so we’ve been here since 9:30 am and only just succeeded in getting the cannula inserted. apparently being cold, not drinking hot drinks and being terrified mean veins are reluctant to appear. Anyway, one sauna-like room, two cups of tea and some dad jokes later.. a nice Romanian doctor got the bugger in. So chemo is en route and I’ve actually already had the Herceptin, which was fine. I has that in the thigh and it was just a 2 minute long injection. It does feel very good to feel there’s medicine in me, doing its thing.
A very busy day today. Adam passed his driving test! Woot woot! My mum and sister came down to do childcare while Adam came with me to the hospital for an info session on the upcoming treatment. And I went to my first ever breast cancer support group. Well, my first ever support group. A surreal time but my new life in full effect, at least for the next year. So there was a barrage of information about chemo. Highlights include; make friends with power naps, call them if my temp goes above 37.5 degrees (no exceptions), my bones will ache, my hair will likely fall out, I will oscillate between diarrhea and constipation, treatment is 2 hours on a drip, got to stay 6 hours on a second day for the Herceptin. On the plus side, pineapple and ginger are my go-to foodstuffs to help with everything. I have my own room with a telly and a view. The nurse is AWESOME! And the bleeding chef came to ask my for my order on Wednesday and will prepare me special vegan treats. Ah, if only the NHS had enough funding to be like this for everyone. Weirdly, the nurse told me 70% of their patients are from the NHS. Short-term budgeting in all it’s tragic glory. But bonus for me, I get access to a ‘quiet room’ designed by Brian Eno ;-p
After all this I went to my first breast cancer support group and at first it was a bit intimidating and alienating. On the programme tonight was a make-up artist who came to educate us all on how to apply primer and look natural (wearing products). I think it’s cool if peeps wanna feel good doing that stuff and if it helps them on their ‘cancer journey’. But to me it kind of felt like we were all learning how to mask our illness. Paint on those eyebrows, pencil in the defining line of eyelashes. Don’t look sick. She didn’t tell me how to replace the nose hair I’ll lose and deal with the constantly runny nose. I don’t want to end up looking like a caricature of myself. I’m sick and I’ll look sick. Ironically not from the disease, but from the cure. Anyway I opted for an aromatherapy massage instead of finishing the make up demonstration. A good choice. The lovely masseuse talked to me about my cancer and then gave me a wonderful head, face and hand massage with Neal’s Yard oils. It instantly brought back some sense memory from days when I regularly burned essential oils to relax. Strangely the massage was in the ‘bad news room’ and now it’s been totally transformed for me. So a great therapy on many levels. I went back into the main room, feeling relaxed and less edgy about the poor make-up girl. It was near the end but a woman approached me and we instantly got chatting about all things cancer. Most people there were at the end of their treatment or just waiting on reconstruction. I was the only one at the beginning. So we talked as fast as we could, blah blah hair loss, blah blah implants, blah blah cold cap. That last bit of blabbage was very useful and exactly why I wanted to come to a group populated by wise bosom women. I’ve been offered a cap that is filled with cold gel and apparently it slows down cell replication, therefore protecting hair from the chemo drugs. You wear it for half an hour before chemo, during and 2 hours after. So it extends the chemo for a few hours and is also extremely uncomfortable to wear. The women used the word ‘torture’. As I’m not too bothered about losing hair, I think I’ll go for less intense hospital experience and just shave the bugger off. They also told me about the infamous ‘chemo curls’ that come back after treatment. Hugs all round at the end and the fastest friendship I’ve ever made. Now I’m gonna chill with the family and see if Lilah will go to bed on her own (with her cousin Shaye in the same room). Maybe one more family milestone to come today.
