Yes yes yes. Chemo is done. I am home and, somehow, I am awake. I am happy through the fog. And now it’s on to the next stage. In three days I see the onc for a sign off (I hope) and the surgeon to get the ball rolling on surgery.
Today is the day for celebrating being done with chemo. Tomorrow I take up arms again against Genghis. So once again I say – BRING IT ON. I will get through. I will win. I will get through this and emerge stronger. Have no doubt.
I’ve just shared this blog. People are reading it. It feels a bit weird!
Pink champagne is one of the things I’d take to my island if I were ever on Desert Island Discs (the others are sushi, chips, duck pancakes, salt and vinegar crisps and melon, in case you are wondering – although the pedants amongst you will point out that I’m only allowed one luxury).
So it was only right and fitting that I celebrated the end of my chemo last night with a glass of the rosy bubbly stuff that I’d been saving since my birthday. Bearing in mind that Taxol makes me feel a bit drunk anyway, this was a risky move, but it had to be done. Having shipped the small boy to my parents for a sleepover, the mini celebration was with the small girl (start ’em young, I say) and the hub.
Natalie was delighted to be treated like a grown up and to be marking the end of my chemo. She hasn’t found it particularly easy and for her this is a major deal. But I have to admit to feeling flatter than I’d expected. I was quite emotional at the chemo unit when I got my bloods back and the go ahead for the final dose. Then I just moved on. I booked my onc appointment and my surgeon appointment – both in just three days’ time – while I was being infused (!) and now I’m already on the next stage mentally, planning for the Big Op. I thought it was just me, until my hub said last night – “I hope this doesn’t upset you! but I don’t understand why everyone is so happy you’ve finished chemo”. Two peas in a pod! He gets me.
I also have a slight concern that chemo won’t be done for good. Never say never. There is a very good chance it will, but for a very unlucky small group the chemo doesn’t work all that well first time around and they have to have more. Not trying to be an Eeyore, but I can’t rule out the possibility that it might be the same for me. It probably won’t – it wasn’t for mum – but I can’t rule it out completely.
But. But. I’m done for the moment at the very least so that is something to be happy about. And in the spirit of happiness and pink champagne, here are some photos of my last chemo day.
Yesterday I had a post chemo appointment with my oncologist and then an appointment with my surgeon. I have so much respect for these guys.
David Miles is just amazing. He is calm, funny and hugely intelligent. He is direct and clear. He examined me thoroughly and said how pleased he was with how I have done. He answered all my silly questions and then sent me away for 3 months. He has treated me like an intelligent adult throughout, listening properly to my views and never once patronising me or giving me anything less than his full response. What a guy. I’m a huge fan.
Mr Al-Dubaisi apparently treats three quarters of NW London. He is gentle, thoughtful, considered, calm and straight. His expertise shines through. He is caring without being cloying. He also examined me thoroughly and said how pleased he was. We discussed next steps and he is happy to operate when and where I would like him to. He has no ego about these things. He gave me the details of the plastic surgeon who will do my immediate reconstruction and will also refer me for a psych assessment. I will then see him again in a few weeks to finalise the details for the Big Op. He is a total star and I couldn’t be in better hands.
The respect and trust I have for these two is boundless. I would have struggled to put my life in the hands of anyone who didn’t engage with me as an adult with a brain, but also a wife and mother with a heart. These two have always recognised that I am both. I am in awe of them. Thank you.
Yesterday I made an appointment to see the plastic surgeon that Mr Al-Dubaisi works with. My Floyd isn’t a cancer specialist (not sure there is such a thing in the plastics world) but he does seem to get all of Mr A’s private referrals so I guess he knows a thing or two about breast cancer.
Anyhow. Apparently plastic surgery is booming. I have to wait two weeks for an appointment. He gets that booked up. I can book to see Mr A only a couple of days in advance, but it’s a two week wait for Mr F. I suppose that’s common sense in that you want to get a cancer concern dealt with PDQ but a nip and a tuck can wait. But it seems so intuitively wrong that a plastics guy has such a waiting list. There are obviously lots and lots and lots of people wanting plastic surgery. I’m sure lots of them will be doing it for medical reasons, like me. But there must be a fair number doing it for aesthetic reasons only. Given our family’s extensive exposure to doctors and hospitals in the last few years, I can’t get my head round someone opting for an operation purely on cosmetic grounds. I know that it takes all sorts, but really?
So in two weeks I will get a chance to talk about new boobs. Much hilarity can be derived from this. Already I hand had several conversations about size, pertness etc etc. I don’t care all that much (at the moment, at least). I want boobs, for sure, but I can’t get too excited about them. I am not my boobs, nor are my boobs me. Frankly, I just want the whole bloody thing over and done with. Having been through chemo, I’m just focusing on getting my strength back. I want to have energy again. I want to find my mojo. Nice boobs will be an added extra.
Lots of people who have had cancer talk about the fear that haunts them – the fear that it will come back. Books have been written on how to cope with this fear and there appears to be a whole sub-segment of the counselling profession giving support and strategies for how to put The Fear to the back of your mind.
No one told me that a The Fear would visit me this soon.
6 days ago I found a new lump.
It is right by the scar from my lumpectomy. It is hard and immobile. Good old Google suggests that this is more likely than not to be a fat necrosis – a lump of fatty scar tissue deprived of blood by the severing of blood vessels during the operation, that has hardened into a ball. I went to see the doc on Thursday. He felt it and said it was probably from the op but referred me for an ultrasound. The radiologist scanned it and said he thought it was a fat necrosis but he couldn’t be sure, so performed a core biopsy on the spot. He told me the tissues was “gloopy” and floated, but wouldn’t be drawn on a conclusion.
