I’m sure that there are many answers to how you dealt with lockdown and myself? A few weeks ago I posted on my personal facebook account at how I loved lockdown because it was quiet and our family was together. It felt like the world had stopped and took a breath with the beauty and nature you could see around you. The quietness without cars or people rushing to work. Jeff had to be furloughed as I didn’t want any risk of him being at work because of me living with secondary breast cancer and I took the children out of school a week prior to lockdown as a precaution as being at school I didn’t want them to bring any virus home. So we did like many of my friends with cancer and hid away from the world. We did go out once a day, every day though for our own mental health for a family walk usually dragging the children away from social media. That was hard.
It would have been bliss apart from the reality. I’ve hidden a lie. I lied that I was OK because I wanted to deal with the personal trauma in my own way. On my own terms and I had to because I didn’t want to tell my children until an appropriate time with the isolation of lockdown for them both, GCSE’s for my son etc all played a part in deciding to delay this.
My reality on the 2nd April I was at The Christie having an MRI to my brain. I wasn’t really worried but my Oncologist thought it would be a good idea to check. And after all around 50% of HER2+ patients will metastasize to the brain so I was a “just in case”. All done, I was waiting for the radiologist to come to get me as they “just needed to check something” 45 mins later I asked what was happening and they asked me to go wait in a side room as someone was coming to see me. Panic. They asked if I wanted a cup of tea. The warning sign, tea. Panic. The fear had already hit being escorted into a room and I sat there saying “oh shit” texting 2 close breast cancer friends whilst I was on my own, tears falling onto my face mask on. Why me? Well I guess the question is; why not me if 50% will eventually get brain mets? I knew years ago that this would possibly be my fate. My problem with all this is that in the USA I believe all HER2+ patients are scanned yearly to check on brain mets. In the UK we are not and this then can mean that it is picked up later and at a more serious stage. Thank goodness that Dr G was on the ball. Patients are being failed with the knowledge that all research knows this fact. Oncologists know this fact.
I heard Dr G on the corridor ask which room I was in. He came in “Jo they’ve seen something on the MRI its a small tumour, in the cerebellum” and whatever he said next it didn’t really process but tears came and I just remember him saying “I’m sorry but I can’t hug you” and we walked out of the room, sanitizing our hands, walking a distance apart. We were talking and I was asking a few questions I can’t even remember now. He also said I wasn’t allowed to drive. “for at least a year”. Bang goes the independence. I’ve never felt so alone in a clinical setting. I walked out with another fucking life changing diagnosis…
Aside from being told you have secondary breast cancer which is pretty fucking shit enough in itself. To be told you have brain metastasis or brain mets for short (secondary breast cancer in the brain ie breast cancer that has travelled to my brain – this is NOT the same as a primary brain tumour) is horrendous. I knew the symptoms with the infographic of course. I created it FFS! All thoughts going through my mind. Friends who had it prior to me who died of it. How have I not noticed? Because the symptoms were very slight and apart from walking into doorways they have basically been the same side effects as a tablet called letrozole I take daily, causing some slight dizziness, not really any headaches, very occasional. I had a car crash in February and had neck issues (I had whiplash) and these were related to that not to brain mets. Of course the whip lash hadn’t caused this but it kind of hid symptoms a little? Delayed me mentioning it?
Where it is located causes balance problems and that’s all I’ve seen; but for a few years I have had similar symptoms and vertigo due to inner ear issues and the medication. I was advised it doesn’t cause fits as it’s relatively small. It’s 1.2 cm.
So here’s where I’m looking at the positives, as said, it’s small, there was no swelling or oedema and they said they could treat me with SRS – Stereotactic Radiotherapy Surgery (targeted radiotherapy). And I know you can’t compare to someone else as a diagnosis is so individual but of course its human nature you do. I just hope I’m on the tail end of the curve… We all need to be on the tail end of the curve.
I walked to the car where Jeff was waiting to collect me and had to tell him this news, news he really wasn’t expecting. I had no chance to speak to him prior to being told and didn’t want to ring him. I was in shock and stunned. It was a long drive home… in somewhat silence. Crying, anger, rage, worry, many emotions. When something is on my mind I don’t talk I think. I have a million and one things going round in my head and scenarios and thinking here and now and further into the future. I decided to try to keep this thing under wraps as long as possible.
Things moved fast and I had to see Dr McB at Salford Christie unit whos the head of neuro there. I know McB – she won’t know me of course – I took my Mum to see her 11 years ago when she was diagnosed with a lymphoma in her brain. She was her Oncologist. She survived 3 months before she died in July 2009. It was the most devastating time of my life, I still grieve for my Mum. So as you can imagine, it wasn’t an easy appointment having this going round in my thoughts and also being there all alone. No one to hold my hand. No one to turn to to say “what else do I need to ask?” Jeff was sat in the car park waiting for my return after dropping me off at the door.
