In January 2018 I had a follow up appointment with my breast surgeon. This isn’t my original surgeon from North Manchester hospital. I happened to miss 2 appointments possibly for a mammogram (maybe 4 years ago rescheduled them due to one on my daughters birthday and some other issue probably to do with chemo at the time) to which I was told that I couldn’t have another appointment and would have to go through my GP surgery again to refer back into the system.
I didn’t go back.
I ended up with a new breast surgeon but only due to my sternotomy surgery back in 2016 as the oncolplasic surgeon worked with my cardio thoracic surgeon when I had the sternum removed and replaced. She was there to make sure that the LD and implant was ok, move it out of the way if necessary (in surgery) and then make sure the pectoral muscles were there for the thoracic surgeon to use when he put them on top of the hard composite plastic which was my new sternum. This was so there was no hard plastic just under skin and I had some “cushioning”. Job done.
In January 2018 the oncoplastic surgeon give me a surprising option after giving me another yearly check-up. With the sternum surgery, 2 years later, it had caused my left (normal) breast to sag more due to muscle tone. I also always had a very concave area on the right side under my clavicle due to all the breast tissue that had been removed 12 years ago. So the surprise was, without hesitation, she offered me the option of having lipofilling in the right (breast cancer) side (there was a concave area and this was to fill some of it) and to have an uplift on the left (not cancer) side. I was quite taken aback by this. I have secondary breast cancer and she of course knew this. But I was NED and had been since the surgery. I didn’t want to take a quick random decision, so I asked if I could keep another appointment with her for a year later and then think about this. I was getting more and more disappointed with the left side, it was now bigger than the right and it also caused problems as cup sizes were different. Bikinis I had to alter on one side (if it was a bra cup) and things looked more uneven.
I attended my appointment year later in January 2019. I had had a full year to think about this and as time went on, the more I felt I wanted this done. I had been stable for another year and attended the appointment and said I felt it was a good time to go ahead. Again, no hesitation on her part due to my secondary breast cancer but she knew I was stable, so she was happy to help.
I was put on the waiting list for an appointment. A cancellation came through in July but I had to cancel this due to an anomaly on a scan (which was thankfully all ok) and our family holiday then took priority. When I arrived back from our summer holiday, I had another call offering me a cancellation appointment. An agreed date of the 17th September and my Oncologist gave me the go ahead. Preop done and was booked in for a day case.
I decided to have this done due to 3 answers to my questions below: –
1. I didn’t have to come off any treatment
2. It was quick surgery (around 1.5 hours)
3. I could come home the same day
I knew all the pros and cons but felt good to go ahead to have this done.
Jeff had dropped me off and was no point in staying. I had my quick pre op checks with the nurse, anaesthetist and surgeon and saw on the table I was sat next to it was broken on the corner and someone had “fixed it” with actual sticking plasters when you cut yourself. I could see the headlines “NHS – held together with sticking plasters”…
I was the first on the list but didn’t go for surgery until around 11am.
I chatted to a very nice lady who was having an operation on her thumb. She explained how it had caused her so many problems as she sewed and sewing use to be her job. She couldn’t do what she loved to do and I completely understood that and had empathy for her. We got along so well, chatting before surgery, she also had a heart problem so had to have a beta blocker to help. She asked what I was having done and was quite shocked to hear that I had incurable cancer. She said “listen to me going on about my thumb when you have all this to deal with”
“We all have our problems” I said, and I genuinely meant it, my issues were just like hers, they stopped me from doing things I loved to do. I was grateful for the conversation and the chat, I really hope she could start doing the things she loved, having time with her grandchildren whom she also looked after and showed them how to sew and bake. Its amazing how much you can talk to someone and find out about their life in a short amount of time.
The nurse called me and made sure I took my locker key with me to the anaesthetic room where I was asked to lay on the bed. Surprise they couldn’t access a normal vein so told them to access my wrist. This happens all the time now and I am far from getting use to a needle in the wrist but needs must and you grin and bear it. Quick check with saline that it worked and off we went, hooked up to the drip I was wheeled into the operating theatre and they had arm rests so you looked like you were lay like the “Angel of the North” on the bed. They needed to get in under my arm on the right side and access the whole breast area easily. I had also asked for the LD tendon under my arm to but cut due to spasms in my breast from the surgery 12 years ago. I’ve lived with the muscle spasms for 12 years and they have proceeded to get worse over the years.
