Radiation photos

30/8/13

In case you're interested, I'm goiong to share some images of the effects of the radiation on my supraclavicular area and underarm. Radiotherapy affects the basal skin layers, so I was encouraged to keep my skin moist during treatment by using thick sorbolene cream at least twice a day, at least 2hours before treatment, and immediately after. Over time, the lower layers of skin cells rise to the top, so the skin can continue to show changes for 2-4weeks after treatment. The area on my collarbone started to become itchy in the last week of treatment, so I was given some steroidal cream, and adhesive dressings called Mepilex, that gently stick to the skin and protect it. The skin started to appear a little broken last week, so I was told to keep on with sorbolene, avoid using the steroid cream on the broken area, and continue with the Mepilex. Skin started peeling off when I removed the Mepilex last weekend, but the nurses said it would probably peel off anyway, and I had to keep applying sorbolene. My collarbone area has become more itchy over the last couple of days, and I'd run out of mepileagain, so I went back to the lovely nurses at the Holman Clinic, and they gave me some Flamizene to put on thickly, once a day.

It looks worse than it feels - I still have a large numb area under the mastectomy scar, so I can't feel the underarm area at all. Lucky in one way, but I worry that the lack of pain removes a means of feedback in case I get an infection. Although I'm told that infections are uncommon, I've experienced enough uncommon side effects in the last 7 months to be wary. Alert but not alarmed ;)

These photos show the way my skin has changed over the last couple of weeks. The first two were taken in the final week of radiotherapy (last week).  The second pair were taken at the beginning of this week, and the last two were taken today. I may add more over the coming weeks. 

The black dots in the hair follicles are just increased pigmentation, I'm told. There are some wrinkles in my skin from the support singlet I wear (bras are too uncomfortable), and there is a build up of sorbolene in the wrinkled skin under my scar.

Side effects continue

Merde! Ben has noticed that food tends collect on my left lower lip. I'm not aware of it until he points it out. Its been happening for the last week.Also, he noticed this morning that my  mouth is a little  asymmetrical when I speak or smile (less movement on the left). He said to call my rad onc. , who said he'll see me this morning.

Great way to worry a neuropsych! I tried to capture it with a selfie, it's not pretty. Even my grimace is lopsided. 

I'm not great on the cranial nerves, but if my face is affected, maybe my tongue is weaker on one side too, contributing to problems swallowing the excess saliva, and the feeling that my voice is slurring.

I'll hold off on publishing this, as it scares me, and I don't want to worry anyone unnecessarily.

Back from seeing my rad onc, who says he "spent a significant amount of time as a neurology registrar." He says it's probably a post-chemo peripheral neuropathy involving the facial and trigeminal nerves, causing a subtle asymmetry of the mouth and reduced sensation on the side of the mouth (hence my unawareness of food there). He wants to see me each week, or if something changes, but is confident that I don't need any additions tests or to see a neurologist at this stage.

I'm feeling shaken. Slightly relieved, but still worried. I thought of peripheral neuropathy as being  something thAt affects hands, fingers, feet, and toes. Not the face. Google reassures me that it can happen http://chemocare.com/chemotherapy/side-effects/numbness-tingling.aspx#.Uh1JUmQayc0

I'm so grateful for the Internet! We're getting the NBN connected today, so I'm looking forward to even faster downloads to satisfy my insatiable hunger for knowledge.

I'm going to take a video of my face doing the contortions I had to so for the neurological exam this morning, so I'll have something for comparison over time. Ben says I should go to Melbourne  to see one of my neurology colleagues and get an MRI if it will reduce my anxiety, but I think it would increase it, and would also make the boys worry. It would be incredibly bad luck to have cerebral metasteses so soon after finishing chemo, especially when I was clear of mets when I was diagnosed. 

I guess this is the anxiety about recurrence hay people go through after treatment for cancer. I'll work on being alert, but not alarmed. And get started on B- group vitamins and folate.

I'm so glad spring is coming.

Four zaps to go!!!

And then ten years of tamoxifen...

