the Macmillan helpline on 0808 808 0000. Through talking with them, I learned that it was okay to be anxious, it was okay to feel overwhelmed and up and down and all over the place with it - and that none of this meant I wasn’t coping. It was all matter of fact for them and it helped ground me. I leaned to manage the waves and troughs through letting it out a bit with them. And letting it out a little took a bit of the pressure off and actually reinforced my resolve to cope and present a brave and coping face to my family and the few people I’d told. 

Hi - lots of great support tips above.

Can I add as someone who finds phone stuff really hard that I've both used the on-line chat in a situation where I absolutely wasn't coping/felt over-whelmed – didn't even give my name just said I don't feel I can give any details right now. The nurses and the quality of advice was excellent, I felt (the nurses were giving me emotional support primarily so not just related to cancer stuff).

Even on the 'phone when I've managed to call I've said I don't want an account thank you and then when asked my name that I don't feel like giving it right now, but if you'd like to use a name please call me (an alias I chose) for the day. Somehow if you're not talking about yourself but using a persona it can help sometimes. You might be totally different to me. And only you know what is do-able or not.

There are many women trying to present as strong when their vulnerability is immense.

Sending good wishes. 

Hope you don't mind me sending a virtual hug. I'm funny about hugs in real life, but like virtual ones because I like feeling that people are listening to me and that they care. 

Thank you