From Finding the Lump to starting treatment:
Those first 2 months-a whirlwind of confusion
Thursday 7th September 2023
Just another day. An ordinary day in an ordinary week. Maybe not such and ordinary week as I had just started a phased return after having 6 months off work due to family and personal issues regarding mental health. Not such an ordinary day because, as I sat watching ordinary tv on my ordinary sofa I found a lump in my breast. I had been back at work for 1 day. Although my job role was the same as earlier in the year when I’d gone on sick leave, I was in a new school and introducing a new role to them, it was to be really exciting and a great opportunity for me. I had been there for just 1 day.
Over the past few months my breasts had seemed to be constantly outgrowing my bras. I had put weight on and presumed it was because of that, but I was forever easing my right breast back into my bra cup and it never seemed to sit right as it always had. I had brought bigger bras but was still having the same issue. That night, as I adjusted my breast back into its bra cup, I found the lump. It was hard. I withdrew my hand quickly, like I’d had an electric shock. I couldn’t believe what I had just felt. What on Earth? Why me? Why now? I reached to touch it again, hoping it was all in my imagination, but it wasn’t. There was a lump, a hard lump, like a firm plum. It didn’t move. It was just there. I ignored it, I didn’t say anything to my hubby. Maybe it will be gone in the morning?
Friday 8th September
I awoke and daren’t touch it, if I ignored it then maybe it would go away, but when I did, the lump was still there. I rang my GP and got an appointment for next week. “Is it an emergency?” the receptionist asked. I replied “well, I have found a lump in my breast, I am worried that its cancer, so yes, it is an emergency”. She explained that it was usually a 2 week wait but if I thought it was an emergency, they could fit me in earlier. The usually polite, typically British me could’ve said “its ok, I’m not in any pain, I’ll wait” but I didn’t. This is an emergency in my eyes, so I expected them to treat it as such.
Tuesday 12th September
The district nurse confirmed there was a lump. I had really hoped it would’ve disappeared in the few days between ringing and my appointment but no, it was still there. It took the nurse no time to find it. I had a mammogram in January 2023 which had showed all clear. The nurse said I needed another mammogram and referred me to the local hospital, saying it would be no longer than 2 weeks wait.
Wednesday 20th September
I attended for my second mammogram this year. Now I have to wait. Maybe it will be a fatty cyst. Maybe it will disappear. Or maybe I have cancer…
Meanwhile I am now back in work full time and loving it already. Part of me feels a fraud telling everyone about the plans I have, the ideas, the things I can support with, when all the time there is a little voice saying “but what if its cancer? What if you die? You can’t do all that then can you? Are you promising what you can’t deliver? Are you already letting these lovely people down?”. My manager knows about my medical investigations, but no one else at work yet. Maybe it’s just a false alarm and nobody else needs to know.
Friday 6th October
I had an appointment at my local hospital for an ultrasound scan of my breast and under arm, I had ultrasound-guided biopsies taken in both places. I don’t mind needles, but I didn’t look too hard at the biopsy needle, out of the corner of my eye it looked quite thick for a needle and very long. It stayed in the corner of my eye, and I would let it no further, it was a need-to-know basis and I knew enough. The areas were numbed first, and the staff were brilliant, they told me it could be a bit uncomfortable and then inserted the javelin, I mean needle! The radiologist (I later found out Chief Radiologist) said I will hear a sound like a staple gun. Now someone who has worked in schools all her life knows that sound, and it was, exactly like a staple gun going off inside your body. Now to await results. Still hoping it’s a fatty cyst, but why are they taking a biopsy under my arm pit then? I’ve heard worrying things about cancer spreading badly once it’s in lymph nodes. I hope the wait is not too long.
