Walking with 'The Breast Cancer Beast'

I am still in a lot of pain in my arms, it’s strange that an area can feel numb but when pressure is applied feel white hot pain, like a million sharp pins and needles. It’s making me nervous of making sudden movements as I don’t know when I will get that sharp stabbing pain.

Despite the pain, I went out for a coffee to meet a friend in town this morning which was lovely. I then needed to call at the doctors for my sick note. It’s the first time in 27 years of my working life that I have ever had to get a sick note from the doctor. I didn’t even know what they looked like. It made me a bit sad, I really don’t want to be that person off on long term sick (especially when I love my job) but I have to keep reminding myself this isn’t my choice.

I had a call with my insurance company at 11am. I worked in financial services for a while and used to sell life and critical illness policies, so I know how important they are and of course have one of my own. I started the claim process as soon as I was diagnosed as I knew it could potentially be a long-winded process and that further down the road, I may not feel up to it. With hindsight I’m glad I did as they asked me so much detail about dates/doctors/appointments and thankfully it was all still fresh in my mind. Because I had the foresight to take out an insurance policy and because I work for a large corporate company (who really look after their employees) I am confident we will manage as a family financially. This takes away one worry during a time riddled with worries and I really feel for anyone going through this who may struggle financially as a result of their diagnosis. Lots of clients I used to speak to about paying premiums for life/health insurance used to always say ‘but I hate the thought of £60 going out of my bank account every month and getting nothing for it’ and I always used to say ‘it’s the one policy you never want to claim on but should always have in case the worst happens’. I stand by that phrase even more now; I so wish I wasn’t having to make the claim but I’m very grateful I can.

I returned to the unit today to have my wounds looked at and the dressings removed. The breast nurse asked me how I was and whilst I was telling her I broke down in tears. The pain in my arms, the inability to properly wash (I was beginning to smell myself) and the difficulty sleeping on my back with the drains was taking its toll. I have to say she was quite harsh with me. She was concerned that I wasn’t moving my arms so much and asked me why, I told her it was because of the pain. She asked me if it was pain or ‘anticipated pain’ at which point I felt like punching her in the face. This was proper bloody pain. She suggested I take Amitriptyline in a low dose which can help with nerve pain and whilst I was reluctant to take more tablets I decided it was the lesser of two evils and I agreed to speak to my GP who prescribed me two weeks’ worth.

At the same appointment with the breast nurse she removed the dressings on both my breasts, so I saw them for the first time in their new state. They weren’t particularly a pretty sight as they were heavily bruised and the nipple was missing on the right side replaced by a fairly red angry scar of about 3-4 inches in length. (It’s a good job I’m not on the dating scene these days which is full of dick pics and tit pics because these babies wouldn’t get me a date!). Having said all of that the surgeon had done a good, neat job and they were healing well. I genuinely didn’t feel that emotional seeing them because right at that moment the nerve pain was distracting me from the fact I’d lost a nipple. It’s funny how even the horrible things serve a purpose!

I left the unit feeling pretty down today. My drains are not showing any signs of slowing down, my boobs have been butchered, I’m in constant pain and I can’t raise my arms above my head. Dave keeps reminding me that it’s only one week since my operation but at the moment I feel a very long way away from the person I was seven days ago and I know that the boys are feeling and seeing that too.

However, as the old proverb says, ‘time is a great healer’ and in that I must put my trust.

I came around to see the face of a lovely smiling nurse who I think was called Michelle (I seemed to remember thinking at the time that she had a lovely face and was very pretty – weird I know). I was a bit groggy and a bit teary which is apparently common after a general anaesthetic and I remember her being really kind to me. I think I was still in the theatre area at this point. The surgeon also came to visit me and told me how everything had gone although I’m not sure I retained much of that information.

The lovely nurse wheeled back onto a ward and into a little cubicle and said to me ‘I’ll get you one of the nice nurses, there are a couple of battle axes’ which made me smile. Almost straight away another nurse (not a battle axe) came to visit and offered me a cup of tea and a biscuit. It seemed like I’d only been there minutes when I heard Dave’s Northern Irish mumbling down the corridor and then he appeared around my curtain – it was so good to see him.

