I thought it would be prudent – and probably quite cathartic – to tell my ‘cancer story’ up until now. Set the scene for anyone who might be reading and allow me to vent a little bit!
I think I will write a couple of separate posts about specific elements (like IVF) – this is just going to be a whistle-stop tour of how the hell I’ve ended up with a tube sticking out of my arm for five months and a Friar Tuck hair do. Don’t laugh – I could be headed for the full ‘Sinead’ given a bit more time.
It all began in June with a close family member also being diagnosed with breast cancer. I’m not going to name names as they might not want this information splashed all over the web – but lets just say it made me a bit more ‘breast aware’. Especially as my paternal grandmother had breast cancer aged 37 and we lost my lovely dad to liver cancer in 2011. It’s not been a very good few years for my family.
My increased breast awareness led me to join the GP surgery in August (hadn’t been for a good ten years prior to this) and point out a sort of hard wobbly bit in my left boob. He couldn’t feel it to begin with and when he did he thought it was normal but gave me an urgent two week referral to the ‘Rapid Diagnosis Clinic’ at the hospital – mainly I think based on my family history…
…and then this happened:
15th August – Initial appointment at hospital, ultrasound guided core biopsy. Consultant’s opinion – can’t feel anything, oh yes there it is… looks benign to me. Ultrasound technician not so sure…
22nd August – Results day. Ductal Carcinoma in Situ (DCIS). Bad but ‘in situ’ means it’s not invasive. Treatment plan – probably lumpectomy followed by radiation therapy. More scans needed first. Day surgery booked for 21st September and pre-op done.
22nd August to 21st September – Mammogram followed by a ridiculous series of events.
26th August – It’s my birthday. It’s not a very good one.
29th August – Results from Mammogram show MRI needed. Not a big surprise as I was told I would need an MRI scan back on 22nd August. I ask if I should consider a mastectomy given my family history – I am made to feel very stupid for asking this question by surgeon. A very bad appointment resulting in me bursting into uncontrollable tears afterwards in the waiting room. Great.
At some point here I tell the family. This makes me sad but is a relief all the same.
5th September – MRI scan finally happens.
7th September – Breast Care Nurse (BCN) calls to tell me MRI scan clear – hurrah!
10th to 14th September – M and I go on a zoo tour holiday. Somewhat ruined by a phone call at 16:30 on 13th – BCN leaves message saying I am urgently needed at hospital at 08:30 the following morning. Fraught return phone call reveals that BCN nurse thinks I’m stupid and as she has realised we are on holiday (it was in my notes… couldn’t have told them more times) that I’m ‘not to worry’ and she ‘can’t remember’ why I am needed.
14th September – A call the following day reveal MRI is not clear at all and further biopsy is needed. BCN gave me incorrect information about MRI and they’re not sure when I can have biopsy. Several irate phone calls result in biopsy appointment booked 17th September at 08:30. I am still VERY annoyed about this whole episode. I may still complain. They could not have handled things worse.
17th September – Stereotactic biopsy is highly unpleasant and stressful. Not helped by news that close family members cancer has spread to bones. This is not good news. I cry throughout procedure. Blood everywhere, apparently I look very faint. No shit.
19th September – Results from second biopsy clear, ok to go ahead with surgery.
21st September – Wire guided wide local excision (WLE). Inserting the wire through my ‘bone hard’ calcifications (their words, not mine!) under a very ineffective local anaesthetic is far and away the worst part of this procedure. Two weeks off work to recover. Mainly based on the fact I think the pathology results will be bad and I can’t face work for worrying.
02nd October – Results appointment from WLE… I am upgraded to invasive cancer. Oh and the margins were not clear on the DCIS – another WLE needed with a sentinal node biopsy to see if it has spread. That could not have gone worse. Devastated about fertility implications but this news wasn’t a big surprise.
16th October – Referral to Fertility consultant. He writes off to request funding for IVF treatment. If we don’t get funding it will cost £5000+. Blood tests done for HIV & Hepatitis in case we decide to go ahead.
22nd October – I call fertility consultant receptionist to say we would like to go ahead and attempt embryo freezing.
24th October – Second WLE and a sentinel node biopsy (SNB) using the OSNA technique performed to check if cancer has spread to my lymph nodes. I am injected with radioactive material and blue dye for the SNB. I am a radioactive smurph. Wake up to be told SNB is clear – some good news for the first time!
2nd November – We fill out and sign 1000 forms and start IVF treatment. I inject myself for the first of many times. First scan done. The fertility nurse person is absolutely LOVELY.
6th November – Results appointment from second WLE… still no clear margins on DCIS. Options are now therapeutic mammoplasty or mastectomy. Again, this could not have gone worse.
7th November – AM: IVF Scam. PM: Referral to plastic surgeon. He is a massive improvement on my first surgeon. Come away with a referral to the genetics clinic and thinking I will have a bilateral mastectomy with implant reconstruction. Chemo is to be first on the agenda.
09th November – IVF Scan.
12th November – IVF Scan. At some point here we received the call to say funding had been approved – great news!
14th November – IVF Scan.
16th November – IVF egg harvesting day. Six eggs successfully harvested. I had hoped for more. Surprisingly painful afterwards.
17th November – 3 eggs successfully fertilised and embryos frozen. Again I had hoped for more but three is better than none.
19th November – First appointment with Oncologist. I will be having 8 rounds of FEC-T chemotherapy on a 3 week cycle. He agrees to me having Zoladex injections. No one seems to know my HER2 status – this determines if I will need additional Herceptin treatment for a year. I will have hormone treatment for 5 years – oncologist agrees there is an option to have a break from this after two years to try for baby if we want to.
20th November – ECG scan and appointment with chemotherapy nurse to talk through side effects etc, first Zoladex injection… It is a very large needle!
22nd November – Flu Vaccine.
28th November – Appointment with NHS ‘Wig Lady’ … I look like a total tool in the wigs. Best hope cold cap works.
30th November – AM: PICC Line fitted in arm… apparently on a scale of 1 – 10 for difficulty of fitting, mine is a nine. Vein protests but I end up with a tube sticking out of my arm as required. PM: First of four FEC treatments and cold cap followed by minor puking and various other side effects.
30th November to 20th December – I get used to side effects while trying to do Christmas shopping. This is not advisable. Work from home every Thursday so the District Nurse can come and flush / change dressings on PICC and take blood test for next chemo.
18th December – Second Zoladex injection after some kind of endurance trial to get prescription from GP – resulting in me planting myself in GP surgery on 13th December and refusing to leave till someone writes it.
21st December – Second appointment with Oncologist and round of FEC. Cold cap feels much colder as hair has been shedding. Drugs are changed slightly – I spend literally all night throwing up.
22nd December until now – Chemo fuzzed Christmas and New Year. Approximately half of my hair falls out. This is quite upsetting and makes my head hurt.
Next steps: lots more chemotherapy and at the end of February I go back to discuss surgery options with the Plastic Surgeon. At some point I assume I will hear from the genetics clinic too. Can’t wait.
So that is how I have ended up with the aforementioned Friar Tuck hair do and tube sticking out of my arm…
it’s been an interesting five months.