Sat 7th/Sun 8th Oct
“It’s now or never, my love won’t wait” Elvis Presley
We had taken ourselves off on a weekend away in The Lake District visiting my Son and his Partner. We picked up my Daughter from the Midlands on the way so I would have both my children with me, face to face, over a 48 hour period. We stayed in a lovely Air B&B only 10 minutes from their flat. We visited some local beauty spots (where we saw otter running across the path right in front of us), walked the dog, enjoyed a takeaway for our evening meal and croissant treats for breakfast. I knew this had to be the time. This just HAD to be when I told my dear children of my discovery of a lump in my breast and possible outcomes thereof. Up until now, no one really knew, other than my manager and a couple of friends, I wasn’t ready to broadcast to the world and, also, I wanted my children to be amongst the first to know, and I wanted them to hear it from me, face to face not over the phone. We are all keen board game enthusiasts so, whilst my Hubby watched the rugby on TV we enjoyed a selection of various games that each one of us had contributed to the haul to chose from.
The first night of Board Game Fest 2023 was not the right time. I wanted us all to enjoy our time, to play games and have some fun together. I wanted to be able to drink them all in, to be with them for one last night in our lives without the possibility of Cancer being invited too. Yes, I worried that I was chickening out, how could I ever tell them? Where would I start? What would I say? Should I even say anything before I knew more detail? A great night was had, and we looked forward to more of the same the next night. I had no real plan of what I would say and when, we would have all day together tomorrow and, whenever the opportunity arose, that’s when I would tell them. We had another lovely day and evening and reached the point in the proceedings where there would be just one more game before the locals had to go home for work the next day, then us tourists would also be leaving in the morning.
It was now or never.
The final game was to be Taskmaster, I didn’t want to put a damper on everything but what choice did I have? There can never, ever be a good time to tell your own children that you might have cancer. I told them. I have no idea what I said. I can remember my son smiling at me bravely and encouragingly, and my daughter squeezing my hand. Obviously, I’d dropped a bit of a bombshell but all I felt was their love. There were a few questions which I answered as best I could. I was in Mum-Mode, I was doing ok, I was holding it together.
Then, an amazing thing happened. We played a game together that was the best and funniest we had played all weekend. I laughed until my face ached, and still laughed some more. Cancer was brought to the party, it showed its face and made us sad, but, not for long. It was all about us, WE won this round, we shared the news and still had a great laugh and a brilliant time. Anyone who thinks board games are boring has obviously never played with me, my son, my daughter and my “bonus” daughter. It felt so very special, and I absolutely knew it had all been right time, right place.
Monday 16th October
That was a very long 10 days: the waiting, the not knowing, but today I have an appointment to get my results, hubby is coming with me It turns out that my appointment was with a breast surgeon, although obviously I didn’t realise that at the time, she was a very lovely Italian lady who immediately made me feel both important and cared for just by her body language. She was accompanied by a breast care nurse. My mind raced between wanting to hear words like “fatty cyst” and “benign” and not wanting to hear the one word “cancer”. Unfortunately, I was told the one word I didn’t, we didn’t, want to hear. In a very gentle and even reassuring way I was told I have cancer.
My whole word fell through the floor. Why me? Why now? What did I do that was so bad, that I deserve cancer?
I nodded but said nothing, tears started to fall. I was offered tissues, but I had already taken a hankie in my pocket, just in case, it was a hankie belonging to my dear late Grandad, I took it because I needed my grandparents “with me”.
I was told the lump was cancerous, that it was Grade 3 (fast-spreading), it was an invasive cancer and ductal. Tests showed it was oestrogen negative and progesterone negative and that I needed to wait a little longer before the results to see if it was HER2 positive or negative, these final results would enable an oncologist to decide the best course of treatment. I was told that there was one metastatic node and my next steps would be an MRI scan and meeting with the oncologist. There would be chemotherapy initially before any surgery which may be lumpectomy or mastectomy, depending on MRI and any other test results.