I was pleased to find that underneath my gown I still had my knickers on. During my pre op the week before I had asked the nurse whether you have control of your bladder when under a general and she said that occasionally the bladder does release and there is nothing you can do about it. She told me that if I woke up with my knickers on, I could rest assured that I hadn’t weed myself otherwise my knickers would be given back to me in a plastic bag! I considered it a small victory, even though the male anaesthetist and the male surgical nurse had seen parts of my breasts even I hadn’t.

Next I was put in a chair and wheeled to the toilet (you can’t be discharged until you’ve had a wee). I think it was only at this point that I realised I had two drains. In fact, I don’t think prior to that point I even knew what a drain was, boy was I going to learn! The nurses fetched two material shoulder bags to pop the drains in and sent me off for a wee. Victory number two.

I was then left sitting up and they suggested I slowly put my clothes on ready for discharge whilst they sorted out the paperwork and any medication.

Whilst Dave and I were doing this a lady in the cubicle next door started vomiting and wailing really loudly. General anaesthetics can make some people very sick afterwards and she was clearly one of them. I didn’t mind the sound of her being sick, but the wailing was really getting on my nerves (most unlike me not to be empathetic) and she was dealt with by one of the battle-axes who offered her an anti-sickness injection in her bum. The poor lady was umming and aahing about having the injection between being sick and the nurse basically told her she could continue being sick or have the injection end of. With hindsight had I not been feeling delicate I hope I would have had a little more empathy for her as her post op experience was more traumatic than mine.

I got home that evening around 8.30pm. The whole process from start to finish had taken 12 hours. It felt good to be back in my own home and both boys returned from their activities and friends’ houses around the same time. It was so good to see them too.

I vividly remember Joe sitting next to me on the settee and saying, ‘is that it over with now Mum?’ Whilst I didn’t say it out loud, I thought to myself ‘If only, this is just the beginning.’

Tuesday 24^th September – it came around pretty quickly, probably because it was only 8 days after our diagnosis. You certainly can’t knock the NHS for their efficiency.

It was a dark, wet and miserable day and the traffic was heavy around the hospital, but I did console myself with the thought that it was probably a good day to be inside all day, even if I was about to be butchered! I felt a little apprehensive about what lay ahead but knowing I would be under general anaesthetic, I felt ok. I knew I wouldn’t feel pain and if I didn’t wake up, I’d never know!

I was instructed to go to Coventry hospital at 8.30am to have a wire inserted into my left breast (gross right?). As the type of cancer in my left breast does not show up on ultrasound a thin wire is inserted into the breast to guide the surgeon to the tumour. In this day and age of high tech I have to say I thought it sounded like a pretty primitive method but it’s quite scientific. They insert the wire using the mammogram machine. So basically they sit you in a chair, inject some anaesthetic into your breast, squash it within an inch of its life and then insert the wire. It shouldn’t really hurt (even if it does sound like torture) but the doctor warned me it may be a little sore due to bruising from the previous biopsies. She inserted it and then took several images and then moved it around until it was in the exact position she wanted. Whist it didn’t really hurt it was a strange sensation and when I finally opened my eyes, I came over all hot and then only went and bloody fainted!

The same lady that inserted the wire had done my biopsies a couple of weeks before and I took the opportunity to thank her for being so vigilant that day and thoroughly checking my right breast – if she hadn’t I may never have known it was in both breasts. There are times when just doing your job really well is important – this was one of them.

She also told me that my case would become a study case for teaching in the University mainly because the cancer in the left breast hadn’t presented as it normally does, apparently it normally glows bright on a mammogram and mine didn’t. I am really lucky I did not fall under the radar and I am pleased that my case will be used to train others in spotting this particular type of cancer. You can normally find the good in a shitty situation if you’re prepared to look hard enough.

