[Stick with this for the amazing comedy and light relief at the end]. Apologies too for the headers on this blog entry – my thoughts are a little disorganised and I need to structure this all somehow, otherwise it will look like a Jackson Pollock wall-splash.
I’m not going to lie. These past few weeks have been hard. A bit like being dragged through a long bramble hedge backwards naked maybe.
My last update was late August/early September here I think. I’d just had my second dose of SIRT treatment which is a radiotherapy direct to the liver, where really my BIG problems with this bowel cancer lie. I was lucky to have SIRT, it’s quite an involved therapy with a full team procedure and overnight stays – though they did have to split the full dose into two doses (so I’ve only had one full dose and that was the second part) – because the hospital team were cautious about the overall effect. It’s heavy stuff.
I also had chemo two days prior to that that second dose (5FU only) just as a little get lost cancer booster.
After that SIRT, I didn’t feel great. I lost my appetite, weight, and energy. I was being sick a lot and food smells just made me nauseous. Despite this, my lovely husband (SPL) managed to get me away for a sweet week of attempted calm right around the Cornish peninsula. We saw some sights, did a little bit of walking. I smelt the sea and it was delicious, alive and glorious. We rested and were together away from cancer for a bit as much as we could be, which is important. Days can definitely get too cancery if you let them.
On the trip I’d noticed a yellowing around my eyes – just starting to turn at the edges. Having seen my father’s jaundice prior to his death of pancreatic cancer in my late teenage years and this development in me really scared me. I took daily pictures of my eyeballs and whatsapped them to my mother, which is kind of funny if you think of her just opening daily eyeball updates, but she’s an ex Nurse with a life career under her belt and she knows her stuff. I’m grateful to have had her looking at pictures of my pooh too (:-)). We organised with my oncology team that once back from Cornwall, I’d go and give bloods in prep for me starting back on my chemo regime. A regime that looks like it may have been working for me based upon one scan ( it’s Capecitabine and Oxaliplatin) after 5FU and Cetuximab had failed.
I did the bloods and there was no way I was going to be doing chemo that week, I was even more yellow and we went into the hospital triage unit to be assessed. I was CT scanned, with the result that they could see radiotherapy based inflammation in my liver, that my bile duct(s) weren’t blocked (but that they were very swollen) and that because of this, we needed to immediately go onto a course of steroids in the hope that I can overcome with time this liver inflammation period, in order to even approach a chemo regime again. Sometimes they can stent your liver to remove toxicity and this bile sort of accumulation, but there’s no single place they can see to stent…in me, it’s all-over liver inflammation. So as it stands at present, I’m about 2.5 weeks into a steroid course now and under instruction to rest, drink/flush as much as possible, gently walk, and wait. It’s hard to be in this limbo and to have no control of whether there will be improvement of any further kind – but I’m following the orders and hoping that things brighten, as this really all is such a balancing act and that’s all that can be done. Facts are facts, my dear lovely reader and life comes incomplete with guarantees.
Against this background my bloods also relay some further confusing results. My CEA (these are tumour markers) level is falling and looking more stable, more controlled, and my oncologist still (as yet) isn’t ready to press the red button on me due to this. So – on the one hand, the SIRT has seemingly been killing my cancer, but also doing me over too.
Prior to one of my recent oncology appointments, I was asked to fill out a survey about how I was feeling. My hospital have started another phase of some research project aimed at making absolutely certain that patients with cancer are treated adequately for the mind as well as the body. I filled it out properly, not really thinking that my answers were in the ‘great’ camp, or the ‘terrible’ camp. I thought I was middle of the road and about getting by, and my husband thought my honest answers lay around that field too. How wrong I was. The next day, a lovely Macmillan psychological services nurse contacted me to discuss my survey. They were concerned and we had a long chat on the phone about everything that’s been going on in the now, nearly 11 months since diagnosis period. I opened up and found that I cried frequently though the conversation and really, finally, finally, the bombshell finally dropped in me that I haven’t been coping. I have taken round of round of punishing news, and there’s no wonder that clinically I am showing signs of depression. The nurse organised another telephone consultation with the lead psychiatrist, which I had, and they have progressed me into a now fully comprehensive (haha this sounds like insurance) psychological support framework that I am completely in awe of. This is to involve a three stage approach – 1) clinical antidepressant meds (I raise my hand to say they are necessary here – I’ve coped with bad times before, but never THIS time before), 2) a behavioural therapy programme, aimed at showing me that I can stop isolating myself, and 3) structured and planned activities to give me weekly senses of achievement – things that I have to do and show that I have actually done. These all sound so laughable, like baby steps, learning to walk again perhaps. Though the more they talk of how they want to help, the more I want to cling to the scruffs of their collars and let them hold me up some more. I’ve been having wonderful side counselling too, incredibly free too via a cancer charity that was via webinar from a superb lady – but in the midst of all this feeling unwell, somehow I’d let that all slip away and if you don’t hold tight in this game you lose grip.
The psychiatrist will monitor my meds, my drug interaction (in light of my liver problems etc) and will work with my oncologist to keep a flow of information. The Macmillan psychological nurse will lead the other services. I will attend weekly sessions and at each session I will be being observed very firmly. I feel at last in a way that I can let out this big breath that I have been holding in, and it feels good.
