This week we talk to my cousin, Rhian. A busy working Wife and Mother, and now a breast cancer survivor. Rhian’s story is tough, she went through hell with her treatment and it certainly wasn’t smooth sailing but she’s come out the other side healthy, full of positivity for life, determination to take on the world, and intent to help others by sharing her story.
Can you tell the reader’s a little about yourself?
My name is Rhian, I’m 47 years old and married with 4 daughters. I am a teaching assistant at a local primary school. Prior to this I was a stay at home mother for about 10 years. My previous career was a nurse and midwife.
What has been the biggest challenge in your life to date?
Aside of the usual challenges, such as raising a family, I think my biggest challenges came when I was diagnosed with breast cancer in 2016 at the age of 44.
How did you feel when you heard the news? What was your first thought?
I knew before I was told, if that makes sense. I suddenly developed what I consider ‘health anxiety’. Suddenly become paranoid about my health and, although it sounds over the top, my mortality. This led me to being hyper vigilant in a few aspects of my health. It also led me to finding a breast lump. There was no denying the lump, I put my fingers straight on it. I really believe I was meant to find it.
So what happened next? Tell us about the treatment process?
I was diagnosed with DCIS which is the earliest form of breast cancer. It is typically treated with lumpectomy and radiotherapy. However, my treatment plan was not straightforward!
I saw my GP about the lump and was referred as per protocol to be seen at a specialist unit within 2 weeks. At this appointment, I had a mammogram and ultrasound scan. I was told at this point that I would need a biopsy which was done there and then. Eight long days later I was at outpatient’s clinic awaiting the result, or so I thought. Clinic was running very late, I can understand, they are dealing with women who are often receiving bad news and it’s not something that can be or should be rushed. So, more than 2 hours of waiting and I was called in to the room and asked to undress – why did I need to undress as I was only having results? The alarm bells are ringing loudly now!! I was told, after an examination of the lump, that the result was inconclusive.
The way it was told to me was that the lab classifies the lump on a scale of 1 to 5. Five being definite cancer, 1 being benign. Mine was classified as a 4, so this meant another biopsy and another week long wait for results. I asked the Doctor what her opinion was, and she said she thought it very likely that it was cancer. It felt like torture. Trying to get on with everyday normal things was tough. I remember that it was World Book Day the following day, and as well as getting my children sorted, working in a school I had to get myself sorted too. Put on my smile as well as my costume and get on with it.
Mother’s Day was very tough. We hadn’t yet told the children as we didn’t know what to tell them as we didn’t know ourselves. Going out for a family meal, trying to keep a sense of normality, whilst having this constrained weight on my shoulders was so hard, I look back and wonder how I did it! Anyway, the following Thursday I’m back in outpatients sitting and waiting for my name to be called. Not so long a wait this week, and I wasn’t asked to undress! The doctor told me that the result was the same graded as a 4 on lab reports, and she felt it was time to remove the lump. I asked how long it would be before that would happen, and she replied, “We’ll have you in on Monday”.
So, a mad panic ensued, not just for me, but I’m sure for my employer and colleagues too!! March 2016 the lump was removed as a day surgery case, and then yet again, the wait for results began. A 10 day result this time… or so I thought. My recovery was uneventful, the worry was very prominent, but I lived with the hope that if 2 biopsies could not diagnose cancer conclusively, then that must be a good thing. Another Thursday and another wait in outpatients, I was called in and the consultant then said that the results weren’t back, the lump had been sent to another hospital as the lab could not diagnose it. This worried me, was it something really odd and unusual that it couldn’t be diagnosed easily? When we think these thoughts, why are they always in a negative way?!
Two weeks later, sat back in the same waiting area. The Consultant, who whilst fantastic, is renowned for not having the best bedside manner, so when he took the time to sit down to talk to me, I knew something was up. This is when I was told that I had DCIS, that it was highly treatable and that I shouldn’t worry. Oh, and I need a 2nd operation to try and get a margin of tissue that is clear of DCIS so that they can be certain that there is none remaining. This needs to be done asap as the cavity where the lump was will close and there’ll be no way of knowing where to take tissue from. So, surgery is arranged for Monday – April by now.
This time I stay in overnight as I have a wound drain in. I’m tired, stressed and generally fed up. Tuesday comes, and I can have the drain removed and am allowed home. This time, I’m shattered. Two anaesthetics in a month took their toll. Two days later, I feel quite ill, have a temperature and just feel generally unwell. I call my breast care nurse, who is wonderful. She asks me to come down to see her. So, my husband and I go back to the hospital and after examining me, she prescribes antibiotics and stronger painkillers. I’ve strict instructions to contact them if I feel unwell at all otherwise, I will see them at my next outpatients’ appointment the following Thursday.
