I’m 34 years old and I have secondary breast cancer which has spread to my spine, ribs and hips (along with several other places). Until recently I was taking the drug Palbociclib but now my cancer is waking up again. As a result I’m on Exemestane and Everolimus. I was also prescribed 3 weeks of radiotherapy for my right breast. I’m now halfway through the radiotherapy, so this blog is about how I’ve been getting on.
Don’t tell the patient!
So when I heard I would be getting radiotherapy I was nervous but curious. I wanted to know what would happen. My oncologist (who I am starting to genuinely distrust) told me it would hurt. When asked what the benefits were she told me it would hopefully slow down the cancer. She was rather annoyed I had refused to agree to IV chemotherapy so wasn’t feeling chatty. Apparently wanting to maintain a decent quality of life for as long as possible is “not helpful”. Personally I’m not sure I’ll do chemo. I’m certainly not jumping treatments to start it! But she referred me for a planning CT scan and sent me away with a smile and kind word so I don’t think she is too angry 🤞. I was promised answers at the scan though about radiotherapy. I like answers!
So the day came for my planning CT scan. I sat down with the nurse to be told I wouldn’t be told anything that day as they didn’t want to “overwhelm” me by telling me the details. When pressed she said a big machine would deliver the radiotherapy. I then asked about side effects several times and I was told to buy a moisturiser without SLS. They promised I’d get all the answers on my first day of radiotherapy treatment. Eventually I was offered a link to some e-learning on life after treatment and survivorship post cancer. When I pointed out that I have stage 4 and won’t survive my cancer they looked awkward and offered me a parking pass for the duration of radiotherapy. In other words all I knew was buy moisturiser and prepare for a “big” machine 🙄. Strangely enough I didn’t feel prepared!
I then went in for a CT scan where they lined me up on the table in the same position I would be in for radiotherapy. I had my photo taken so they could make sure they were giving the right person radiotherapy. My photo was awful! They then started drawing crosses on my chest and sides – not a great time to be ticklish! 😂 I then had the planning scan which was fine. It was actually nice to have a scan without stressing about getting my results back! Then came the bad news. I had to get tattoos. Not cool tattoos either. I now have 3 very small black dots on my chest so that I can be lined up properly under the machine during radiotherapy. I was then given a list of radiotherapy appointments and ushered out of the door with a reminder to avoid SLS in my moisturiser. My first appointment was in 8 days time.
Cancer Twitter is awesome
Needless to say I was feeling rather overwhelmed by the lack of information I had. In fact I was terrified. So I turned to Twitter. As always the incredible people of cancer Twitter leapt to the rescue. I was sent tips, information about side effects and even videos of how it all worked. Panic over. I was ready for 1 May 👍
Erm can you come back tomorrow?
On 1 May I was ready and actually quite enthusiastic about starting treatment. En route to the hospital I saw I had a missed call from an 0300 number so I phoned back to get disastrous news.
After my scan, they designed a treatment plan for me. This would make sure my cancer got zapped as much as possible and my healthy bits would be avoided if possible. However, the plan wasn’t finished 😭. I was asked to come back the next day and hopefully they would be ready to begin. To put it mildly I was upset. They didn’t apologise, they just told me to come in the next day when I would get a briefing and start radiotherapy – they hoped.
Have you read my notes?
May 2nd dawned and I went to the hospital feeling more and more optimistic as my phone didn’t ring. I was called by a radiotherapy nurse and stood up to be told my plan was finished – they just needed to find the oncologist to approve and sign it 🙄
Once they did that I finally got my briefing on what to expect from radiotherapy. I got a hilariously generic sheet of paper with advice about side effects of radiotherapy on any part of the body for anyone. As a woman I’m not sure I need to worry about erectile dysfunction – at least not my own 😂. I was asked about what I preferred to be called. I was asked if I’d had surgery on my breast – at that point I got nervous. Surely they should know that? I was given new appointment times and faced the usual confusion when I said that I still work full time. Why does that always confuse people?
Then the radiotherapy started. I was asked to remove my top and bra and to lie down on a metal table. I was moved into the right position with lots of soup and ants being mentioned! Apparently it’s all about the angles! At first I thought they were calling me fat! 😂 (I’m paranoid) Then the lights flash on and off while a siren rings out. That is the signal for the staff to leave the room so I can get zapped. For what it’s worth, the radiotherapy machine really is big!
For radiotherapy on the breast you have to lie down with your arms above your head. This is surprisingly painful after a while. But basically you lie there while a very big machine moves around you and a silent invisible beam zaps you. At my unit they play music for you. A few days ago they were playing the Footloose soundtrack which is not helpful when you are trying to stay as still as possible! 💃
The radiotherapy team are lovely but they don’t appear to be told much about their patients. I’ve constantly had to remind them I have bone mets ☹. At one point they accidentally bashed my back against the table and I was in agony all day 😭. They also grabbed me by the ribs to move me. Ouch! The other challenge has been male staff being in the room. I have to admit that I felt really uncomfortable the first time it happened as my husband is the only man I’ve let see me naked before! Now I’m used to it I just walk in and pull my top off! 😂
8 down and 7 to go
Today was a great day. I reached treatment 8 of 15! Only 7 more doses to go 👍
In terms of side effects I do feel a little tired. Unfortunately the Everolimus is battering my immune system fairly hard which isn’t helping. Exercise seems to be helping though. Overall my skin is coping ok. I have one very sore point where the cancer had actually reached the skin and they are really targeting that area with the radiotherapy. As a result it is raw and very sore. But the radiotherapy staff are doing a brilliant job of monitoring it and giving me special dressings for the area. The rest of the breast I’m drowning in moisturiser and it looks and feels great.
Overall radiotherapy is proving hard but doable so far. I am however aware that the side effects will get worse before they get better so I’ll see what happens 🤞
The one thing I do know is that even if I’m asked I won’t be ringing the end of treatment bell in the unit. As a stage 4 patient I hate seeing it every day, let alone ringing it.