A two week wait for results seemed like a long time but as it turned out I didn’t have to wait as long as that. I got a call on Tuesday 7th December 2021 asking me if I could attend my appointment the next day rather than the following week as they’d ‘had a cancellation’. I accepted the appointment but my reaction to the ‘cancellation’ was “but have they really?” I tried to tell myself that lots of people were still contracting Covid-19 and that was probably the case while simultaneously battling with thoughts that the news wasn’t good and they didn’t want to delay seeing me. This was the moment that I realised I had stepped on to that roller coaster and the ride was already getting bumpy.
The thing with this sort of situation is you just have to get on with it. Yes you have a choice but the only sensible choice is to trust the medics and deal with it in the best way you can. That way will inevitably include tears, anger, fear, shock, insomnia….but you find a way to cope. It’s a bit like labour, it’s a daunting prospect but you can’t stop it happening, the baby has to make it into the world and that’s that! If you do have a serious health issue that’s not going to go away without medical intervention you have to surrender to the inevitable.
My husband runs his own business and is constantly chasing his tail to keep his clients happy. I was told I could bring someone with me to this particular meeting as I would be receiving results. Unfortunately though he stated categorically that it would be very detrimental for him to cancel his meetings that day to go with me. I understand the pressure he’s under but I was upset. There’s no way I would have not gone with him to such a major appointment. However, we did not need to be facing financial issues on top of everything else and that’s pretty much how our life together has always been so I just had to accept it. My daughter changed her work shifts to come with me and I felt better later when she told me that secretly she was hoping her dad couldn’t take me as she really wanted to be there.
The appointments were running behind a bit that day so we had a bit of time in the waiting room. We were both really nervous but had also convinced ourselves that it was going to be good news. It was difficult seeing people leave their appointments though, some looking very worried and one or two actually in tears. We barely spoke to each other before going in.
Finally we were called in to see a doctor. We both said later that as soon as we walked in the room we knew…..we both felt that the first thing she would have said would be that there’s nothing to worry about. She didn’t. Instead she stated that the biopsy confirmed the presence of DCIS (Ductal Carcinoma in Situ) which is a non-invasive breast cancer – a very small, early breast cancer that can be treated successfully. She went on to say that I would need surgery for a lumpectomy. Lumpectomy is also called breast-conserving surgery and is a procedure that removes the breast cancer along with a small amount of the healthy tissue surrounding it. She explained that she would be submitting the referral to my local hospital, The Conquest Hospital in Hastings where my care would be taken over. She was already completing the form and said she would be sending it straightaway. She reassured me that they are all breast surgeons at the same level and I would be looked after well. She asked if I had any questions but because I had been more prepared to be told everything was ok my head was too fuzzy to think straight.
Before leaving the centre, we were handed over to a nurse who I think was partly there to offer a bit more reassurance and also to provide me with some leaflets explaining a bit more about DCIS. This was the start of a collection of a considerable pile of booklets over the next few months!
When we got outside my daughter said “Well I don’t think either of us was expecting that, were we?” I think we were both a bit in shock. There were no tears, just a sort of numbness.
It was then just a case of waiting for an appointment at the Conquest. I received a copy of the letter which was sent from Brighton to my Consultant in Hastings. The letter summarised the findings of the biopsy and the recommendation to undertake a lumpectomy. I waited quite a long while for the appointment to come through but eventually it was booked for Monday 20th December.
My husband took me up to Kew Gardens the day before the appointment. He’s an architectural interior designer and had redesigned The Botanical Restaurant there. I hadn’t seen it since the refurbishment so we went up to the ‘Christmas at Kew’ event and saw all the beautiful light displays then he showed me round the restaurant. It is exquisite and decadent, a huge improvement on how it looked before which was more like a modern canteen. It was a good distraction for me, not to mention a very proud moment.
On the car on the way up to Richmond we were chatting about the appointment and I said that the letter I received stated that the area of concern was 37mm. He said that seemed quite big and I remember saying “oh you know me, it’s probably 3.7mm!” However I checked the letter when I got home and it did indeed say 37mm.
It was really important to me that he came with me to the first appointment with the consultant, not just to support me on the day but so that he could be my back-up to digesting all of the information.