I take the course of antibiotics without any issue and await my next appointment. The night before this appointment I wake in the middle of the night to find my clothes wet. I go to the bathroom to see what’s wrong and am aware that there is liquid coming from the wound, which I can only describe as coffee colour. It’s the middle of the night and I decide to just wait until the morning to ring my breast care nurse. I do this first thing in the morning and after she has spoken to the doctors, they advise that as I am coming into clinic that afternoon, they’ll see me there!
It’s Thursday, so of course I’m at outpatients – again. I’m called in and given the results of my last surgery, whilst I am told that the surgery was not successful in obtaining clear margins and therefore, I would need a mastectomy, the chaos that ensued when the consultant saw my wound, meant that the news of mastectomy weirdly, paled into insignificance. I was suddenly on a bed, with nurses and doctors looking at my wound, they were afraid to take the stitches out at that is all that was holding everything together!!! It had to be done through and I think over a litre of fluid drained immediately.
Swabs were taken, antibiotics were given and the wound – or cavity as it’s now called, was packed, and district nurses were contacted to visit every day to repack the cavity. Remember I said about the clinic running horrendously late the first time – today, I was one of the reasons for clinic over-running. My consultant was back and fore between patients constantly. Somewhere in all this there must have been a discussion about the mastectomy and that it couldn’t be done until all traces of infection had gone. I eventually go home with bags of medication, a district nurse referral and an appointment for 2 weeks’ time – with the strictest of instructions about what to do and who to contact at any time.
The next 2 weeks pass with a constant visit of district nurses coming each day to pack the cavity. They were all wonderful. Mentally I was low, I’d had 2 operations and knew that I was facing a 3rd but had no idea when. As the days went on, I could see that the wound pack was becoming clearer, this gave me some positivity that the infection was clearing, and I was almost quite buoyant going for my next appointment. My body, along with the medication and care of the district nurses had cleared the infection. Finally, I had hope that the next step could commence.
Again, I’m called into the room, I know the drill now, undress, put a gown on, wait for the Consultant to come in… in he walks and take a look at my wound which he agrees looks infection free… However, the cavity is large and has the potential to become infected again. Before I can have a mastectomy, I need a 3rd operation to close the cavity up to eliminate any chance of infection. I am beyond distraught. The end just keeps on moving further and further away. Surgery is booked for Monday, we’re now in May. It’s a day case and seems to go well, but I trust nothing now.
I ask about a double mastectomy, I hate these boobs, I just want rid of them. I’m told that it would be over treating me, and a single mastectomy is treatment enough. Just to add another blow, I’m told that the mastectomy won’t happen for approximately 6 weeks to allow my body to heal. So, I go home, and think I’m just lost. I’m empty of everything by this point. The following week I’m back at outpatients and am booked information mastectomy on June 13th. I managed to bring it forward a week, as he wanted to do it on the 20th, however, my daughter was away on a residential school trip that weekend, and I didn’t want to either tell her before she before she went, or for her to be told when she came home that I was on in hospital – again.
At this point, my elder 2 children know what I’ve been diagnosed with, treatment plans and all the upheavals that I’ve been through. The younger 2 just know I have a bad boob, something they find funny in their own way!!! We’ve tried to keep it light-hearted for the younger two as they’re younger, just 9 and 11 at the time.
So, life goes on for the next month, I even go back to work for the 2 weeks prior to the mastectomy. Looking back, I wonder how the hell I managed that, but it gave me a sense of normality that I needed at that time. I helped my mental health immensely to escape the ‘cancer bubble’ for a time. Work and my colleagues were hugely supportive, and I am truly grateful for their support though it.
Monday 13th June and yet again I’m on way to the hospital. It’s morning surgery so I have to be in by 7am. My husband takes me to hospital, but he doesn’t stay long as I want him to go home to take the younger children to school. I am adult and am capable of processing what is going on, so it is important to me that for my children, things stay as normal as they possibly can.
I’m first on the list so not too long a wait before that familiar wheel down the corridor to theatre for a left mastectomy with immediate reconstruction using an implant. Surgery is uneventful, but recovery isn’t – come on, I’ve got to create drama somewhere haven’t I! I’ve had a rare reaction to the surgery where the ulna nerve has become compressed and has affected my ability to move my left hand. It is also excruciatingly painful. Consequently, I’m in recovery for a long time. At several points, I am in tears. It was quite a frightening experience because the medication I was given to try and ease the pain, made me so drowsy that I couldn’t explain what I was feeling, no matter how much I tried.