You might be feeling amazed at how I remember all this detail- well, I didn’t. I heard the word cancer. Then I tried my very best to listen but I just heard the odd word. Obviously well used to this I could see the breast nurse scribbling everything down frantically in a booklet which she then repeated back to me the bullet points of what the surgeon had said. The Booklet was called Treating Primary Breast Cancer.
Wed 18th Oct
I had an MRI scan at the local hospital. I’ve never had one before but I figured it is basically lying on a bed in a tunnel for a bit, nothing that I would find particularly distressing. My only concern is that it might be cold, but thankfully it wasn’t. I had to lie face down with my head in a hollow, a bit like having a massage, only there were two more hollows in the bed strategically placed under my breasts. Once I’d completed my round of fit-the-breast-in-the-hole, the MRI began. I think I was only in the machine for around twenty minutes, it was very noisy but otherwise okay.
The next step for me will be having the clips inserted. These are small metal clips to “tag” the cancers position, then, should the chemotherapy shrink it to nothing, they can still know where it was when operating.
Fri 20th Oct
I received a call from my breast cancer surgeon. She told me that the MRI had confirmed the main lump and another close by (which had been seen on the ultrasound scan). It had also showed another small suspect area in a different place in the same breast, therefore I would need another ultrasound guided biopsy asap. If this showed further cancerous areas then it would mean mastectomy after chemotherapy, rather than lumpectomy.
Mon 23rd Oct
I had another ultrasound guided biopsy and a clip inserted onto the lymph node under my right arm. I really don’t mind needles but the biopsy needle and the clip inserter did seem quite long from the corner of my eye. So, they stayed there, in the corner of my eye. I needed no further information. The biopsy needle sounds like a staple gun going off. In this instance, it didn’t biopsy twice, on the third attempt I joked “don’t you just hate it when you run out of staples”.
Mon 6th Nov
I had a call from my surgeon, she said the third biopsy showed no sign of cancer but there had been a lot of bruising (the misfiring staple gun?) so the radiologist may yet want to rescan. I will have an appointment to insert the other 2 clips soon. She said that I wouldn’t hear from her again now until after the chemotherapy is finished.
Mon 13th Nov
I met my Oncologist. He gave me lots of paperwork and information, mostly it seemed that he talked about side effects. On departure we christened him Dr Doom. I had homework- reading through the paperwork again, trying to make a modicum of sense of any of it, and some videos to watch about Velindre, the Cancer Hospital. He recommended I get my Covid booster and flu jab before my therapy starts. I had accepted all the covid jabs to date but had never had a flu jab. I went home and was able to book them straight away, in fact, I had my flu jab that very afternoon.
Tue 14th Nov
I had a call from the Nuclear Medicine Dept asking me to attend for a kidney functioning test at Velindre, the Hospital of Hope in Cardiff. I was able to book this for tomorrow and my Covid jab on Friday. I forgot to ask when booking so I called the Macmillan Cancer Support-line to check that I would be ok to drive myself tomorrow. They advised yes as its just having bloods taken throughout the day.
Wed 15th Nov
The kidney function test took up most of the day. This is something that needs to be checked before any therapies can start. I was injected with a substance at 11:30 am, went for a sandwich and a cuppa in the café and then back for bloods taking at 1:30, 2:30 and 3:30. I visited the Maggie’s Centre next door to the hospital before driving home. Maggie’s had been recommended by a friend, they are a charity with bases all over the UK who support cancer patients and their families and friends. I was shown around an absolutely beautiful building with meeting rooms, a library, volunteers and advisors are on hand to chat, a private area. The area is mainly made of wood with furs and comfy furnishings, with make it feel both safe and homely. Walking into a centre is like stepping into a big hug its, just stunning, and at the heart of every Maggie’s centre is a long kitchen table for people who want to sit and chat, its all very well thought out. I accepted the cuppa and took a snack, both freely available for their guests. Today I sat alone, cradling my cuppa, and looking out onto the gardens.