After the wire had been inserted (hilariously they leave a long bit coiled on your chest under tape) I had to head to the Department of Nuclear Medicine just along the corridor. Here they injected both breasts with a radioactive dye that shows up your lymph nodes. The nurse doing the injections had a trainee with her and asked me if I minded – of course I didn’t, everyone has to start somewhere. The most amusing part of this process was the description of my breasts she gave to the trainee. She said, ‘This lady is a perfect patient for you to watch, she is not so young that her breasts are firm and pert (rude) and she is not so old that they are saggy (better) she sits right in the middle’. I had a wry smile to myself and wondered if that’s what they say about us when we’re there, what do they say about us when we’re not? Although an injection in both breasts sounds awful it was actually fine, she was very skilled, very quick and I was soon out of there with my ready brek glow!

Dave and I had a few hours to kill then before we needed to be back at Warwick for 12.30pm. We went for a coffee in town, well Dave did as I was nil by mouth from 11.15am, and I watched him drink two lattes and eat a blueberry muffin!

We arrived at the day surgery unit in plenty of time and were shown to an individual cubicle where we sat amongst others waiting to have their bunions done, knees done etc etc. It always makes me smile that the medical staff pull the curtain for patient privacy, yet the person next door can hear every word of their consultation.

The first person to come and see me was the surgeon. I thought it was going to be the same male consultant who had given me the diagnosis but apparently he was on holiday (I later learned he was at the World Cup in Japan and I have to say, I’d rather have been there too) so instead I had a lovely young woman. She spent a good 15 minutes with me explaining the whole procedure in detail and making sure I understood clearly what was going to be done. Dave was highly entertained when she asked me to strip off and started drawing all over my chest with a sharpie. I had arrows, acronyms and dots drawn all over the various sections of my breasts. Similar to having a baby, when your lady garden is fair game for everyone to examine, the same can be said for breast cancer. Frankly I’m happy to whop my tits out for anybody these days.

Next up came the anaesthetist, he double checked all the pre-op questions I’d previously answered and at the end exclaimed ‘you’re a picture of health’ to which I retorted ‘well I was until about a week ago’.

Finally, a young theatre nurse came to escort me to theatre. To make conversation on the walk down the long corridor I asked him how many theatres there were in day surgery to which he replied ‘three’ just as he pushed open the door to ‘theatre four’, another wry smile.

I got onto the bed, the anaesthetist said the words ‘sharp scratch’ as he inserted the cannula into left arm and then he held a mask close to my face and told me to breath normally.

That’s the last thing I remember.

Monday 16th September we were told the surgery I needed was a bilateral lumpectomy (basically removing both tumours from both breasts but at this stage not a mastectomy) – in this cancer game you learn to take the small victories as they come.

We were told the operation would be in 3-4 weeks, so we went home on the Monday and started to process the news and organise what needed to be done, including telling people.

I was busy working at my laptop on Wednesday 18th, preparing my team meeting, when the phone rang. It was the hospital ‘We have a date for your operation Mrs Blackwood, it’s next Tuesday 24th September’ – Holy shit, another smack in the face from Tyson Fury – I wish he’d bugger off. The date was exactly 8 days after we’d received the diagnosis.

Obviously, it’s fantastic that the NHS reacted so quickly and booked me in but to be honest the speed of it floored Dave and I even more than the news itself really. Was this just efficiency or was this more serious than either of us had really contemplated? Sometimes you just can’t stop your mind from working overtime.

I needed to let work know, tell the kids, Dave needed to book the 24th off work and we needed to sort the logistics for the day of the operation itself. I also had work that needed to be done.

We decided to tell the boys on Wednesday night. Since the news I had felt a knot of anxiety in my stomach pretty much constantly (and generally speaking I’m not an anxious person) and I attributed this to having to tell Max and Joe. We all know as parents that we’re probably messing our kids up one way or another, even if we’re trying our best not to, but I don’t think any parent ever wants to deliver news that is going to upset their equilibrium and that is difficult for them to understand.