When we met the consultant I was really surprised she said she recognised me (despite me wearing a mask). I had remembered that she had carried out my microdochetomy 13 years previously but I certainly wouldn’t have imagined she remembered my face after all that time!
We got down to business and it wasn’t quite as straightforward as we had expected. Interestingly she mentioned the referral letter that I had been copied into which stipulated an area of 37 mm. However, when she’d received supporting paperwork from Brighton there appeared to be a number of discrepancies. She said that there were a number of areas showing and they had sought clarification on those before proceeding with any treatment. She added that she had wanted to get me in much earlier but wanted to make sure they had all the correct information before seeing me. She works as part of a multi-disciplinary team with other specialists such as radiologists, oncologists and breast care nurses who meet weekly to discuss every patient until they are discharged from their care. The radiologists had apparently made contact several times with Brighton to get a definitive answer regarding the results and we’re eventually told that there was an additional area behind my nipple but they had not been concerned about that. My consultant definitely didn’t seem entirely satisfied with this rather vague explanation and in a very professional and resolute manner told us this. However, she said that she wouldn’t want to do a mastectomy if it turned out not to be necessary so she advised us that instead they could remove the area that was initially identified along with a wide margin in order to determine any extension or spread beyond that area. We were happy with this plan and put our trust in her experience and reputation.
We discussed potential dates for surgery and decided on Wednesday 5th January 2022. She booked me in and I signed the consent forms there and then. There was a nurse present for additional support but I was subsequently assigned a Macmillan Nurse who contacted me by phone later on.
At this point I was feeling as ok as I could be about the situation. I believed I was in excellent hands and just had to get through the next couple of weeks. I had several more appointments to attend before the surgery date. The first was my pre-op appointment. My friend took me and waited in the car as she wasn’t allowed to come in. I was fine with that as I wasn’t nervous. It was just a few assessments and questions.
I was first seen by a nurse who weighed and measured me and did MRSA swabs. Then the first of many trials of extracting blood from my invisible veins! Unfortunately I have inherited this annoying trait from my mum. Out of sheer desperation she once had blood taken from her toes! Put it this way, I am a nurse’s worst nightmare! I remember during my pregnancies the midwives would look at one arm, then the other, before letting out huge sighs of dismay when realising the options were limited! True to form that day my veins would not play the game. She finally managed to get a flow going then about halfway through it just all slowed up and stopped! We did get there eventually. I think it was as much of an ordeal for the poor nurse as it was for me, bruises and all….!
I then had a short wait before seeing another nurse who went through a whole tree of paperwork with questions and advice! She also booked me in for my Covid test which had to be done by the hospital three days before surgery.
I was contacted by my lovely Macmillan nurse who was really helpful and supportive. Genuinely just knowing she (or if not her then a colleague) would be on the end of a phone whenever I needed her was so reassuring. Throughout my cancer journey I would have personally really struggled without access to the service they provide. They are kind, committed and compassionate. It’s an invaluable asset for anyone who has had a cancer diagnosis.
Christmas was okay but inevitably I was anxious. I also had to be very careful about not catching Covid so we limited how many people we socialised with and everyone we did see was kind enough to do lateral flow tests beforehand.
On Thursday 30th December I had an appointment at the X-Ray department. To be honest I didn’t really know what it was for! Initially I thought they were just going to double-check my lymph nodes. Anyway, it wasn’t that at all! I had an ultrasound to check the placement of the marker/clip that had been inserted in Brighton, making sure it matched the previous images. It didn’t take too long and the Sonographer was very gentle and respectful. I would say he was in his early thirties and appeared to be of middle-eastern heritage. He spoke very softly and ensured that I was covered up throughout the process, protecting my modesty in the areas that didn’t need to be examined and he repeatedly checked that I was ok and explained what he was doing. He pointed out on the screen where the marker was so I could see for myself. It makes all the difference when you are treated with respect and humanity, not just another patient on the never ending list.
My final pre-op appointment was a Covid test on Sunday 2nd January 2022 after which I had to self-isolate for three days until being admitted for surgery.
I received a call the day before my operation from a nurse to inform me that my Covid test was negative and I was all set to go.
“Ride on! Rough-shod if need be, smooth-shod if that will do, but ride on! Ride on over all obstacles, and win the race!” Charles Dickens (David Copperfield).
To be continued….
Hoping for a Happy Ever After 