Thu 16th Nov
Back to the local hospital for more clip insertions. I saw the same Head Radiographer, she “stapled” 2 clips on the 2 cancerous areas they had already found in my breast, then, as suspected, she wanted to re-biopsy the other area that had showed on the MRI . The ultrasound biopsy was not an easy ride this time as she struggled to find the best area, the rebiopsy was taken but she was unable to insert a clip due to bruising from the biopsy. I was in there for an hour and I came out feeling quite beaten up.
Fri 17th Nov
Had my Covid jab Number 5.
Sat 18th and Sun 19th Nov
I awoke with a migraine that continued throughout the day- possibly due to the vaccination?
Mon 20th Nov
I had a hospital appointment in Newport where we met with the Breast Oncology Clinical Nurse Specialist linked to my Oncologist, she was lovely, as all my team seem to be. I had bloods taken for normal assessments and also for genetic testing in case I carry the BRACA gene. If I do this could have implications for other females in my family- my sister, my daughter, and my niece. I had an MRSA swab. I signed all the consent forms ready for treatment, which she went through again with me just for good measure. I could see my husband zoning out, hearing all of the possible side effects and things that could go wrong were too much for him the first-time around.
Thu 23rd Nov
This was my last day actually in work until I really don’t know when. I work in a school, and I was immediately told that, once chemotherapy begins, I will be unable to be around that many children because my immune system will be taking such a battering. It broke my heart to leave that day, not knowing if and when I will go back.
“If we could all see the world through the eyes of a child, we would see the magic in everything”
“Children are like stars; they sparkle and shine. They are the most precious things we will ever have in our lives”
Fri 24th Nov
Back to Cardiff for my PICC line insertion- “Nah, I doubt I’ll need a picc line” were the words I said to my hubby right back after initial diagnosis. His eldest has a lot of medical knowledge gleaned from work, friends and personal experiences, she had told me that I’d “probably have a picc” just like her friend did. Up until that day, I had never even heard of a picc line, never mind know what one was. I checked it out on the NHS site, just in case. I gave it a cursory glance, convinced that I wouldn’t be needing anything like that for my “curable breast cancer” the doctor described. “Okay” I thought, “so its just a little thing popped into your skin on your arm so they don’t inject you too much as they use that to connect your needle and deliver treatment”. I didn’t worry or go into too much detail, convinced I wouldn’t need one. How wrong was I? Yes, a picc (peripherally inserted central catheter) line gives the medical team access to the large central veins heart your heart. It is used to deliver medication avoiding frequent needle jabs which could damage or irritate the smaller veins in your arms. I had been given all the blurb but I was still a bit naïve to the process when I arrived at the hospital for my insertion. It turns out that its not just the little thing attached to your arm that they put a needle in. Oh no, it’s a long thin tube that goes from the place of insertion, my upper arm, then internally up my arm and across my chest to arrive in position above my heart, plus not one but 2 little plastic clips, one of which is partially hooked under your skin like a little tic trying to burrow its way in. They measured me up for the tube length like being measured up for a tailored jacket, only without the choice of material. I think I had a local anaesthetic; I didn’t feel a thing while the doctor used ultrasound scanning to position the picc. Next followed an x-ray to ensure it was all in position before adding a needle connector (not a medical term!) and securing everything into place. My team of 2 picc inserters seemed pleased at the initial x-ray and were over the moon to be told they’d scored “a perfect bull’s eye” by the radiographer. The whole thing was covered in a transparent plaster then covered in a short length of tubular bandage to prevent anything catching on clothing. For the first week it took me a while to get used to it until things settled down. Although I am aware of it constantly, like most other cancer-related things, I have mostly learned to live, dress and sleep with it now. Its harder sleeping alongside another as you cannot be fully in control of if it got knocked and I never realised how often I slept on my right, until I couldn’t do it comfortably anymore. That said, if I sleep alone, I can now sleep on either side with no real problems. I rarely do that but, on the odd occasion that I have it has been quite a relief and meant I can fully relax.
