Here’s a rundown of what happened when. I’ll try and keep it up-to-date. When and if I write something relevant to a particular appointment, I’ll link to it, so this might end up like a chronological contents page. Or maybe not, let’s see.
November : My parents tell me that my Dad has a mutation on his BRCA1 gene that he may have passed down to me and, if I want, I can get screened for the mutation. I tell them I don’t want to find out, but I do.
December: Genetic Counselling, pre-screening, and then blood tests to determine if I have the gene mutation.
January: I have it. Fuck. I don’t cope well and tell pretty much no-one except my husband. I decide to start the early MRI screening but I don’t want elective surgery yet to remove my breasts and ovaries, my risk is only a few percent above the average non-mutation-carrier, right?
February : I’m due for my first MRI but I need to be sure I’m not pregnant first. Turns out, I’m pregnant! Excellent news as we had been trying but all the BRCA1 stuff gets pushed to the bottom of the To-Do list.
Feb-Nov: Grow baby.
17 November 2015: We have a baby!
Nov 2015-June 2016: Keep baby alive.
2 June: Our 7 month old baby has stopped breast feeding at night so my huge boobs are a bit uncomfortable and ‘lumpy’ but I feel a lump that feels different.
3 June: It’s a Friday. Maybe it’ll go down over the weekend and it’s because of breast feeding.
6 June: It’s still there so I go and see my GP. He recommends a fast track appointment for a scan and a biopsy because if my family history.
20 June: Breast ultrasound, biopsy and initial exam: things look “benign but let’s be certain” the sonographer says.
27 June: It’s cancer. First meeting with two surgeons and a nurse. “You need to decide about chemo, surgery, radiotherapy and you must stop breastfeeding. Now.” A thousand pages of literature.
29 June: We see the medical oncologist. She explains chemo. You will probably lose your hair. Think about fertility. Do you want a cold cap? You must stop breast feeding now. “I know you want to breast feed but you also want to be alive.”
1 July: Two week holiday. We phoned the NHS cancer helpline 2–3 times with questions and they always called back with help. Time to start telling friends and family.
18 July: CT scan. Makes you feel like your wetting yourself (you’re probably not) when they give you an iodine injection
MRI scan. Weird but not bad. Feels like you’re inside an old dial up modem. By the time you start to feel like you need to get out, they pull you out. It’s not dark and it’s a bit like you’re waiting for a massage. You’re not.
19 July: Bone scan. You get a radioactive injection in the morning and your scan in the afternoon. Pretty straight forward and I spent a couple of hours sunbathing but I couldn’t hold our baby for the rest of the day which made her cry. And then made me cry.
20 July: Appointments with Fertility doctors “Do you want to delay your treatment to freeze embryos?”, ‘internal’ exam (let’s leave it at that), more blood tests to double check my liver function before chemo and check my fertility, oncology meeting to discuss my plans and ‘sign up’ to chemo, ECG to check my heart.
21 July: 2nd ultrasound for comparison to first. Mammogram. More blood tests, I’ve lost count of why.
22 July: Chemo 101 with a nice cancer nurse who keeps me calm and shows me the Day Unit where I will be getting all my chemo.
29 July: First Chemotherapy. Neighbours flood our bathroom. Electrical fire ensues. Lost weekend due to initial side effects.
3 Aug: Receive a letter for a heart scan I should have had on 2 Aug, need to rearrange as I don’t have a time machine.
6 Aug: Baby Christening! Totally unrelated to cancer and it’s nice to do something normal.
8 Aug: GFR Blood tests – 6 hours of hourly blood tests to check my baseline kidney function. Dull McDullFace.
10 Aug: Hair starts to fall out.
17 Aug: Early morning emergency hair cut. Oncology meeting to review my progress and take bloods. It looks like my lump is responding well to the chemo. They mistakenly schedule my chemo for this day. Many phone calls ensue to find out it is, in fact, on 19 Aug.