2 weeks later I had another MRI and CT scan and then the next day I had another scan which both were put together to create a 3D version of my skull and brain. We had to leave the children at home and tell them more lies as to what was happening. And we were in lockdown. It was so hard but it was necessary. I didn’t want fuss, I wanted to do this in my own way. A week later I attended to get the radiotherapy mask to be made. I had one of these created when I had shoulder radiotherapy so I had an idea what it was like. The hot plastic was tightened across my head and I had to stay like that for around 30 minutes until it hardened. You have to have near zero movement with the mask. The next day I attended and they used SRS to target the brain met. I kept my eyes closed (I couldn’t really open them with the mask on) and as still as possible breathing slowly whilst the machine moved around my head which seemed to zap in maybe 8 different places. All this going on with music on in the background.
And that was it. I had to take steroids’ I think I had started them the day before SRS and then continue for another 7 days with a gradual reducing dose. I was glad to get off the steroids they make you feel absolutely shit but on the day after I finished the course I was really poorly with a headache and being sick. I didn’t ring the team until the next day which on looking back was rather silly as it could have been a bleed on my brain or anything but thankfully it wasn’t. Due to feeling ill on the day, I went to bed with a hot water bottle. In the evening I woke up and decided to have a shower. On removing my tshirt I saw a huge blister on my right breast reconstruction. After wondering how I did it I must have slept on the hot water bottle and due to my reconstruction side the skin is very thin and it caused a burn.
That caused a huge problem – I didn’t know it could burn my skin due to the lack of feeling in the breast area. A few days later I was in touch with the GP as I asked them to give me antibiotics just in case of an infection. They did and then a week after it burst. It was healing OK but 5 weeks later and to cut another long story short had to get in touch with my breast surgeon who put me on strong antibiotics for a week as it had become infected and 24 hours the infection was worse. The surgeon told me if it didn’t go better I would have to have the implant out until it healed and would have to have the implant back in months later. Not great news and due to lockdown Jeff had to clean it at home and occasionally get it dressed at hospital and this went on for 3.5 months. Another added problem. Good news it’s healed and I can finally leave it without a dressing on it.
Back to the SRS – I had slight hairloss around 4 weeks later which were round circles in my hair and the more I looked the more I found them. Jeff told me he couldn’t see them, but I could. Being in lockdown I cut my own hair so again I could keep the secret to myself. I had a COVID comb over…
In between this, I had a biopsy as the previous scan had come back that I had some nodes which looked suspicious. Well, 17 were cancerous. I was already scheduled for this surgery on the left axilla (under arm area) to remove all these lymph nodes. The surgeon had said if the burn didn’t go better he would do the two surgeries together. Of course, I really didn’t want this and thankfully as previously said the antibiotics worked and the burn started to heal.
On the 27th June I went to the Spire private hospital in Didsbury which was set up as an NHS “COVID free” clean hospital. Myself, Jeff and the children had to self isolate for 2 weeks and I had to have a COVID test 2 weeks before and another test 3 days before to make sure I was safe to have surgery. Another strange day with Jeff dropping me off and going in alone. It was a day case so was told I would be out later that afternoon/evening. They didn’t have the standard NHS gown they had a white waffle dressing gown which made me feel like I was at a spa…. if only.
When I eventually went down for surgery a few hours later I was walked straight into the operating theatre. It was odd having implements being laid out at the side of you that you know are going to be used. I was kept occupied with the anesthetist trying to find a vein. They didn’t want to put the cannula in my arm that they were operating on and the right arm was a NO due to me having the right nodes removed so I didn’t want to risk lymphoedema in that arm. They couldn’t use the portacath either as they are always scared of causing an infection so it’s only used by Christies for bloods, treatment and scans. So they were aiming to cannulate one of my feet. After about 5 minutes of slapping my feet trying to get a vein he gave up. The left hand it was, and they got a cannula into my wrist as they couldn’t find a vein on my hand. I was out like a light and woke up in recovery.
I was taken back to my room to recover. Felt OK just glad it was over. I finally ate a sandwich which was very hard to swallow after the tube down my throat but 2 cups of tea did the trick. Didn’t feel great after that and rather sick with the taste of anesthetic, that just wouldn’t go away. An hour or so later I had buzzed for the nurse and they decided to give me an antisickness injection so a nurse came to jab me in the bum.
The relief came an hour or so after, I had called Jeff to collect me and we were on our way home.
Recovery is still happening 9 weeks later. The additional surgeries I’ve had on that side with full neck node removal, sternotomy, radiotherapy in both of these areas as well as radiotherapy on my humerous bone in the last 5 years have caused additional problems with swelling. Draining has been a regular occurrence, with 250 ml drained a couple of times, then 530 ml, just over 400 ml, 450 ml and a 150 ml. I’m currently left with a huge seroma shelf under my arm. It feels hard and solid like a hematoma now not a wobbly fluid seroma. I’m constantly uncomfortable, can’t wear a bra, have to wear a bandeau bra as a normal bra wont fit with the swelling on the left side. The M&S mastectomy front fastening bra was a waste of time and made the fluid collect more under my arm. I try to compress it with the bandeau bra as it covers the area but it just isn’t going away. I can’t put my arm down to my side and it’s making me feel very disabled with the lack of movement, pain and discomfort. I know my surgeon is trying to reduce the amount of draining I have so that it does get better naturally and I’m told it will reduce in time… but in the meantime it’s very bloody uncomfortable.
