Hello Shell02 and welcome to the forum. 

I'm sorry to hear that you're struggling with things at the moment. The effect that cancer can have on a person diesn't necessarily stop the day you are given the "all clear" and it can be difficult to find the way forward with things. 

We've lots of members here on the forum who will have experienced similar feelings to you. I'm sure that some of them will pop along to say hello but I'm going to tag in [@Jolamine]‍ and [@Chriss]‍ as two ladies who I'm sure will be able to share their experiences and support. 

We've some information on our website Shell02 that you may also want to read through here and here. Much of the information is as applicable now as it was when you were going through your treatment. 

You might also find it helpful to speak to one of our team of nurses for some support and advice. They're available Monday to Friday 9am to 5pm on 0808 800 4040. Do give them a call Shell - they'll be happy to talk to you. 

I hope that some of this helps but please don't feel that you're alone. Keep in touch and I know the members here will do their best to support you. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi there ...

So sorry your finding it hard going at the moment... you don't say much but reading between the lines, it sounds like you need to talk through those feelings ... I'm on here most days, if you want a chat ... please reach out for help .. I'm sure McMillan may be able to point you in the right direction .. and they are lovely to talk too .. I used them a couple of times before my masectomy... when I was really low and scared .. it really helps talking to someone ..

Sometimes things hit years later, and then it's hard to understand why we feel like that when we should be really happy wer still here ... there's so many emotions .. but the more you can share feelings, will help you cope again .. even if it's baby steps ... sending you a vertual hug... Chrissie xx 

Hi Shell,

Can you tell me why you needed a lot of operations throughout your first 10 years? Although you feel that you should be able to move on, it can be difficult to do so. One thing that anyone who has had a cancer diagnosis needs to learn to live with is the fear of recurrence.

I was first diagnosed with breast cancer 10 years ago and, was diagnosed with grade one Mucinous Carcinoma. I had a lumpectomy and took Tamoxifen for a year. My surgeon told me that if I had to have cancer, this was one of the best types to get as it was one of the less aggressive forms.

Almost a year to the day later I found another lump in the same breast. By then I had moved to a different hospital and, my care team there was quite puzzled as to why I had a new primary within a year of my first surgery. This time I had a double mastectomy, followed by Letrozole for 6 years. I stopped taking this in July 2017.

Prior to my recurrence, I took my surgeons words as verbatum and considered myself lucky to have an early stage, slow growing cancer. It took me some time to accept that, despite this assurance, it had recurred so quickly and, I still have some dark days when I think about it.

Have you any idea why you can't move on? Do I take it that you still need more operations? I attended some of Breast Cancer Care's 'Moving Forward' courses. They also run courses on bra fitting and post-surgery fashion shows. These are run throughout the country. The Haven and Maggie's Centre also have drop in centres, where you can drop in for a cuppa and a chat with others in a similar situation. They also offer alternative therapies, seated yoga classes and, walking groups for different abilities. All of these are free of charge to help you to relax.

If you feel the need, these centres also have counsellors, although you need to book these sessions in advance. As well as getting individual guidance, there are also pain management classes run by physios and psychologists. You might find it helpful to enquire what is available in your area. I found that when I joined some of these groups it helped me to move on. I have now moved on to self-help groups, which we started up after these classes finished.

Chrissie has suggested taking things in baby steps and, this is the best way to go. Take things day by day. Once you meet some others who are also affected by cancer, you will begin to realise that you are one of the luckier ones. Do you have any support from family or friends? Although this can be a great help, many find it easier to come here and talk to strangers, who have experienced what you are going through. This also avoids stressing family members any more than necessary. You will soon become part of our community and, I hope, begin to look forward to life again.

We are always here for you, whether that's for a chat, advice, information or simply to rant. There is nothing that you can say that we haven't  experienced for ourselves.

Kind regards,

Jolamine xx

They kept putting implants and expanders in, but my body kept rejecting these implants, woke up 2005 I had drain in left side, that was an operation I didnt know I was havinghe made my left side bigger a maxopexy, then more operations on right side another expander but that was to small no saline could be put in it, 2008 consultant disappeard, so they put me under another consultant who had been involved in my operations, I had operations on my own, I went to appointments on my own no one was bothered, this other consultant and his nurse in 2009 was bullying and nasty to me, so i stopped talking to all of them, but i had to have 2 more operations take small expander in for a larger one, I couldn't wake up properly from this operation I didnt know where I was and who I was disoriented  I've never felt so I'll in my life. I will be back tomorrow I have problems with the dark thank you

Hi Shell,

It sounds as if you have been very unlucky in your care team. I have also experienced the bully boy tactics from my first surgeon and his breast care nurses. I am a strong person, but they almost had me questioning my own sanity at the end of the day.