They buzz around you from anaesthetist, surgeon, registrar, nurse etc etc and next was the registrar who hooked me up to the drip and had a look at my hand “you have nice nails” which I though was a very perceptive thing from a man “even my husband doesn’t compliment me on my nails” and here I am on a bed ready to have breast surgery. I always have a giggle and a joke, it’s the way I get through it and take my mind off really what is happening. So I mentioned about how perceptive he was and unlike my husband… *eyeroll
They were ready, oxygen mask on and whooo you are going to feel woozy – yes im feeling that now. I really tried hard to keep my eyes open and try to win the fight and wanted to hear them “crikey this one needs a tranquilizer like an elephant” but I was eyes shut before I could count to erm probably 5…
It always seems like a millisecond later that you wake up. And there I was in recovery. Thankfully no recollection of anything. The nurse came round and asked if I wanted a drink – drink had, can I have something to eat, yes she would get me some biscuits soon. I had a sneak peak at my left breast, wow, couldn’t believe what they’d done. It was perky like my other breast with the implant. But ouch, I just felt this hard lump on my stomach after having a look at the lipofilling and I knew instantly it was a hematoma. I told the nurse and she immediately went to see one of the surgeons who was part of the team and he came checked it out and said “this may hurt a bit” and pressed down on it and massaged it to ”disperse the blood”. After a minute or so he strapped my stomach with what was like large kineto tape and said to keep pressing on it as it needed pressure. So I did. Apart from that I felt fine.
My surgeon came to see me about ½ hour later and I was fine until she left, then I felt all rather odd… called a nurse over and my BP had dropped low so they lay me down.
They rang Jeff to say he could collect me and eventually got me into the area where you are collected by a relative and it happened again, BP low and I felt like I was going to faint.
½ hour later I said to let me have a walk about. They escorted me to the loo and back and I felt ok, finally Jeff could come in after waiting for about 2 hours longer than he should have. I don’t seem to be a good patient to lie down and do nothing! There’s a surprise.
Everything went well. I just had to wear a supportive bra that I had bought. I had literally no pain, just some twinges an honestly didn’t even need paracetamol or ibuprofen but took them just in case. No codine or other extra strong pain killers needed. I must have a high pain threshold or maybe it doesn’t hurt? But it looked like it did… 3 days later the bruising on my stomach was unbelievable and it looked like I had a pair of purple shorts on. The bruising had travelled down my thighs. I couldn’t drive for 2 days and then actually getting in a car was sore but it all starts to get better a few days in. Still no pain though just some discomfort. I also made sure I had supplements to help to reduce inflammation and help healing. I do heal quickly.
Before – LD tendon cut and nice bruising – lipofilling done (ouch)
Friday night, 3 days later, I was asked to attend an award ceremony at Oldham Civic Centre which was for Sporting achievement. Oldham Sports had asked me to attend and do a short talk but I had told them I had just had surgery and I may not attend (they had no idea what I had done until now!). Anyway, I felt OK enough to just go to do my talk and then I could get home. I got there and thought “I don’t want to do this”. Well I’m here now so I may aswell do it I thought and parked the car and met one of the organizers outside. I told him I would just stay for the talk and probably go home (I didn’t explain what I had done) Alan and Gaynor from U Projects were at the award so I went and sat gingerly with them, it was the first time I had jeans on and wore “normal clothes” since my surgery.
Alan’s daughter was there and Gaynor had showed her the photos of what I had done and couldn’t believe I looked ok!
We had a chat and they did a physical activity drumming event and then a game where people stood up and walked around their chair (again I did this gingerly as I didn’t want to bang into anyone) there was probably around 300 people in the room but it was confined to your group table.