I asked them to sit down as I needed to talk to them. They both say at their regular places at the table and I said, ‘I’m afraid it’s not good news boys’ to which Joe piped up ‘Is it something we’ve done?’ (bloody hilarious that they immediately think they’re in trouble) we laughed and said, ‘actually boys this time it’s not!’. Max then said, ‘Is it Grandad?’ (my Dad has been ill and was still in hospital at the time and I probably hadn’t realised Max had been worrying about him). ‘No, it’s not Grandad’ I answered, more relief from them. ‘I have Breast Cancer’ I said. I told them it wasn’t going to kill me (I know there are no guarantees, but I was prepared to make a guarantee for my boys’ peace of mind) and that I needed to have an operation to remove it and treat it.

Joe immediately burst into tears (he feels in the moment and wears his heart on his sleeve – just like me) which made me cry and then Max cry. We had a group hug which made us all feel better and then we talked a little bit more and I told them I would answer any questions they had. I felt relief when I’d been straight with them, whether we liked it or not, we were all in this together and would experience it together.

Pre-op was late Friday afternoon, a pretty simple process but enlightening as well. The lovely nurse who looked after me spent more time chatting to me and putting me at ease than she had an obligation to and I really appreciated it. The more time I spend with nurses the more I think they should be paid double what they are. She told me that afternoon ‘as far as cancers go, you’ve got one of the best’ (I’ll take that, another small victory) and by this she was referring to the amount of money spent on research and how successful treatments were these days. I agree with her, I would prefer this than brain cancer or bowel cancer.

It’s amazing how, when facing something bleak, you find the ability to seek out the positives and crack on.

Monday 16th September 2019, a day that will probably be etched onto my average memory for life.

My friend texted me the night before to see how I was feeling about getting the results and I said to her ‘it will go one of two ways. Relief and life will go back to normal, or shock and life will never be the same again’.

Our appointment was at 3.30pm so we made arrangements for our youngest to be collected from school under the ruse of a play date – no need to worry anyone just yet.

When it was our turn to be seen we were called into a room with the consultant and a nurse. He was a smartly dressed man in his mid to late fifties (at a guess) and he carried himself with confidence. He seemed quite chirpy when he sat down and then with no preamble said ‘We have your results Mrs Blackwood and we have detected cancer in both breasts’ – WHAM that was it, like a punch in the face from Tyson Fury! Life would never be the same again.

Dave and I both said afterwards ‘Christ they don’t sugar coat it do they’ but on reflection how can they? This is their job, they deal with it every day, they are experts in it and they do not have the time to pussy foot around. It isn’t the consultant’s job to hold your hand and offer tissues (the nurses are fantastic at that btw) it’s their job to impart information and decide which path your treatment is going to take.

We spent about 15 minutes (I think) in that room with him during which he explained my individual case. I have a different breast cancer in each breast – I never have done things by half! The one on the left is apparently quite a rare type Mucinous Carcinoma of the Breast it is a 10mm grade 1 tumour. The consultant got quite animated about this one and told me that in his 23 years as a consultant he had never known anyone have any further issues with this kind of breast cancer. Result! This is one piece of good news in a sea of shit.

The one in the right breast is a more common type a Ductal Carcinoma and the tumour is 15mm and a grade 2. Both cancers are invasive meaning they the cancer has ‘invaded’ or spread to the surrounding breast tissue. Not so good news.

The consultant left us, with our short-term future blown apart, and a nurse took us into another room. She spent what felt like an age going back through the type of cancer I had, possible treatments, next steps and answering any questions we had. She imparted a huge amount of information for us to process so much so I felt the need to take notes! She took time to find out lots about me and our family asking about hobbies (can’t imagine they’ll be top of my to do list for the next 12 months!) and the boys. One of her questions was ‘what is your support system like?’ to which Dave answered, ‘this is as good as it gets’. I can always rely on Dave and his dry sense of humour to lighten the mood – let’s hope this gets us through the next 12 months.

I did cry a couple of times during the whole consultation, the shock, fear and sheer bloody magnitude of what we were facing overwhelmed me.