It's a glorious sunny day in Launceston, I'm sitting in the sun, letting the wind ruffle the fuzz on my head,and the 15 eyelashes that David counted last night (7 on the right, 8 left). My eyebrows are still missing in action, but my salivary glands are making up for lost time by producing lots of thin saliva (did you know there are two kinds of saliva? Me neither!). So I still feel like a perpetual Pavlov's dog, and apparently sound like I'm drunk (thanks cuzzy).

On the up side, I'm now finding sudoku puzzles easy, I used to struggle a but with the easy ones, now even the hard ones aren't too bad- unless I was doing an easy batch! If I've lost any cerebral white matter volume during chemo, maybe it's been a useful pruning...

Monday 19th August 

It was sunny on Friday, then it rained furiously over the weekend. Reminded me of the wettest Tasmanian winters of my childhood. Good weather to stay indoors, and rearrange furniture!

I had my fourth-last radiotherapy session today, Ben and I are going to have lunch at Stillwater on Friday to celebrate the end of it. My skin is holding up okay, though it probably helps that I still have no sensation over my mastectomy site. The flesh around the scar has developed little  spots that look like blackheads, but my rad onc says it's just increased pigmentation. The area under my arm is quite red, as is the bit on my collarbone, but they don't hurt. I've been given some steroidal cream to use twice a day. 

Apparently, the 'new' radiotherapy doesn't burn people as badly as the old radiotherapy, where skin used to peel off in sheets. I'm glad I haven't heard any of those horror stories, it's bad enough to lie on my back each day, arms above my head, knowing I'm being blasted with gamma rays in a lead-lined room with a lead-lined door. I try to forget about Marie Curie getting cancer after experimenting with uranium,and the increased risk of cancer with exposure to radiation. I've put my trust in my oncologist, who convinced Ben that I would be well-cared for over here, when Ben wanted me to have my surgery and possibly treatment in Melbourne. That would have made things so much harder.

I'm trying to improve my diet- getting rid of fructose is the first thing. It feels slightly hypocritical to consume sugar after going through all this treatment, given that cancer cells need sugar to survive. But without another cook in the house, it's easy to succumb to sweet comforts. 

I'm feeling rather tired, not as bad as at the end of chemo, but I still don't have the stamina I had before. I'm also starting to feel a little set adrift now that the bulk of my treatment is over. I'm getting small flahes of awareness of the stress I've been under, and I suspect I'll be having a good cry when it's all over. It's hard to balance my body's need for recuperation with my life-long compulsion to stay busy. I know this need to slow down and recover is important, but part of me is fighting it, so much of my identity ha been tied up in my career, it's challenging to imagine who I am if I don't work, if I'm not striving for something.

Wednesday -sitting in a cafe with the boys, before seeing the physio. Feeling a bit tearful this afternoon. this morning, i tried to ask my rad onc about what happens next, he spoke about regular reviews, calling him if I have any concerns... I tried to argue for MRI rather than any more mammograms if I need repeat scans, but the evidence base isn't there yet, apparently. MR spectroscopy is supposed to be sensitive, but isn't available here yet. What I really wanted to ask was what do I do now? How do I cope now that the structure of chemo  and radiation is over? How do I get my life back together? Will I ever have the energy or inclination to do the things  I used to be passionate about? 

I didn't ask because it was hard to break through his jocular exterior, there were two medical students there, and I'm a coward when it comes to asking for advice about things that scare me. I can write it down here, but to vocalise it would bring tears to my eyes. After all I've been through, I still don't like to cry in front of others. Don't want to make myself vulnerable.

People are funny things.

No regrets

The rain set early in tonight

The sullen wind was soon awake...

It's a very wintry night here in Launceston, and the lashings of rain on the roof and windows keep summoning  Robert Browning's words to me, though the sad delusions of Porphyria's lover were forgotten until I read the poem again just now.

Ben and the boys are asleep. David had a fever earlier, and still has a hacking cough, which has lingered for over two weeks. I'm enjoying the silence of the house, the music of the rain, a slow and constant pattering with accelerandos of intensity, and diminuendos that change to sudden crescendos, like a overly dramatic orchestra summoning a swirling, dancing, frenzied mood.