I was on next and my name was called and I went up to the stage, up the stairs to the lectern. Lights shining in my face I couldn’t see anyone apart from the front tables, so it was good that I didn’t feel like I was talking to such a large room of 300 people. Talk delivered I said thank you and turned to the host to walk down the stairs and he said “look you have a standing ovation” I just couldn’t see and was a bit taken aback when I put my hand over my eyes to block out the light to see everyone stood. I was touched and went to sit back down and they said “no, no stay there, don’t go anywhere” I was a bit of a rabbit in the headlights when the Mayoress started walking up the stairs, I said to the host “what is happening?” and the Mayoress said that she had an award for me. Couldn’t believe it, I really had no idea that this was happening. She came over and said a few words about what I do with abcd and how inspiring and then handed me a lovely glass award.
On stage presenting before I knew I was getting an award – being presented with the award – the group photo – flowers and my award
Wow – I stayed for a while longer and they also presented me with a huge beautiful bouquet of flowers. I sat having my photo with them as it was way too heavy to hold unsupported due to the surgery I had. I stayed for a while and left at the end of all the presentations feeling quite overwhelmed. My trousers were wet on the waist band and all I could think was that the area where I had lipofilling was leaking! Gaynor eventually realized after carrying the flowers to my car with me that the flowers I held had leaked so thankfully no leaky lipo. Phew.
This was what was behind the smile – my purple shorts (nothing wrong with a little oversharing between friends?!)
Everything went ok until Sunday morning. I got up, went to the bathroom and coughed and felt a twinge of pain on the reduced (non cancer) side at the top of my breast area, ouch it felt sore but I went downstairs, had my breakfast and started working on my laptop. ½ hour later I felt this weird sensation that I had to go to the bedroom and take my top off. OMG my breast was near double the size that it was. Jeff and Regan were out together and Faron was sleeping out. I immediately rang Jeff and told him to come home. I had less supportive sports bra on so rushed around the house and rang jeff looking for the tight sports bra which I thought had been washed and was back in my drawer. Clothes and washing was dragged out of the washing basket and drawers to frantically try to find the bra, all the whilst I was trying to compress my breast as it felt it was getting bigger and bigger. Bra found I put it on. There was a stingy feeling from the top area which I felt when I coughed. I immediately knew again that this was a hematoma or a seroma. I needed to go to hospital. I rang them after finding the number and they said to come in. Jeff rushed home and I stood waiting outside. Regan was crying in a panic because we were in a panic and we had to leave him at home… alone. My daughter was at our friends with their daughter from a sleepover the night before. Jeff rang to see if they could pick Regan up and take him to their house. Thankfully they did. It was a long journey to Wythenshawe hospital. Jeff dithered saying we should go to Oldham or Ashton but I knew I needed to be at the hospital where they had done the surgery.
Every bump and bounce in the road hurt and I held onto my breast through my coat. I had taken a towel with me aswell as I knew Jeff had a hematoma years ago on his knee after surgery and it burst. I remember him telling me it was like a blood bath. All I could think about was this was what was going to happen due to the stitches and its going to be a mess. Why did I have this done? Thankfully ¾ hour later we got to A&E and Jeff dropped me off whilst he parked I ran in and went straight to the back of the check in desk to tell someone what had happened and I has already rang through as I literally couldn’t wait (still trying to hold onto my breast as if it would stop it bursting).
She got me to see triage soon and they took details and rang the plastics dept to come to have a look. It took 1.5 hours for someone to turn up. Meantime I had to get Jeff to lie the bed down as I went funny and was going to faint (guessing my BP had dropped) but no one had even taken my BP or even looked at me since I arrived.
The surgeon on call finally came to see me and asked if my nipple had been that colour long – oh no, am I going to loose that or my breast? – Fear ran through me “why the hell did I do this?”
Thankfully they transferred me to the plastics dept and I just had to wait for them to wheel me there.
The pain had subsided so hopefully the leak must have clotted and it wasn’t filling up any more.
On the ward Richard the registrar came to see me.
“Jo what’s happened?!”
He checked me over and confirmed I was right. They couldn’t leave it, it needed surgery that night. Thankfully I hadn’t had anything to eat since early morning so I was prepped to have surgery. He said that I would have to have the blood removed and then it cleaned and washed out. Then sew it all back up again.