So here I am, waiting for the results. I have to wait a total of 4 days, because of the weekend. I have to go in person (and hence miss my team’s Christmas dinner) tomorrow night for the results. And The Fear waits with me.
My online community has assured me it’s probably scarring of some kind. Many of them have had similar and most often it is not sinister.
But of course that doesn’t help all that much. My mental strength is being put under a huge strain, trying to put The Fear into a bubble and banish it to a far corner of my consciousness. I am invoking all sorts of strategies to try to stop the bubble from bursting and The Fear to come flooding back in and occupying front and centre in my mind. It’s tough. It’s rubbish and it feels hugely unfair.
Genghis is back. I think. I’ve got another tumour. It’s just by where the first one was and it’s another fast growing one so chances are it’s a local recurrence. The chemo didn’t work.
So now I’m back where I was six months ago. Scans to make sure it hasn’t spread. I hope. Waiting for the pathology report. The double mastectomy has been brought forward and will happen ASAP in the new year. Then more chemo.
The worst bit was the look on the faces of the surgeon and the oncologist. Both were shocked. The surgeon is “concerned” (not very good to hear).
And now the fear that it’s spread.
I’m not doing all that well. I feel in shock. I am on autopilot. I can’t cope with people saying nice things. I don’t really want to talk to anyone. I just want to lie in a dark room in silence.
This is horrid.
I have been in a very dark place waiting for the results of my scans. I have been convinced that I will get bad news from the doctors. I have been convinced that my time is running out. I have been filled with tremendous sadness for my husband and kids, for my parents and in-laws and siblings. I have had a head full of endless images of my funeral, of my husband trying to explain to our son that I am gone and not coming back, of my little girl floundering without her mum, of my husband alone in our bed at night crying his heart out, of my parents unable to cope with their loss, of the achievements of my children that I will never see, of the grandchildren I will never meet, of the places I will never visit, of the world events I will miss. I feel like I am stranded on a distant comet, hurtling through space on my own with the oxygen running out and no light reaching me. No one can understand this feeling. No one can reach me. No one can say anything that can console me. No one can pull me out of this. I am suffocating, drowning, panicking. I can’t eat. I can’t move. I am constantly in tears. I can’t communicate. I can just about keep it together in front of the kids but it takes a super human effort. Thankfully at the end of the day I am so exhausted I fall asleep, but when I wake up it all floods back. My previous levity and positivity and strength have vanished. I don’t recognise myself. I hope that I will be able to pull myself out of this once I have the results, whatever they are, but I am scared that I won’t, that I am going to be lost for good.
Genghis is in my liver. There are multiple spots. Chemo is starting ASAP. The prognosis isn’t great but there are people who stay stable for a good while or whose mets shrink. It is even possible for the mets to disappear completely, though unlikely. My onc has said to plan for the worst but prepare for the best.
In the past 2 days Elliot and I have had conversations we didn’t dream of having until we were old. We have cried buckets and been very very sad. We have talked about how he and the children might cope if I’m not here, how he will move on in time, how the kids will remember me. We have talked about practical things like savings accounts and life assurance. We have tackled it all.
It has been the hardest 2 days of my life. I am buying birthday cards for the kids for each year until they are adults. I have got a box to fill with special memories and souvenirs. I’ve bought a notebook for each child and for Elliot to fill with loving thoughts. I’ve written a long list of all my precious items and who I want to have each of them. It is frankly horrific although the practical organisation is keeping my mind busy.
I have friends of most religions praying for me. A prayer has gone in to the Wailing Wall. Candles are burning. Challah is being taken. My Hebrew name is being changed.
And then there is the medicine. We need this to work. It may not work forever but it may hold the cancer at bay. I would like more than a few months. I’m not asking to live till I’m 80. 60 would seem pretty good right now. Even 50 – to see Joey’s bar mitzvah. All unlikely but I have to have hope. I have to be positive. I have to keep going long enough for the breakthrough in the treatment of triple negative breast cancer that is being promised. I will do my best. I will do anything. Money is no object. Pain doesn’t matter. I just want longer. Please. Please.
I was going to start this blog entry by saying that we are adjusting to this new reality. But I’m not sure that’s quite right. Certainly the tears are slowing up although they are still catching me unawares from time to time. But the horror of the situation isn’t fading. I have a constant knot in my stomach. I feel on edge all the time. My mind is whirring. I have had to think about the details of the worst case scenario. I’ve done a phone tree for spreading the news. I’ve written a long list of where all my treasured possessions should go. I’ve talked with my nearest and dearest about the whos, wheres and hows of my funeral. There’s more to do – I have messages and letters and cards to write, a knitting project to finish, photos to print. Elliot has asked me if there are places I want to see or things I want to do but I can’t quite get my head around any sort of bucket list. I just want to live – normally.
And there are the seeds of hope. I don’t want to encourage these to grow because I can’t allow myself to hope too much. But there are new drug trials, more types of chemo, people who survive with liver mets. The new reality is a roller coaster – bleak and black yet punctuated by these seeds of hope. It’s more exhausting than anyone could imagine. I am sleeping well because I am so tired by it. And because sleep allows me to escape back to the old reality – the one in which Elliot and I grew old together, watching our kids thrive and flourish. In my new reality it is likely that my husband will become someone else’s husband, my kids will grow up without me, my friends will experience joys that will never be known to me. I can’t adjust to this new reality.
So instead I must be focused on the fight. I am going to fight. I am going to push the new reality away as hard as I can for as long as I can. I am going to open my mind and my heart and my body to any and all possibilities. I am asking G-d to keep the old reality going for me for as long as He allows. Sod the new reality. Sod it. Sod it. Sod it.