I was in hospital for 4 nights, which is quite a while for a mastectomy, but I think with my history of infections, the doctors wanted to keep a close eye on me. I went home on the Thursday and had an appointment for the following Thursday. I slept a lot and tried to take everything slowly. My family and friends were fantastic, I feel so grateful that I had such a fanatic support network who kept my mood lifted. Outpatients the following week and at last good news. The DCIS was widespread, so mastectomy was definitely the correct approach. There was no invasive cancer found, so chemotherapy was not needed. Four lymph nodes were removed and were thankfully clear. As far as the doctors were concerned, my treatment was overland I could just focus on recovery.
However, it wasn’t over. I remember this night so vividly. 6 weeks after the mastectomy, I was feeling healed from the surgery and just plodding on taking things easy. It was a Saturday and my husband had been working and got home around 9.40pm. We had a curry, and I’d had a glass of wine. We were watching tv when suddenly, I was freezing. It was like someone flicked a switch there was no gradual decline, it was like I’d developed flu in an instant.
I hardly slept that night and remember taking my temperature and it was around 39.8 – very high then. I was (and still am) a member of a fantastic Facebook from called UK Breast Cancer Support Group for Sufferers and Survivors, I remember posting asking for advice and was unanimously told to contact out of hours GP. I called them on the Sunday morning but couldn’t get an appointment until the evening. I was worrying throughout the day and took an overnight bag to the appointment with me, but I was sent home with antibiotics. That night, I hardly slept at all and at 8.30am I contact my breast care nurse and explained the situation.
She contacted my consultant, he was in theatre (Yep, Monday morning theatre, I know all about it)!!! He asked me to attend the ward at midday. We got there just after midday, and I explained what had been happening. He took one look at my breast, and I remember his exact words (remember the poor bedside manner I spoke of!) “I hope you’ve brought your toothbrush”! Thankfully I had! I was shown to a bed, and I just curled up on it. I can honestly say I’ve never felt so ill. At that point, anyone could have done anything to me, I was past caring. I was cannulated, bloods taken, drips put up, ultrasounds and just generally prodded and poked. I was in tears.
The following day was my daughter’s year 6 leavers assembly, I had to see it. The consultant told me I’d be going back to theatre on the Wednesday to have the implant exchanged. I had an obvious infection, cellulitis and probably close to sepsis too, I don’t think I had the energy to cry at this point. I remember being told I had to eat as they couldn’t give me some of the medication until I had eaten. I have never felt less like eating in my life. I think I managed some jelly! That night, my temperature shot up again and there was a panic amongst the nurses and doctors and yet more drips were put up. I’m sure it was against their wishes, but I went to my daughter’s assembly, cried all the way through it – the leavers assembly is always emotional, but this one was something else, for many, many reasons.
The following afternoon I went back to surgery and had an impact exchange. July now and this was my 5th surgery in 5 months. The consultant put an antibiotic sponge in with the implant to hopefully prevent it from returning. I was still on IV antibiotics and was until the Friday. I was discharged that day with the strongest antibiotics known to man – in my opinion!! The side effects were horrendous, and I had to take them for 2 weeks. The worst thing was, that all those rock bottoms I’d felt before, weren’t rock bottom, because this time I was actually there, and I knew it! I saw my GP and was referred for counselling. I remember saying to my GP I just don’t trust my body to keep me safe anymore.
I’m so sorry you went through all that. How are you doing now?
I’m well, I’m having yearly mammograms, 2018 was fine, and I had my 3rd one last week, just waiting on the result.
What message would you give to other women who are suffering with this now, or to us ladies in general to prevent Breast Cancer.
Please check yourselves, familiarise yourself with all the signs of breast cancer because it isn’t always a lump. If you are diagnosed with breast cancer, find a support network somewhere, especially one that has women who have or are diagnosed with breast cancer. Remember too that breast cancer is not exclusive to women, men can and do get it too.
Has having cancer and surviving it given you a different outlook on life? Has it changed you?
It’s changed me a lot. I cherish the smaller things more, but won’t put up with rubbish either. My health anxiety does raise itself sometimes, and I’m hyper aware of any changes or aches in my body. I worry more about my family too. If my husband or daughter is late home, I find that I think worst case scenario before the practical things. They’re getting to understand that though and are pretty good at letting me know if there delayed so that I don’t worry! I try to think about my diet more, but I’m not obsessive about it, yes I eat the biscuits, but also the fruit too!!
Making memories is far more important than possessions. We have a touring caravan and spend family time in that travelling the country, and this time with the ones who I love and who love me back is so precious.
Thank you, Rhian for sharing this with us. You have been through a very traumatic ordeal, juggling this life changing challenge with work and a family and should be very proud of yourself for getting through it with a positive mindset. You are an inspiration to those who are suffering now, and all us ladies in general, and for that we all thank you.
Written by Editor, Rhian Cable
Mum, Wife, Marketing Specialist and Blogger – Living life every minute.