As we walked out of the hospital trying to process the news, my overriding thought was ‘how will this affect Max and Joe?’

We had a fabulous week in Cyprus and returned with about 10 days of the school holidays left. During that time Dave and I had a weekend away in Marlow visiting the Hand and Flowers Pub (his 50^th birthday present from me) and then we took off to Wales with the kids. My youngest Joe has always wanted to do ‘Velocity’ the fastest zip wire in the world, but you must be aged 10 to do it so we bought it for him as a 10^th birthday present. I have always wanted to climb Snowdon so it made sense to do both at the same time.

Funnily enough I booked the trip to Wales whilst in Cornwall and after I’d found the lump. Whilst I didn’t know at that time how things would turn out I think it just made me more determined than normal to ‘live life to the full’.

Snowdon and Velocity were amazing and we had 2 wonderful days in Wales before the kids went back to school. On the day they went back I had my biopsy at Coventry University Hospital.

I had to be there for 8.30 and was seen promptly. I could go into detail about what they had to do, but I won’t, I don’t think you need to hear it. I was there for them to find out what the shadow was on my left breast and hoping to eliminate cancer. The doctor looked at my right one for comparison but whilst doing so saw something she wasn’t happy about. I asked her whether I needed to prepare myself for what she’d seen but she understandably didn’t commit to anything she simply said ‘I don’t know because I don’t know what your norm is’.

They spent two hours taking images and samples from both my breasts via ultrasound and via mammogram. It didn’t really hurt, but it was uncomfortable, highly invasive and undignified, oh and the noise of the biopsy instrument sounded like a stapler! Having said all of that, the three ladies that did the procedure were amazing. One held my hand all the way through the ultrasound, a simple thing that meant so much. For someone who is a bit of a wimp like me, I did pretty well. I stayed still and quiet so they could do their job but when it was all over and I opened my eyes I burst into tears. I think it was a combination of relief, fear and being overwhelmed.

They took me to a private room and brought us tea and biscuits whilst I gathered myself and told Dave all that had gone on (he’d been sat in the waiting room for the full two hours). Once again it reminded me that we are so lucky to have such a fantastic health service and also how grateful we need to be for everyone who works within it.

They told us the results would be available in about 2 weeks.

The waiting game continued……

 

I think we were both more nervous going back for this second ultra sound than we were the first time. Thankfully parking at Warwick was fine (it can literally be the most stressful thing about going to that hospital) and we dashed down the corridor to the Helen Clark suite.

We were immediately seen and the consultant who explained that he could see a mark on my mammogram that he wanted to investigate further but he couldn’t see it on the ultrasound images. He wanted to do another ultrasound to see if he could find it. Out came the jelly (and my boobs again) and he looked again but still couldn’t find it. He concluded that if it couldn’t be seen by ultrasound it was very likely something benign like a fibroid that looked a lot like breast tissue and therefore couldn’t be seen via ultrasound. He then said that it was probably safest to get it checked out which meant a biopsy. This needed to be at Walsgrave as it was likely that it would need to be done via mammogram and they didn’t do that at Warwick. He assured me that my case would be discussed by the team on Monday afternoon and we would then more than likely be invited for a biopsy at Walsgrave. You know when you find something funny in a not so funny situation (think it’s probably nerves) well Dave just kept saying ‘your tits are going to be discussed at a meeting’ – which kept us both amused.

So we left the unit for a second time, considerably less elated than earlier in the day but still thinking the whole process was just precautionary and it was just a case of eliminating cancer from their enquiries.

It was August the 9th and we were due to go to Cyprus on the 18th August to meet friends, so I decided to put this to the back of my mind and carry on living life to the full……just in case.

When I arrived at the Helen Clark suite in Warwick the first thing I did was look around the waiting room, there were ladies of all ages and profiles just reconfirming how indiscriminate this disease is. You are made to feel very at ease immediately in this unit. There were good quality magazines to flick through and distract you (rare these days and not a ‘People’s Friend’ in sight) there was a coffee machine and even a small garden area. I don’t think any of these things help on your first visit (too nervous) but I’m sure give comfort if you are a regular visitor. Thank you cards adorn the walls and shelves, a symbol of hope for all the unit’s current patients.