I went down around 9:30pm got a line into my wrist (again) and had the mask on my face and was under and woke up in recovery and after some toast and a nice cup of tea I was transferred in a wheelchair up to the ward. I had a sneak peak again at my surgery and it looked fine and probably a little smaller than it previously had which made me wonder if I hadn’t had a small hematoma already there. Had a terrible night sleep with 2 older women snoring around me and then observations done with a “big light on” and talking loudly…
I woke around 7am, had some porridge and a cup of tea. The team came around and saw me and said that everything had gone really well, so I was fine to go home.
I was glad to get home in the afternoon. I was anaemic due to the blood loss so I had 14 days of iron tablets to take. I felt pretty tired and had this buzzing noise in my head aswell as my heart rate was racing. Seems like its typical signs of anaemia. I was certainly more fatigued than I had ever been. As the days went on it improved with the tablets. And this is the amazing result! (I’m way past caring about oversharing).
A huge thank you to the team and I’m thankful that I’m not seen as someone who is incurable so “what’s the point of doing this surgery?” It’s given me back more quality of life and I feel better having had it done. The spasms are near gone, just have the odd few. We will see when I up my exercise. But its made a huge difference for me. Recovery has been ok and even though I had the emergency surgery it turned out really well and im very pleased with the result, everything feels symetrical again.
I had thought that surgery would all go fine and I would be well enough to attend ESMO in Barcelona. Unfortunately, with the haematoma blip this just wasn’t possible and the “risk of death” through flying after an operation so soon made it a definite no. So I had to suck it up and resign myself to the fact that I wasn’t attending this year. I thought that the patient story book I was producing was going to be released at the event so that was disappointing me. It turned out that this didn’t happen due to a change of sponsor who was supporting the printing, so I guess I wouldn’t have missed anything anyway.
Breast Cancer Awareness Month
It’s been a busy Breast Cancer Awareness Month and we, METUPUK, have been campaigning for awareness of secondary breast cancer. People don’t die immediately from secondary breast cancer once diagnosed, they are “busy living” and many living well enough to even have breast surgeries that they never though they would have as they sometimes feel written off by the system being an “unsurvivor”…
So our campaign raised awareness of SBC and nearly 35,000 saw the post on facebook and on twitter the campaign had over 16 million impressions! Not bad going for raising awareness. We also shared the secondary breast cancer infographics that NHS England are signposting to (here’s the link to the infographics on my website) Thanks to everyone especially all the METUPUK people who shared their own stories and this. We are a great team!
The #BusyLivingWithMets campaign and reach
Thank you also to the team of people who continue to look after me and strive to give me a very good quality of life and make me feel like a normal person, not just someone who is going to die, but someone who is #BusyLivingWithMets. Someone who can continue to work hard, contribute to society, support my family and more importantly – live.
Not bad for someone with an incurable illness who’s just had 2 surgeries in the last 10 weeks I have additionally:-
- Completed a patient story book (imminent launch!)
- Launched the METUPUK web site on secondary breast cancer day 13th October 2019 www.metupuk.org.uk-
- Organized the last retreat in October 2019 and supported 10 breast cancer patients with motivational exercise
- Applied for a large funding grant for 3 years of support
- Supported a METUPUK campaign to bring awareness to secondary breast cancer #BusyLivingWithMets with over 16 million impressions on twitter and nearly 35,000 reach on facebook
- Spoke at 3 conference
- Attended the GM Cancer conference as an exhibitor with abcd and METUPUK for 2 days
- Chaired a panel at the 2 day NCRI Glasgow conference
- Attended ABC5 in Portugal
- Received another award from Inspiring Women Changemakers “Heart of Gold” award
- Appeared on This Morning and the damn bell debate rings on…
Conference for GPs talking about support for cancer patients, sign posting and social prescribing, sharing the infographic info and how exercise helps patients.
Radiotherapy conference in Manchester
Welsh Secondary Breast Cancer conference with my friend Carolyn Gammon fellow patient and METUPUK supporter
October abcd retreat – another success
Oh the appearance on This Morning and the bell…