I just sat down and mapped out my life according to chemo. In order to maintain the illusion of control I have colour coded the coming weeks in the traffic light system (which doesn’t entirely fit but I like the symmetry). So RED = post-chemo feeling like crap. AMBER = feeling better but I’m most vulnerable to infections. GREEN = Getting back to normal before they zap me again. I’ve filled in the calendar up to the last cycle of chemo so this puts me finishing the whole course on 24th June. It does actually help a lot to see the end of it in black and white (and red, amber and green). Something to head towards. Like running a marathon. Not that I’ve ever run a marathon, nor intend to. I do imagine it’s a lot like this, but without the sweat and blisters. Another marathon analogy though is that I really feel like I’ve got crowds cheering me on. And not like that time when I accidentally cycled into the finishing leg of the London-Brighton bicycle ride and undeservedly gained the claps and hoots of well-meaning strangers. From digging my allotment, cleaning my house, watching the kid, to sending care packages, writing supportive comments and listening to my ravings, everyone has shown me the best of humanity. In particular, my small section of humans has filled with me love and comfort in the darkest of times. I salute you all! And keep it coming…
Lovely Bosom Buddies, I am in search of a few brainy types to help me to the mountain of research I have to get through and help me figure out if there’s any genius ideas to help chemo work better. The first thing I need help with is FASTING. I’ve been hearing from a few different people and reading a bit about it online and it seems it could help with the effectiveness of chemo. So this is something I need to figure out in the next two days. Is anyone up for it? I would suggest we use the blog as a way to discuss what we find and post articles/sources for others to read. I would like to treat this like any other investigative article or research project and be systematic and rigourous. There is a LOT of shit and semi-convincing woo out there. Who’s with me?
I just booked my Bone Scan to happen in the Nuclear Department of the hospital. Yikes! On the info letter it says, “the radioactive material used in nuclear medicine examination will continue to emit radiation.. for many hours after the examination.” I’ll be injected with 200 X-rays worth. This means that I cannot cuddle Lilah for the rest of the day and she was not happy about this. I’m having this procedure to see if cancer has spread to my bones. Apparently breast cancer is VERY into lungs and bones. Anyway one yoga session, hot bath, visit (with treats) from a good friend and much cyber love, I’m feeling chilled about it. Well until I start glowing of course..
P.S. As being in close contact with gamma radiation seems to provoke a superpower in people, Adam wants to know what you peeps think mine will be?
I just got a phone call from a private hospital called the Montefiore who are supposed to be giving me my first chemotherapy treatment because the NHS are too booked up. I’m going to have an information session on Thursday this week and begin the treatment next Wednesday 18th. The nurse wanted to get me in sooner for treatment though so that could change. My oncologist had told me that after the first cycle I will then move to the local NHS hospital Cancer centre. But the nurse from the Montefiore seems to think I will stay there for the whole time. When I expressed doubts about this, she did a cancer sales pitch offering me a private room with a TV and free lunch! The NHS centre is just up the road though and gives free massage and hypnotherapy. Beat that private healthcare devils ; p I did make the mistake of looking at their website and the rooms are incredible though. I doubt I have any say in it anyway but it was very strange to get people competing for the chance to carpet bomb my body with drugs. Despite that minor issue, I’m feeling pretty relieved that it’s happening and anxious to get started. I am imagining cancer cells busily replicating like in a time-lapse sped up movie. But I am nervous about the treatment and the side effects. One set of anxieties about it starting has evaporated, to be replaced by a new shiny set of uncertainties and fears. Each part of this process seems to be a continuing cycling through of fear, anxiety, relief and then back to fear again. So onto this next cycle of not just treatment, but of emotions.
Hallo Buds of my Bosom. I just got back from the echocardiogram which is like when you get a scan during pregnancy but a bit higher up and less joyful. Plus you don’t get a picture at the end : ( Anyway it was all fine and at least one part of my body is in good working order. So this means I can probably get the extra drug Herceptin for added whammy factor. The reason I put my lunch as the photo for this post is because I felt I needed to purge what I saw at the Cardiac Outpatients reception area. A room filled with very sick people and the walls covered with education posters promoting 5 a day. Someone, somewhere thought it was entirely appropriate to do a fundraiser for the unit by selling sticky, gooey cakes! Thankfully it seemed the main business he was doing was with stressed out staff members and not the patients. The government posters won out. So I got home and reheated my soup from yesterday and whipped together a wee salad. Thought I might share the recipe and spread the 5 a day love:
Celeriac and celery soup
4-5 stalks celery
3-4 cloves garlic
2 cubes of vegetable stock
Fry up the onion in some olive oil til it’s transparent on a low heat. Skin the celeriac and chop into cubes. Throw them in first and stir. After a couple of minutes throw in the chopped celery. Stir for a bit. Add in the chopped garlic. Boil a litre of water and sprinkle the stock cubes into it. Add the stock to the veggies a third of a litre at a time, leaving it to come back to the boil each time. Make sure the veggies are covered in water, add more boiled water if a litre isn’t enough. Add salt and pepper to taste. Put the lid on and bring back to the boil. Simmer for 20-30 mins. Whizz in a blender or leave chunky. Voila!
