Janet's blog

It's looking like the first chemo cycle may not be a reliable guide for the second chemo cycle. Day 2 - first day after chemo - I was awake at 5am, feeling sick, got my first pill down but when it was time to eat, couldn't get to a rice cake in time before I was sick. That was a fairly brief if energetic episode and I was then able to take on the rice cake (good tip from early pregnancy) and the next pills and recovered fairly quickly. In the afternoon (when Luke got up) we motored (we are enjoying our middle age) to Startops End and had a good lunch, then a little walk around the canal/reservoir, then an hour in Tring Natural History Museum looking at shiny beetles etc. T hen there was a bit more motoring up the hairpin bend to Ashridge Estate and a wander through the bluebell woods. They weren't at their best on a gloomy day, but it was still eye-opening to see the swathes of blue amongst the damp woods. D ay 3 - managed 5:30am before waking up feeli...

Second time around, I thought I'd know the drill and be prepared but there were further  new experiences to delight and amaze. I'd had my blood count done as a matter of course, and although everything's down, they're all still within normal ranges, so the chemo could go ahead. (If they weren't you'd have to have a transfusion before they could go ahead.) All shifts were met by family this time, as Maddy was back from Russia for a week, and Luke from Leeds for a few days. The staff were much friendlier and engaged - my feedback about my human experience of Chemo I that I had given to the Clinical Nurse Specialists had made it to the Chemo Oncology Consultant and perhaps beyond. All in the spirit of Continuous Improvement of course. There was no faffing about asking me whether I wanted a permanent i.v. line into my chest - just an assumption that I'd want one I could have removed at the end of the day (the sort that 95% of patients have in fact). The ...

It's taken me a little while to write about this - I think I needed to get some distance and pull through the first cycle in full, although it was pretty much as advertised. On Day 2, the day after the chemo, I still felt pretty energetic and planted about 20 potatoes on the allotment in hard ground using a trowel. I paid later when my right hand started throbbing and although this eased a bit with some paracetamol, it was joined by flu-like aching back and legs, so I had a couple of sleepless nights. I felt a bit sick on mornings of Day 2 and Day 3 but the 5-days of anti-sickness meds worked pretty well. A huge plus, and a huge boost suggesting that  the chemo is having an effect, was that the frequency of  needing to run to the loo fell off a cliff almost immediately after the chemo - I can show you the graph! I tried not to count this chicken immediately in case it was side effect of the anti-sickness meds, but the effect has persisted. Hoorah - makes daily life a lot...

TBH the actual treatment day was a bit of a curate's egg on the hospital side - good in parts. Technically excellent but smiles did not seem to be on the repertoire, and rather than being ushered through the system by a key worker of any sort, there was a  conveyor belt approach - reception (once we located it and distracted the receptionist from her phone), waiting area, put a line in your arm (having asked me for a decision I thought was a medical one about what sort of line), waiting area, Team C (who?) - thankfully there was then an opportunity to have a little (7 hour) lie down. But this came with a big palaver over using the cold cap (or not) and finding that three out of the four machines were broken. Did get to use it in the end, but with very mixed messages about effectiveness with the cytotoxin regime I would be on. On the friends-and-relations side, it was a thoroughly excellent, free-range, organic egg, and perfectly timed. Thanks to those who put in shifts to keep m...

3 April - another busy day. Chris and I met the chemo oncology consultant and the chemo pharmacist, and I started to feel the confusion of all the tests that have to be done and when they have to be done and where they are done and which lists you need to write your name on and where you have to wait... 4 April will definitely see me back at UCLH for the GFR - glomerular filtration rate test - injection of Chromium 51 (gamma radiation emitter with half-life of 27.7 days) followed by 4 hourly blood samples to see how quickly your kidneys eliminate it. Carboplatin is entirely removed by the kidneys and paclitaxel partially, so they need to know that your kidneys will manage. What else did we learn that's new? Makes sense to have a BRCA gene test - I don't have breast or ovarian cancer in my family, but we're a small tribe, so might simply have slipped through on probabilities. In due course... I'll be given i.v. anti sickness, anti histamine and steroid premeds b...