I'm feeling very still and centered lately, as if all extraneous material has been swept away from my life, and I can now see the most important things with exquisite clarity. I feel, in a way, as if I am truly alive and aware for the first time, though this feeling is coupled with a strange affinity for moss growing on a damp log - time seems to pass very slowly. I still get upset and frustrated (for example, when Nathaniel refused to go to school today, saying in his baby voice that he just wanted to be with mama), but I can let go of it more easily than ever before, and things that would have had me distressed in the past seem to flow like water off the proverbial duck's back.

I can see how I previously avoided conflict and distressing feelings by keeping busy, and it seems to me that I have been sleep-walking for much of my life - particularly with my children. This may have been partly due to the chronic sleep deprivation of the past nine years, but I'm also aware that I spent far too much time being distracted by emails and reading endless interesting things on the net, rather than truly being present with my kids. Reducing, or almost eliminating, access to electronic playthings has helped improve connectedness in our household, though I still sometimes rely on them to give me the peace I need for an afternoon rest.

I feel sad for time that was not spent as well as it could have been, but it was all part of the path to being here, now, thankful for our many blessings, determined to make the most of every moment, and to cherish watching my boys grow up into fine young men. Non, je ne regret rein.

21/28 radiations

I had my 21st radiotherapy session today, and I'm feeling wrecked. So I'm celebrating this milestone with a quiet day at home. I've walked Ginny down the road and back, fussed over Rosie twice, and met a three-month-old ball of fluff that wasn't put off by Ginny's size. I've had sardines on toast for lunch, and now I'm in bed, preparing for a long nap before I collect the boys from school. We have to see the GP at 5, as we've all had a cold that's been going on for over two weeks now, and I don't like the way David is coughing. Antibiotics haven't helped, it's probably just a lingering virus, but I'd rather get us checked out. 

My skin is only just starting to get irritated by the radiation. It's quite red under my arm, and there are a number of spots over my collarbone. They're not sore, but a nurse at the clinic has given me a foam-like patch to put over them to protect the skin. I'll be seeing my rad onc on Wednesday, so I'll be able to ask him about the rather odd symptoms I've developed - the old childhood scars on my knees have become red and itchy, and I'm producing an excess of saliva, which is rather embarrassing when I talk, because I have to swallow repeatedly, or sound like my mouth is full of slobber. I'm not having any swallowing problems, my salivary glands just seem to be overactive. Ben wonders if my oesophagus is being affected by the chemo, but it shouldn't be, darn well had better not be affected, and I'm not having trouble swallowing food or water. Overall though, radiation isn't as bad as chemo, and while it won't be pleasant if my skin starts to feel sunburnt, I can live with it.

I've been doing some reading about recovery after cancer, and one source said that recovery takes about one month for every month of treatment. That will take me to march next year. I'm feeling quite withdrawn, in a centered kind of way, and don't feel any great desire to get back to work quickly. I still need to recovery my strength and deal with the fatigue. I miss the people from work, but felt shaken after talking to one of the OTs who I saw in the hallway this morning. It was confronting to talk to someone who was concerned about my welfare on a personal level. Blogging has helped remove me from needing to talk about it. I know that people won't be in my face about it when I do go back to work, but sensing other people's concern for me makes it all feel more real, somehow, and it makes me feel vulnerable and upset. I'm not sure why, and don't feel like exploring it right now. In addition, I found it slightly distressing to hear other patients chatting about their diagnoses and progress in the waiting room last week, so I don't know how I'd cope with taking histories from  patients. 

It's too early to think about work just now, I know. It's one of those things I need to leave for later, along with the thought of having a prophylactic mastectomy and a reconstruction. I need to focus on my immediate needs, for sleep, nutrition, and loving contact with my beautiful children. 

One thing that I'm very grateful for is the opportunity to have cast aside all the distractions that kept me from fully appreciating my children. I can't get back the time I've lost, but I can make the most of every day from now on.

A sleep window has opened, time to slip through it and dream.