18 Aug: Phone call to say my white blood cells haven’t recovered and I’ll need a blood test in the morning before I can have chemo.
19 Aug: Early morning blood tests and sent home 3 hrs later as my blood count is still not high enough.
20 Aug: Wig fitting. Actually quite fun and I decide to go for something ‘different’.
23 Aug: As 19 Aug. Really frustrating. Sent away for 8 days this time.
31 August: Chemo number 2. My white blood cells have finally recovered.
1 Sep-onwards: Getting on with it.
7 September: Collect my new wig. Much excitement.
23 September: Chemo 3. Really tough cycle that leaves me nauseated and exhausted for 8 days but ok after that.
October: Breast Cancer Awareness Month
3 Oct: Midway MRI and ultrasound to check on tumour response.
11 Oct: Cancer charity signs me up to their complimentary complementary therapy and I get a nice massage. Lovely.
12 Oct: Catch up with Oncologist. Tumour appears to be shrinking.
14 Oct: Chemo 4. Last EC chemo.
4 November: Chemo 5. First new combination chemo: Carboplatin and Paclitaxel. 8 attempts to find a vein. 6 hrs in the hospital and out. Paclitaxel wears off quicker so I need to have it weekly.
8 November: Chemo 6 cancelled. “We probably shouldn’t have given you chemo last week, your liver and kidneys are struggling. Have a week off but come in for emergency blood tests please”
9 November: Blood tests
16 November: More blood tests. All clear
17 November: Milla’s first birthday.
18 November: Chemo 7. Paclitaxel top up. ‘Just’ 3 hours in the hospital.
23 November: More bloods tests. “So it looks like your internal organs are struggling again but we’re going to give you chemo anyway and see what happens.” Riiiight.
25 November: Chemo 8. Carboplatin and Paclitaxel. 2 attempts to find a vein. 4 hrs in the hospital and out. Blood pressures getting a bit low these days (98/44) so I’m a bit tired.
30 November: Blood tests — things look sketchy
2 Dec: Blood tests and Chemo 9. I’ve just about recovered, it seems. Paclitaxel. 1 attempt to find a vein — amazing nurse explains I should keep warm and hydrated before each chemo and I might not need to have a permanent line inserted.
7 Dec: Blood tests. I start getting a nose bleed which doesn’t stop.
9 Dec: Chemo 10. Paclitaxel.
14 Dec: Blood tests
16 Dec: Chemo cancelled, I have no platelets left and my nose has been bleeding for 10 days straight as I don’t have enough clotting power to stop it.
21 Dec: blood tests.
23 Dec: Chemo 11. Carboplatin and paclitaxel. Big chemo, just before Christmas. Rubbish.
28 Dec: Leave family Christmas to get back for routine blood tests.
29 Dec: Blood tests
30 Dec: Chemo cancelled as I don’t have enough white blood cells this time. Looks like my body is tired of this shit.
4 Jan: Blood tests
6 Jan: Early morning appointment with surgeons to discuss my ‘options’. Chemo 12 in the afternoon. Paclitaxel. I’m in hospital for around 7 hours.
11 Jan: Blood tests
13 Jan: Chemo 13. Paclitaxel
20 Jan: Chemo 14. Carboplatin and Paclitaxel
22 Jan: Nose bleeds start again
27 Jan: Chemo 15. Paclitaxel
3 Feb: Chemo 16. Paclitaxel. On the morning of my last chemo, I meet with my surgeon to discuss what I’m thinking about for surgery. It makes finishing chemo rather anticlimictic.
13 Feb: We start our daughter in nursery a few days a week to take the strain off after surgery. Helpfully, she hates it and cries a lot.
15 Feb: Pre-assessment for surgery. ECG, blood tests, counselling, questionnaires and surveys. For four hours.
17 Feb: We sneak away for a family holiday to Majorca before my surgery. Wait, do I have a cold, I feel like I have a cold…
24 Feb: Final meeting with surgeons. I tell them feel like I have an infection. They tell me it’s probably nothing so I just have some extra blood tests, to eb safe.