I stopped breathing under anaesthetic 23 years ago when I was having a gallbladder operation. Since then, I now have to have fibre-optic intubation for any operation and, have to stay awake without coughing until they get the camera down my gullet. The result of this is that every operation has that extra risk factor for me. I am sorry to hear that you had problems with your anaesthetic too. This must have been truly horrible for you. I will never forget the look on the Anaethesist's face when I came around. He had been standing beside me in recovery for some time and, the relief on his face was almost palpable.

If your care team are so unpleasant, can you change to another surgeon or hospital? This is what I eventually had to do and, the difference was night and day. I had a second cancer a year after my first and the new team was excellent. It really made all the difference to have people working with and for me, instead of dictating what was going to be done. My first diagnosis was 10 years ago, so I have learnt a lot in that time. You really do need to have rapport with your surgeon to get on positively in coping with this disease.

Once all your surgery is behind you, you would benefit from some of Breast Cancer Care's courses, like the Moving Forward Course. There are a number of people who feel like you do and, it helps to be able to discuss your experiences with them, especially if you are not getting any support from family or friends.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

I carnt support from anywhere, the 2009 operation I didnt wake up in post, I have this person laid on a trolley with green sheet, I wake up crying cause I dont know who it is, and if the ladies didnt see me when they got my medication between 9 and ten at night were was I? I've been under psyciatrist and psycotherapy emma the psycotherapy after so many months she didnt know what to do to help me at least she was truthful. The psyciatrist some were ok but because I gave permission for the breast clinic to speak to the psyciatrist they was chatting between each other, a lot of my files went missing and the doctors never knew a lot as they didnt recieve some notifications from hospital. So I'm not just lost I'm a mystery I know how many operations I've had have to go now it just upsets mex

Hi Shell,

This sounds so sad, that you feel so alone. Have you considered joining a 'moving forward' course or a local support group? Here you would meet people who are going through breast cancer and, by the sound of things, will be more empathetic to your circumstances. I attended both of these and made some good friends along the way.

You are also perfectly entitled to move to a different hospital when you are not happy with the poor care you are getting. I had to do this and, I never looked back after this.

Please keep in touch and let us know how you get on. Remember that we are always here for you.

Kind regards,

Jolamine xx

I saw another consultant in 2011 a lady she was nice and understanding, then cause I was still very ill I was exhausted tired couldn't go to sleep till I heard the birds I was so scared of the dark, she sent me for a cat scan she said I have violently stretched skin and she couldn't and didnt want to operate till my mental health was better, I never got better I've always go down but pick myself up, after that in 2011 I never went back to breast cancer unit and ignore mammograms, had another break down and I carnt get back up the ladder, I found out in 2012 I was overdosed on fentanyl in 2009 I flatlined, when I'm in an emotional state all I think of was why didnt they just let me die it would of been easier, I was 38 when it all started, I'm 58 I'm lost I dont see any future, I'm sorry  and thank youxx

Hi Shell,

It sounds as if you've had a hard time coping with your diagnosis and, need some help to get you out of this dark pit. Have you seen a psychoanalyst or do you see a counsellor? You may find it more helpful to see someone outside your hospital setting. There are organisations or meetings held throughout the country. These are run by Maggies, the Haven, Breast Cancer Uk, etc. Breast cancer also run various courses. Their moving forward one is very helpful. There will also be local support groups within your local area. Ask your GP or practice nurse about these.

You are obviously a strong person, when you can pick yourself up when you are down. Please don't ignore your mammograms and get back in touch with your breast cancer unit. What are your next 2 operations for? Ask your GP to refer you back to the clinic. Life is too precious to ignore the chance to stay well & healthy. I started off my cancer journey with very low self-esteem and emotions. I soon realised that I was at rock bottom. It's a long story, but my care team just weren't supporting me either.

When you are this low, the only way is up. I changed surgeon and hospitals and, although I had to have further surgery, I have never looked back. I find that having a positive view on my situation has been so much more helpful and, this has come through self-help groups and counselling. You really do need help to see the sunshine through the showers (or in the case of the last few weeks, the deluges!).

How supportive is your GP? An in-depth chat with him/her might also be helpful. Write down how you feel and why you feel like this. There is certainly a future for you. At 58 you are still young enough to start living your life. Your cancer is only grade1, like mine. We are fortunate that we have caught it early.

Doing nothing about your state of mind is not an option, you really do need to take the bull by the horns and seek help. The next step is up to you.

Kind regards,

Jolamine xx

I'm going to get a blackboard and hang it in my living room write a lot what you have said on it, its hard really I live in a caravan by no choice of my own, council and support worker not interested, support worker couldn't wait to dump me i dont drive it's more isolated. I will try and thank you very much, I still have this encapsulated implant in from 2010 and the pain over the years from shoulders arms and hands, dropping things, carrying things, falling over, I had carpal tunnel operations in 2004, as the chemist gave me a foreign brand of tamoxifen I kept filling up with fluid that did the damage first, but this is proper electroshocks, I'm stuck as well as lost I will keep in touch thank youxx