I saw the nurse this week who then suggested we try to drain it as it was rock hard (thinking that there wouldn’t be anything drained off it) and I had around 150 ml off of blood so this has now turned into a hematoma. I saw the lymphoedema specialist who measured my arm and advised it did have a some swelling and that really it would be best to have a compression sleeve. So measured up she found a sleeve with mild compression and put it on my arm. Within about 2 minutes I put both my hands together and the left hand with the compression on started to go a deep purple colour. She was worried and got the other 2 nurses to check. Even if I held both hands out for a minute the colour would go purple. She wasn’t happy with this so 5.30pm went over to a&e with me to get this checked. I was in until 9pm as they took blood and do a couple of tests. A blood clotting test was over the normal limit but that could be due to the draining that I’d just had. One of the vascular team on call checked my pulse and queried whether it was a DVT. So he referred me to the vascular team the next day. They did an ultrasound on my left neck, under arm and arm. The report said no DVT and that’s great. I went and told the lymphoedema nurse specialist who was surprised it wasn’t a DVT. She’s now requesting an appointment with my surgeon again as she isn’t happy and still thinks that there is a possibility of a DVT.
So I now i have slight lymphoedema swelling in my left arm. No wonder with the lump I have.
I just want to feel better and have some normality again. To get exercising again and not to live with the constant problems.
Anyway, all this is a pain to deal with but really the least of my worries.
The hardest thing to do was to tell my two children about the brain metastasis but they know now, so that’s why I’m sharing this blog as I feel I can now cope with people knowing. It’s wondering what others have going through their mind that upsets me and what people are thinking. I’m currently not dying. Don’t give me or my family a look of pity. Don’t tell me everything will be OK and that I can fight it. Cancer does not work like that. If anyone dies from cancer THE DRUGS AND THE SYSTEM HAVE FAILED THE PATIENT – not that we haven’t tried hard enough. And I’ve not changed, I am the same me – funny, cheeky, sharp, sarcastic, grumpy, pissed off and angry self; but as you can imagine have a lot to deal with mentally as well as physically. Cancer does strip away at you and it’s why I find comfort with my cancer friends. It’s hard for anyone else to understand but that’s why I also write and share my thoughts.
I am continuing the work I do for all breast cancer patients with my www.abcdiagnosis.co.uk and with www.metupuk.org.uk . In fact in the middle of SRS I was applying for a grant to get breast cancer patients in Greater Manchester to be Nordic Walking trainers and leaders. I was awarded the grant (they know nothing about my latest health issues) and there will be more in the coming months about this. If any breast cancer patient in the GM area is interested then please email me on jo@abcdiagnosis.co.uk
If you want to donate to my abcd retreat that will be hopefully back on next year please see the link here https://www.gofundme.com/f/breast-cancer-exercise-retreat
My book was launched so thats kept me busy! You can download for free here or order a book (pay for P&P only) https://www.abcdiagnosis.co.uk/resources/abcdiagnosis-book/
My infographics that are SO important for others who have had PRIMARY breast cancer to be aware of – if there is one thing to do, share this with ANYONE who has had primary BC https://www.abcdiagnosis.co.uk/resources/infographics/
I am still doing the important work with METUPUK with the #BusyLivingWithMets campaign to push for greater #drugaccess, clinical trials, surgeries, treatments, stopping inequalities etc. Working with anyone to try to make change, pharma, NHS, charities, health companies whoever will listen and take action.
Please support AND donate to the page >> https://metupuk.org.uk/help-us/– many of us are secondary breast cancer patients, like me, who are working and pushing for change. All of us are on CONTINUOUS treatment for this disease and taking this work on. We need help from EVERYONE to support what we do from sharing posts and information we send out on social media to getting involved in other “back room” supportive work. Again, email me if you can help in any way. We have some supportive primary patients too – anyone can help. We have a Mum whos daughter, good friend and advocate died of SBC and a husband who’s wife another friend and advocate also died and both want to support our cause. We are growing in numbers.
Lastly, look out for our October Breast Cancer Awareness Campaign #IAmThe31 which will be promoted soon. See our link here that you can sign up to if you have secondary breast cancer >>> https://forms.gle/J5TiGJYivAt8J68D9
We have a long way to go to educate people but we can only try. It’s how we, ourselves have learned. If you want to help with abcd or metupuk in any way please email me jo@abcdiagnosis.co.uk
And I will keep #BusyLivingWithMets for as long as I can. I’m just sad that lockdown wasn’t the idyllic time that I wanted and pretended it to be…
Jo x