I was called into one of the little side rooms to have my first examination by one of the consultants. I didn’t feel awkward as he examined my breasts, I was just keen to find out what he thought the lump was and saw this as a means to an end. One thing that struck me was that the highly qualified, professional male consultant had to have a female nurse in the room with him whilst the examination took place, it just reminded me of the world we live in and how exposed we are these days to accusations. I guess it is also to help women feel more comfortable by having a friendly female present.

To my immense relief the consultant told me that he thought the lump was a sebaceous cyst which he said could have been caused by a blocked sweat gland (I blame that on spin classes, I knew deep down they weren’t good for you). He told me I would have an ultrasound and mammogram as part of the thorough checks. I had both procedures, neither of which bothered me. I think the sheer relief of thinking the lump was benign made any discomfort from the mammogram tolerable. Actually, for someone who is a bit of a wimp having a mammogram really didn’t bother me at all so don’t ever let the fear of this prevent you from having your breasts checked.

The results were looked at, a discussion was had about removing the cyst under local anaesthetic and we were allowed to leave. I can’t tell you how relieved Dave and I were when we walked out of that suite. We decided to have a drink in the hospital coffee shop to gather our thoughts and we both remarked how lucky we were and acknowledged that others would undoubtedly leave that unit today with their lives changed forever.

We headed home to our office in the cellar and both started working away on our laptops, making up for lost time, heads down, immediately back into the everyday grind. Within about half an hour of us being back the home telephone rang and I dashed to answer it presuming it was my parents (who else rings on a landline these days?).

It was the hospital.

‘Hi Mrs Blackwood, we need you to come back in straight away, the consultant has had another look at your mammogram and has seen something he needs to investigate further and needs to do another ultrasound’

Shit.

I’d love to be able to tell you I found out about the cancer because I checked myself regularly but it’s really not the case. I did check myself, every now and again in the shower, but like most people wasn’t really sure what I was looking for but presumed I’d know if I found it.

The truth is I only found out about this cancer through pure luck/good fortune/fate….whatever you believe in, but my case is probably unusual, so please do check yourselves every month and don’t ever delay your mammograms.

It was the first week of the school summer holidays and we had just arrived in beautiful St Ives. It was our second night there and I was getting changed for bed when I suddenly noticed a pea=sized hard lump on the edge of my left nipple. I had never seen it before and it was as though it had literally appeared overnight. I remember clearly dashing from the bedroom to the lounge, boobs swinging, pointing to my breast and saying to Dave ‘What the %&£$ is that?’

I was immediately filled with panic and went to see a GP in St Ives (I think they only gave me an appointment because I started crying when they asked me what was wrong). The doctor I saw was lovely and she advised me to see my own doctor as soon as I returned home.

It was difficult to put that to the back of my mind during the rest of our holiday, but I did and had a great week. I am not a worrier by nature and try to work on the basis of ‘no point in worrying about what you don’t know’ – it worked that week, but let’s hope I can keep it up for the next 12 months.

I visited my own GP on my return who advised that I get the lump checked out and referred me to the Helen Ley unit at Warwick Hospital. On the worry front I was still doing ok until the appointment letter turned up (about a week later) with a leaflet about Breast Cancer and then I think the reality of what we might be facing hit home. I allowed my head to consider cancer, I had to, just in case. When  I did consider it, the only thing I could think of was ‘I have to live at least 10 years for my boys’.

The letter said to leave 2 hours for the appointment and as it happened it fell on one of my work days (I’m part time and work Wednesday to Friday each week). I didn’t want to delay in any way so accepted the appointment and had to let my boss know that I would be ‘off grid’ for a couple of hours. He was great and we both acknowledged that it was ‘probably precautionary’ and we were ‘sure it would all be fine’.

Little did we know……..