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5 years post diagnosis and struggling to cope

4 REPLIES 4
drdspg
Member

Re: 5 years post diagnosis and struggling to cope

Hi RuthAnna. It's not at all easy to " move on". I was diagnosed with breast cancer 3 years ago and it is affecting my life in so many ways. I'm still not back at work and am awaiting reconstruction surgery. One of the things that has been most helpful for me has been mindfulness. It has made it much easier coping in frantic moments. It's worth asking GP/ oncologist if they know of cancer related mindfulness therapy. This next is purely personal so I cant " recommend" as it's hard to say how things affect others but over the last two years I have been involved with Quakers. I have found for me this has been amazingly valuable. I am not Christian and always have bee ( and still am) an atheist. It has helped me to find like minded ( and compassionate ) people. I think sometimes the realisation that one can't get over something life changing but one can live with and adjust to a new reality is helpful. I was diagnosed with leukaemia in my teens and had many years of treatment including a bone marrow transplant. Although this is over thirty years ago it still has a profound impact on my life. Having said this, please don't think I live in a hopeless huddle; I'm married to a wonderful man ( as you may guess no children), went to University, trained in medicine and have a fulfilling job. I have gorgeous nephews and nieces and live in a beautiful part of the country..
I think what I am trying to say is that it is possible to have great positives in a life which has been changed by huge trauma. The positives don't take away fear, pain and loss but make it easier to live with them..
I may have just rambled a lot with little purpose; hope there's some sense in there..

Petal88
Member

Re: 5 years post diagnosis and struggling to cope

Hi I usually post on another thread but saw your posting RuthAnna. How are things now? I am nowhere near as far down the line as you but empathise with lots of what you say. I have had IBS for years and now every time I get a pain in my stomach I wonder if it is that or something more sinister. I try hard not to panic but that's easier said than done! I was DX last November and have had chemo, wide excision, rads and am now on a Herceptin jabs as I am HER2+. My husband sadly died a few months before my diagnosis and although I have good support from my family it is hard not having him by my side. I have used these forums a lot and taken comfort from others. I am also on a Moving Forward course at the moment. Have you tried this? I am finding it very helpful.
Ruby1
Member

Re: 5 years post diagnosis and struggling to cope

Hi RuthAnna
I really feel for you. I'm now 7 years down the line and often have feelings of omg what's going on inside me. I do suffer from digestive problems too and probably IBS along with various food allergies and intolerances and sometimes I feel absolutely rubbish and wonder if there's something else wrong. Anything that isn't right in my mind the first thing I think of is C! It's hard to live with but somehow we manage. Some people seem to be able to move on and others find it a lot harder. I vary from one to the other. xxx

Jo_BCC
Member

Re: 5 years post diagnosis and struggling to cope

Hi RuthAnna

 

Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site, who I hope will be along soon to offer you some much needed support.

 

In the meantime our helpline staff are just a free phone call away if you need to talk to someone away from family and friends.  The staff are here to support you both practically and emotionally, do give them a call.  0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

Take care,

Jo, Moderator

RuthAnna
Member

5 years post diagnosis and struggling to cope

Hello Everyone

I was diagnosed almost 5 years ago with breast cancer in both breasts.  I started 2010 with a mastectomy on the left side and a lumpectomy on the right side, at my post opp I was told that the cancer had spread into the lymph nodes on the right side and I would have to have more surgery.  This was an awful shock at the time but I saw this as a positive, I could have chemo first and then start reconstructive surgery on the left breast whilst I was having my lymph nodes removed in the right side.  After my second operation I was referred to see a geneticist where I learned I had the altered BRC1 gene, this wasnt a surprise as I had looked into my family history so the folloiwng January 2011 I had my right breast removed and double reconstructive surgery and then in 2012 I had a hysterectomy and am now taking mild HRT.

I was so positive during all of my treatment, friends, family, doctors and nurses all remarked on my positive attitude and how it would get me through my treatment.  I worked through my chemo and got back to work as quickly as I was able after each operation it helped to be normal.

Earlier this month I was signed off from oncology having had 2 annual check ups for the last 5 years, I should have celebrated this but didnt want to make a fuss as this years been tough to say the least.  I just wanted to draw a line in the sand and move on.

At the end of last year I was experiencing pain in my breasts considdering I have no feeling there this was really odd the pain was far worse than anything I had experienced post opp however my breast care nurse wasnt concerned.  When I had a further 4 episodes of this in 5 weeks over christmas and new year I was referred for a CT scan in January.  The results came back to say my breasts were fine but picked up some lesions on  my Liver and I was then referred for an MRI scan.

I was more scared than I ever was during my treatment and diagnosis but by mid march my results came back to say the lesions were not sinister I was referred to a plastic surgeon who said the pain was caused by scar tissue and may be capsular contracttion.  Since this episode however I have been really unsettled, I have been backwards and forwards to the doctors with small niggles that in my head are big niggles.  I suffer with IBS so my anxiety is making that worse, I was really poorly earlier this year with IBS symptoms and my doctor referred me to a gastroenterologist who I saw last week, he has booked me in for a colonoscopy saying there is a 2% link between the altered BRC1 gene and colon cancer.  I know the problems I have been experiencing are IBS I have lived with them since my mid twenties but the consultant has sowed the seed which is adding to my anxiety.

On top of that I have a swollen lymph node in my groin, this flarred up a couple of years ago and my doctor wasnt concerned he told me to revisit if it swelled again.  I visited my doctor yesterday and he once again said he wasnt concerned but would advise oncology so they could scan it if they though it necessary, I am having a blood test next week pre colonoscopy so my doctor said he would check the results of the full blood count. 

This again is raising my anxiety levels and even though I have had this problem before and my doctor has said he isnt concerned I still am and my mind is doing overtime I am paranoid its something more serious.

The reason I feel this way I suppose is that when I had my initial mamogram having found the lump in the left breast myself I was asked to return the following week for the results.  I realy didnt think there was anything wrong, I was only 38 so I went for the appointment alone.  When my consultant told me I had cancer in both breasts I was shocked but to be honest I didnt understand a word she said to me, my mind didnt want to take it in.  I then had to ring my husband to come to the hospital so that everything could be explained to us both.  I realise because I thought I was fine then, I am scared to take that attitude again its easier to think the worst and be told everything is ok.

On top of all of this my husband is ill with a flair up of a rare bowel disease, he has just started medication, it took a while to get a referral back to his concultant so Simons been really poorly but his meds should take effect within a week.  I guess I have been trying to keep it all together to help Simon and now feel I am falling apart.

I look at other couples and wonder why their lives look so easy compared to ours, I wonder why we have been dealt the rotten cards we have.  I want the postitive person I was after my treatment to return, I liked me then.  I am fed up with feeling negative and that every ache pain and niggle is cancer, there isnt a day goes by that I dont think about cancer and I constantly wear a mask so noboby knows how I feel and struggle.  On 26th November it will be 5 years since I was diagnosed, I forgot all about it last year and when my Dad reminded me I thought how positive it was to forget all about it.

I am sure I will feel better when Simon shows some improvement and when I have had my colonoscopy as the results are instant.  I have had counselling twice now and my GP is referring me back again, I think that will help. 

I wondered how others cope and how they remain calm I want to forget my diagnosis anniversary again and put this awful year behind us.