Tears and tantrums

Feb 02, 2014

This week has had both good and bad parts - rollercoaster does it justice.

I’m sitting in Terminal 1 at Heathrow waiting for a flight to Dublin for a couple of days of meetings and then I’m off to New York for a couple more. I’m ridiculously early for my flight as I managed to get a lift from Dan rather than fighting through 3 different trains during rush hour. Thanks Dan, your knowledge of the eddies and flow of the M25 traffic is impressive!

I feel like I’ve aged a lot in the last week and yesterday there were tears. The difference a week off chemo has made is huge, Julia has had some energy this last week and that’s been great. We’ve needed it mind as she’s been to see 4 different consultants. Julia has been stressing about not knowing what’s happening after chemo, which was initially due to finish this week but as she missed one its next week.

So what’s next? That has been the question and is seems not even the consultants knew. The thing is there is no road map, no 12 steps, no single way of killing cancer. The chemo doctor was pondering if we should do more chemo -> surgery -> radiotherapy and hormone therapy or surgery -> radiotherapy -> more chemo and hormone therapy. So to help decide he arranged Julia to have a scan and then meet the surgeon to see what he thinks.

Pre surgery chemo is the exception rather than the rule. Julia also had her chemo drugs in a different order than the “normal way”. We found out why, it was because Julia’s cancer was growing fast and the position of it that meant that she had to have chemo first and the big drugs first. When Julia had her scan when we heard that the original size of the cancer was 8cm and has shrunk to 1cm. We both agree that we’re bloody glad we didn’t find out that nugget earlier on, it would have scared the bejebus out of us.

We took a train to London (to Harley street no less) to see the genetics doctor. His office was bigger than my front room - epic. The upshot of it is Julia is being tested but the results won’t necessarily be conclusive or provide a boolean yes or no about what to do in the future. It raised a few questions but we’ll look at them more when and if we have to.

The surgeon saw Julia and really wanted to take a lead from what she wanted. Julia joked that she just wants to be told when to turn up. There was some discussion about what to do. Julia has had a great response to chemo and there may even be a complete pathological response and all cancer cells killed. The surgeon discussed a 1990’s clinical trial where people who had such responses didn’t have a mastectomy and all were clear after 5 years. Julia and I both sat there not wanting to be told that there would be no surgery - as we’d just live with a cloud of fear over our heads. Anyway, no need as the surgeon went on to say that none made a 10 year clear, which confirmed his belief in cutting out the problem. A date is booked for surgery - 24th March.

I think we’ve had such an amount of information this week, that its been mentally tough. Tension levels have been up as away this week. I enjoyed a well earned pint on Saturday but could have done without the hangover on Sunday. Julia cried Sunday morning not wanting me to go and then later apologised for crying. Imogen blew up when asked to write out her times tables and then when I tried to get her to calm down I lost it after she started pushing me in the face.

I was so ashamed of scaring her when I shouted at her that I started sobbing. The dam broke and the powerlessness of it all struck home hard. I had a five minute breakdown and just sobbed. I had just realised that for all the hoping and belief that I could somehow help my children through this unscathed. I now know I can’t and this horrible disease is hurting my children also. It’s a hard realisation.

The thing probably is not to set unrealistic expectations but emotions and beliefs aren’t known for being rational. Although, my emotions are still a little raw (the last paragraph was incredibly difficult to write) I think the good thing is the realisation. My next steps will be working out how to minimise the impact and help ensure the kids are rounded. The only thing is I’m not sure how best to do that… Once I return home from Dublin and New York I’ll look into it more.

It’s going to be a long week, so please keep an eye on Julia whilst I’m away and thanks Grandad Mikey for stopping over for the week.