25 Feb: Surgery day! I get as far as the terrible dressing gown and funny socks before my blood tests come back to say that I have an infection. Back home for me (via a shoe shop where I buy some new shoes. Oh, and my husband takes me out to lunch as we’ve arranged babysitting so we may as well…)
4 March: Surgery attempt 2. All goes to plan and I’m in hospital.
5 March: Ouch and faint.
6 March: Oh my god, Ouch. Discharged from hospital.
13 March: First surgical follow up. Everything looks good. Drains removed. Seriously ouch, ouch, ouch.
17 March: Second surgical follow up and possibly a new wig.
27 March: My right nipple falls off. Odd.
29 March: First radiotherapy consultation — it looks like I’ll be having 3 weeks of daily radiotherapy. It’s borderline whether I need it at all but, if ai do, it could reduce by chance of getting another breast cancer from 10% down to about 3% in my lifetime.
5 April: Radiotherapy planning — this is a meeting where you go over the side effects of radotherapy (skin damage, fatigue, ruining the surgical implants)
7 April: Third surgical follow up. Surgeons are pleased with my healing, I’m not that happy but I don’t have much of an alternative. I think they are too big.
27 April: Radiotherapy is supposed to start today but my husband goes into hospital so we delay until the following Monday.
1 May: Radiotherapy starts. It continues for the next 15 consecutive days. It’s pretty ok, to be honest.
May-July: Pretty event free. Blessedly event free. There’s something a little odd going on behind my left nipple. Some fluid build up that the surgeons can’t explain. 3 times I get called in for Day Surgery. 3 times I get sent home as they don’t really know what to do.
26 June : Go back to work 2 days a week for 6 weeks. Knackered but good.
7 August : Go back to work 3 days a week for 6 weeks. Actually a bit easier than two days, strangely.
24 August: Fly to Bulgaria for a few days for impromptu holiday. Left boob is a bit sore.
24–29 August: 5 days of IV antibiotics in Bulgaria for massive infection.
29 August: Boob explodes from pressure of infection fluid on flight home. Oh shit.
30 August: Major surgery to remove implant and clean cavity. Vac drain inserted. New technique being trialled at Guy’s Hospital.
1 September: turn 33.
2 September: Wound recleaned and vac drain re-attached. Sent home with it. Great.
5 September: Wound recleaned and new implant inserted to replace old.
6 September: Sent home with minor drain that is full of blood.
8 September: Hospital visit to check drains — too full of blood to remove.
12 September: ditto
15 September: ditto
19 September: ditto
25 September: ditto. Even the surgeon is bored of me.
28 September, midday: Surgeon decides that drains have been in so long that they risk giving me an infection, rather than preventing one. They are cautiously removed.
28 September, midnight: Fever sets in. Oh shit.
29 September: Admitted with major infection, back on IV antibiotics.
29 Sep — 3 Oct: Stay in hospital as infection recedes but skin starts to look ‘odd.
3 October: Cautiously sent home on oral antibiotics.
5 October: Skin ruptures. Again. Double shit.
9pm emergency operation to remove all the necrotic skin and strip out and clean the wound and cavity. Again. This time the cavity has been made smaller so an expander implant is fitted (Becker, I think).
6 October: Sent home on oral antibiotics.
10 October: Drain check — too bloody to remove.
13 October: Drains out finally! Carry on antibiotics until it’s time to expand the implant.
4 November: First expansion. The surgeon injects your boob with a syringe of sterile saline. It goes in to a port buried in your side that you can feel and sort of see. It feels right but not painful. 2nd inflation planned for late November.
17 November: Our daughter turns 2!
20 Nov: Another infection strikes. Bloody, shitting, ridiculous bad luck, balls and buggery. Admitted back to hospital for IV antibiotics.