My treatment team – thoughts:
I may have mentioned that I transferred my cancer treatment over to Oxfordshire in February, so that I could basically be looked after in my old childhood home on chemo rough days while my husband was working. We still have this blasted mortgage to pay, Oxford’s not far from London and we reasoned that chemo roughness would last days only. Those in essence weren’t the only reason for the transfer. The main reason was that while the nursing, the oncology, the surgical care that I got from the actual Barts hospital (and two special nurses, Trish & Ronnie at the Royal London Hospital (part of the Barts Hospital Trust)) were outstanding; while my Royal London surgical team firmly saved my life (for now) in February, the actual ward experience on the Royal London in Whitechapel was one of the most terrifying experiences of my life. I was left by some nursing staff in screaming pain, with no one to help me and I saw things and had things done to me that should never have been part of any successful patient recuperation from surgery plan. The ward was chaos. My mother spoke to the Ward Sister who ultimately cried and admitted the ward was out of control. Under such chaos, I legitimately I believe feared that I would be killed off my poor nursing and HCA practice. I NEVER wanted to have the possibility of ending up there again, so I completely moved my care. I’m SO SO glad I did (though to the full team at Barts, that wonderful Barts oncologist that fought for me, my Surgical Royal London team and the two RL cancer nurses, I salute you with my all).
Here’s why : the overall difference in complete all-compassing cancer support is astonishing between my London experience and my Oxford experience.
I have a Oxford GP where I can schedule a quick blood test at the drop of a hat, that I can walk across a road to, when I’m in Oxford. I don’t have to make a trip to the hospital for these bloods, as I had to in London because lost of London GPs now just send all blood test patients direct to the hospital queue for centralisation. My Oxford GP is not so overstretched (sadly the story of my long and very problematic route to a delayed diagnosis comes from my old London GP practice, who the health ombudsman have now upheld as performing under par, in my case) as to be able to actually sit up and take notice, to call me to make sure that I do have everything that I need. I have an incredibly celebrated (for good reason) oncologist that seems to answer any enquiry I have at the drop of a pin-hat – despite teaching, researching, basically leading the cancer-wave and taking care of a full family. She fights for me. She advises me that I’m a pleasure to treat (ha!) and I trust her judgement – I know that I am incredibly lucky to have her in my corner. I now have full psychological support that does involve meds. I did have psychological support at Barts which was very good, but somehow and maybe it’s because it seems to be more in liaison with the oncology team in Oxford, I feel more comfortable that me as a whole, mind and body, are being considered at every check. I don’t know whether the oncology and psych teams were as connected in London. I have a triage unit that the nursing staff aren’t overstretched on. I have a cancer overnight ward that I am not scared to end up on and I do not fear for my life on it, working about how the nursing will make me even worse. CT scans can be quick. Results seem quick. The hospital as a complete site functions together and works – it’s not just that little parts do their bit and don’t speak to each other to poor result for patients. Services in Oxford seem remarkably joined up and the difference is marked.
So, how did we get to a state where treatment can differ so wildly and patient outcomes can differ so incredibly? An decompartmetalised and fragmented NHS – with fracturing of services for ‘cost-effectiveness’. That’s my answer anyway and I’m sticking to it. If you ever feel that you could and should be receiving a better overall service elsewhere – you probably can. If you can, vote with your feet and vote earlier than I may have managed – I would advise it. Vote sensibly at the next election. Complain. And please, please, fight for your NHS, because it might not be now, but one day you will need it. You will need it to work.
Autumn and cycles:
I’m in love with the Autumn. The colours I see changing every day, taking away the bright brights of Summer to a rich mosaic of tones is beautiful. Nature reminds me that everything around us is a cycle and it’s all matter. As humans, particularly in the West, we do like to try to pretend that we have control and the upper hand over our environment. We pretend we are somehow kings, lords of our land and exert a total influence on our daily outcomes – ‘do this and that will equal X’. Basically, the grand illusion. Autumn and all seasonal change reminds me that there is flux and there is great comfort in that. It means that nothing is directly set in life, and that’s OK.
THE COMEDY RELIEF (at last – thanks for sticking with me kid):
In the waiting room for a my last-but-one oncology meeting, patients were sat very quietly in prep for their consultations. That’s not that strange, it’s always quiet. People are all jolly but at essence always petrified.
A guy came and sat very much on his own, hunched over at a bank of blank seats and stared at his phone – watching something quite intently. I was watching him, because I watch people while I’m waiting. We cancer patients all seem to like to sum each other up sometimes – nothing mean in it. Its like weird comradeship.
So… the guy sits there and then seems to maniacally keep pressing his screen. Suddenly into this space of absolute silence came the noise from his phone of scripted ‘Ooooohhh ooohhhhh AAAaahhhhh ahhhhhhhh yeaahhhhhhhhh ooooohhhhhhhhh‘. Yer man was blatantly watching porn in prep for his oncology appointment! A bit of light relief perhaps, no biggie, his choice and upto him, what suits the wearer etc…. Except that he’d managed to megablast it right though the whole cancer waiting room by unmuting it! It was absolutely hilarious. That guy took away the momentary fears of that whole room and united us in collective laughter – porn guy was the hero the room needed at that moment in time! I kind of want him to appear at all appointments from now on. He successfully turned his porn off or back onto mute, and then moved a bit closer to the oncology room doors. When the nurse called him through he looked pretty relieved. Bless you porn man.