Jennifer's story: BRiC for Breast Cancer Awareness

 As much I have enjoyed working from home I’m fed up of Teams meeting, dodgy wifi. Weight gain and low self esteem. Sometimes I don’t leave the house all week and apart from my hubby and son who I see once a week I miss the human contact.

- Jennifer

09/10/2020

Lis's story: BRiC for Breast Cancer Awareness

When lockdown hit I was halfway through chemo. Every time the phone rang I was terrified it would be the hospital phoning to cancel my treatment. Fortunately my chemo went ahead as planned but it was hard having to attend alone. I then had a long delay before radiotherapy started and this left me feeling very low and vulnerable. The delay was due to reducing the number of patients in the dept. to keep it Covid safe. The moving forward course and other therapies I had planned were all cancelled. It has been hard and I’ve felt very low and isolated at times. Telephone appointments didn’t suit me and I often forgot what I needed to ask.

-Lis

07/10/2020

Story of a front line #nurse: BRiC for Breast Cancer Awareness

I finished treatment 6 years ago but the annual mammogram/check up is a date that never leaves my mind. My check up was cancelled 1 week before it was due - got myself into a right old tizz about it and the fact I was terrified of catching covid as a front line nurse. When I did have my review it was very weird attending on my own - the feeling of aloneness was indescribable. I was lucky - my treatment wasn’t cancelled but I feel that my mental health struggled during the 12 week delay for my review/ check up. Think I would have gone into meltdown had it been delayed further.

- Debs

06/10/2020

Joanne's story: BRiC for Breast Cancer Awareness

 Joanne

I was diagnosed last October with stage 3 breast cancer, I was in the hospital every couple of weeks for scans then put on ribociclib to help shrink the lump down. It had gone from 3 to 9 cms in a couple months and in my lymph nodes. Then covid happened and my BCN vanished and it was months of empty waiting rooms sitting alone. Finally the surgery happened 7 weeks ago a bilateral mastectomy, first time I went in for it my temperature was a bit high so they sent me home, second time the surgeon was on annual leave as I had no idea who I was seeing, literally.. I couldn’t tell you who operated on me. I haven’t see a full face of the people treating me since the start of the year. I’m now waiting on an infection to clear so I can start chemo and have had to chase up the results on a extra tumour that was found after surgery. 5 weeks makes me wonder how far behind they are and overworked they must be. Im in fear now, that Covid is going to put us back to more hold ups in treatments. Cancer alone is hard enough!

-Joanne

05/10/2020

Lisa's story: BRiC for Breast Cancer Awareness

 

I had my final session of chemo cancelled due to Covid and surgery was on, then off, then on again. Attending appointments, surgery and in-patient stays alone were incredibly difficult and isolation at home, at a time when you need family and friends around you the most was incredibly stressful.

I suffered every complication available during treatment and I actually found myself apologising, for ‘only’ having cancer, as I was made to feel, several times, that I had a ‘second rate’ illness. I can understand the concerns, but stopping life saving treatment for fear that you may or may not catch a virus that may or may not kill you is fear on another level.

- Lisa

04/10/2020

BRiC for Breast Cancer Awareness: Karen's story

Even before the pandemic, my recovery from breast cancer had left me feeling isolated, low. Living alone and without a full-time job, I drew my energy from social meet-ups with friends and family. I filled my diary with fun, with adventures and treats to look forward to. It was how I managed my low mood and loneliness. Then Covid struck and travelling across London for hugs with my mum, coffee with friends or fixes for my escape room and theatre addictions were ruled out. As winter approaches, as the days grow shorter and darker, as new covid restrictions bite and as worries about cancer recurrence niggle, I fear for my mental health as I spend the gloomy winter months alone.

- Karen

02/10/2020

'Breast Cancer Nurses can make all the difference' - BRiC's Collective Voice

A recent Sunday discussion was our Breast Cancer Nurses, our BCN as we know them; our expectations and our experiences with them. For many people the BCN is the first person you talk to after hearing your diagnosis, they immediately become a major part of our lives, from a stranger to someone who knows our most intimate feelings in a matter of moments.

We heard that for one of our members the breast cancer nurse said the most important thing to them “It’s not your fault” – guilt is a very real and debilitating emotion and in those first hours and days after a diagnosis it’s natural to wonder what we did to deserve this, to blame ourselves for the trauma we are putting our loved ones through, for the prospect of the months of treatment ahead and the worry about what might happen. Having someone there who understands and tells us it’s not our fault is a huge relief and vital in those early days.

But our experiences weren’t all good, in fact they range from the wonderful to the diabolical and everything in between. From hugs and hand holding, to arranging appointments and giving factual information, they have so much to offer us through the minefield of diagnosis, treatment and beyond. For those who had a good experience this person was invaluable, many members said they wouldn’t have got through it all without their BCN. For those whose experience was less than positive there were stories of nurses who dismissed their fears, who didn’t return calls, who had “favourites” and would blatantly ignore some patients and spend time with others. Many of our members noted that the breast care nurses were overworked and stressed, they had large caseloads and just weren’t able to give each patient the time they needed. We heard from the perspective of a nurse who told us how it affects her emotionally and leaves her drained at home. It seems the support the BCNs receive is perhaps sadly lacking, it must be hard for them to be supportive when they are overworked and under-supported. It was clear from many of our experiences that the nurses didn’t always have time to provide the service they wanted to.

A point which came up several times was the lack of BCNs who specialise in supporting women with secondary breast cancer. Our private group has ladies with both primary and secondary diagnoses and for those with secondary breast cancer the majority had been left with no support. It takes a very special skill to provide the level of support needed for someone who has been given that news, their needs are different, as are their fears and worries. Members related feeling abandoned and alone, that their BCN simply seemed to walk away as soon as they heard. In some places determined campaigning has brought about the introduction of secondary breast cancer nurses, dedicated purely to providing a service for those ladies. It has been a long hard road, but where it has happened it has proved an immense support.

Some people found they were helped and had better relationships with the nurses in the chemotherapy unit, there were lots of stories of great relationships developing over the span of treatment. Perhaps because those were scheduled appointments and we are sitting for often long periods, able to chat and get to know each other.

The age and experience of the BCN also had effects on how the relationships work, some older nurses came across as knowledgeable and caring, others seemed jaded and to have lost their interest in the role. Younger BCNs were often bright and helpful, but perhaps didn’t have the knowledge to provide the answers we so desperately need, others made up for lack of experience with enthusiasm and a desire to help.

The range of our experiences showed us just how important a good breast cancer nurse is; someone who understands the physical and emotional effects, who can offer honest, factual information, but also be a shoulder to cry on or the giver of hugs, who doesn’t just hand out booklets, but really explains the treatments and options, who can liaise with the medical team and be an advocate for us, or just a friendly face. Cancer is a lonely place and it is invaluable to have someone there with us.