29.3.18 was a busy day! Started off with the UCLH gynae oncology surgeon (see Kicking off) and i t was a relief to finally reach the talking about treatment stage . I'd been holding my breath for a very long time by now, while I felt the cancer romping away. NHS target for GP to treatment: max = 62 days. GP to  treatment conversation - actual =  68 days.  Spoiler alert - GP to treatment = actual = 76 days. But the expectation was for treatment - yes! Good news! When I asked about prognosis if I didn't have treatment, she looked taken aback and changed from being cool, collected and completely in charge of her brief to being uncertain - for her, treatment was a no-brainer. She recommended three cycles of chemotherapy to shrink and 'melt away' as much as possible followed by major surgery to root out as much as possible, then three more cycles of chemo. She said that the research shows equal outcomes for chemo-surgery-chemo as surgery-chemo and the waiting time fo...

Someone's about to ask - what was it like when the doctor said I had cancer? In one word!

Someone has asked what it felt like when the doctor said I had cancer. This is how I think it is/was. Firstly, I'm not sure he actually used that word - 'mass' was the one I remember but I certainly construed it as cancer. Secondly, ever since the GP had said I had a lump, I had been in pessimistic mode about what it was. I had previously put various twinges down to lifting something heavy, or simply a gripey tummy which matched the need to run to the loo more than usual. Once 'lump' was added to the loo issue, I started to feel it, the twinges, the gripes, obstruction when I bent in the middle and so on. That gave me plenty to be pessimistic about and that set off the 3-day panic attack, which I think was my really low point. It was the equivalent of being told, cold. I think my dad had recently set a very good example of how to be when you have cancer, even though his treatment options were delaying then palliative rather than a serious bash at getting rid o...

I may have been a bit previous about the hair... Just remember - not be an occasion for levity.

17.4.18 I feel as if I'm lying about in a comfy hammock made of people linked together caring for me and holding me up. It was a bit hairy getting into the hammock, and it's a long way above terra firma but now I'm there I feel pretty relaxed. How horrible it must be to be in this situation at an older age, with fewer friends left and family maybe elsewhere. There are the professionals including a little team of Clinical Nurse specialists (CNSs) who are pretty much at the end of a phone. There's the Macmillan Advice and Info centre, also at the end of a phone, but with a physical presence in the UCLH Macmillan Cancer Centre. There's a 'Living Room' there - at least a couple of meanings wrapped up in that  name I think - where you can hang out, and make tea or coffee without having to wash your mug up afterwards - just put it in the dishwasher! Very useful when you're there for things with long waits, although I now have the Grant Museum of Zo...

The surgical gynae oncologist echoed this when Christopher protested about my blameless life. It's not fair. This is a statement, not a protesting howl. I reduced ovulations by carrying two and a bit children and breastfeeding two. I haven't had HRT (might have done if the GP had been less apathetic), I haven't had breast cancer and there's no breast cancer or ovarian cancer in my family, although there is a scattering of other cancers. I haven't had endometriosis or diabetes, haven't been much overweight, haven't smoked, haven't drunk much. I've been extremely boring. But if I'd been more exciting and hedonistic, I might have pegged out by 40. I've been good(ish). I've felt guilty about neglecting my partner and children for work or the allotment.  I've volunteered as a school governor and for a bossy post on my allotments committee. I've looked after my parents closely in the last few years. M y health antennae have been att...

Dearest readers. I don't have enough thanks for all of you who have taken an interest in what's been going on with me. Your presence, distractions, words, cards, flowers, messages have given me a fantastic sense of support. I'm sorry that in return I haven't always been able to get back to everyone and I can't remember what I've said to whom and end up boring endlessly about the same things. So a leap into the 20th century seemed like a good idea for keeping anyone who wants to know informed - and maybe give me an outlet for venting spleen (while I've still got one). My apologies if the latter means there is too much information. And before I continue - thank you to whoever sent the mystery flowers...I haven't been able to track you down, but it said 'With love x' on the tag How did I get here? On 20th January, I cycled energetically to GP with 'a change of bowel habit'. GP found lump in my belly - referred me for colonoscopy. I r...