Mango and Rocket salad
Throw the leaves, chopped tomatoes and mango into a salad bowl. Add a tablespoon of olive oil and a teaspoon of vinegar. Toss. In a frying pan dry fry the seeds til they’re golden brown. Sprinkle on top of the salad just before eating.
Enjoy! There’s 2 of your 5 a day : )
My lovely and talented auntie Phil just gifted me a free haircut. So when/if the chemo makes me lose my locks, I won’t wake up to huge chunks of hair on my pillow. Apparently if it’s gonna happen, it’ll happen fast. Ironically and satisfyingly, my homeless ponytail will find a new purpose as a wig for someone else with cancer. I did consider for a second that maybe they could weave my own hair into a wig for me. But it seemed too serial killery 😛
Lilah and I also got our nails done by my amazing cousin, Karen. Something I have never had done but it was wonderful to feel pampered and who doesn’t love glittery fingernails.
So now for the medical bit. I got another call from my oncologist and it seems my cancer has the HER2 protein which means they can give me another drug. This is a good thing. And my chemo drugs have been changed a bit. Also I need to have an echo test to check on my heart as one of the drugs can affect the heart. I made an appointment for this on Friday. My chemo is also now going to start earlier so I should be starting next week. I feel reassured and slightly panicked by this prospect. But thanks to awesome family types, I shall be the most fabulous cancer patient in the place 😉
So we just got out of the oncology meeting. The results showed that the suspect lump on the left breast is not cancer. Yay for lefty! The results for the right lymph node was cancer though so they’ll have to go in surgery. It doesn’t necessarily mean the cancer has spread outside the boobs and could be the lymph nodes just doing their damn job. So not the worst case scenario. Anyway there is a second very tiny lump in the right breast (where the big original lump is) and they want to compare that to the benign lump in the left breast to see if it’s the same. They will do this in their joint meeting this afternoon.
If they decide it’s the same looking as they benign lump then we go ahead with chemo straight away and speak no more of lumpy no.2. If they think it’s worth looking at I may have to go for a biopsy but because it’s so small, it will have to done inside an MRI scan. This sounds awful and I really don’t want to do this. Also I’d have to go to bloody London to do it. But we will know tonight about that. Also if lumpy no.2 is cancer I’ll have to have a mastectomy.
On the plus side, the oncologist is a human person and we really liked her. Now we’re relaxing a very hipster cafe called “Rust” with ivy flower arrangements and dried sunflower heads as decor. It’s brighton-tastic! I’m drinking ginger and lemon tea and watching the snow fall, while congratulating my left boob for its cancer resistance.
Today Lilah and I went to the archaeology day at Brighton Museum. A happy photo right? What you might notice though is the bags under Lilah’s eyes. She didn’t sleep until nearly 11pm last night because she wanted me to put her to bed and I was too tired. At her drama club on Thursday they were enacting the Edward Lear poem ‘The Jumblies”. In the poem they set sail in a ship made out a sieve. The teacher asked Lilah what treasured item she wanted to take on this long, imaginary boat journey. She said “Mummy.” She normally replies “chocolate.” And at the event today, I couldn’t go more than two feet from here without a frantic shout. I’d say she’s definitely been feeling some consequences from me suddenly becoming ill. Thankfully, spending the day together seemed to have taken the edge off her sense of loss and fears and she’s sleeping soundly now.
I realise though that I have some disturbed feelings about the last couple of days too. Since Mum and Dad left, Lilah and I have done some of the things we would normally be doing. Going for playdates, meeting friends, doing home ed activities. And it all feels off. Somehow seeing people and doing everyday things makes my illness increasingly abstract yet more concrete at the same time. It’s a strange existence, being one foot in my old life and one foot in the new one. I prefer it when we’re taking action of some kind, even if it’s throwing out old stuff or clearing a work surface of bank statements and junk mail. Perhaps this state of alert and preparedness is the process of easing myself from one reality to another and I should embrace it. I know that I can’t stay in emergency mode forever as that will do it’s own damage. But I think I need it a little while longer.