… and there’s bad.

Well, not so much bad, as frustrating.

My meeting with the oncologist was, to put it mildly, less than satisfactory.

I’ve republished the questions below, in blue, and given the answers underneath. Anything in “” is a direct quote, otherwise I’m giving you the gist. If it all reads pretty curtly… that’s a fair representation. My additional comments are in italics.

- Why am I so breathless if there’s nothing disastrously wrong with my lungs/heart/blood count?
- Don’t know. It’s just a side effect. (She did later listen to my lungs and heart and suggest I go for an echocardiogram. We also agreed that although the breathlessness is not great, it’s not getting any worse, and I am managing it better. This part of the consultation was fine.)
Is there anything we can do about my swollen feet, ankles and hands?
- “Not really. It’s the chemo.”
Note: my hands are so swollen that my normally slightly loose engagement ring won’t come off, and my legs go more or less in a straight line from foot to calf, smothering where my ankles used to be. I couldn’t even wear my pirate boots at the weekend, as they wouldn’t fasten over my ankles….. sniff
Note 2: I went to Boots afterwards and bought an over-the-counter diuretic. So there was something that could be done.
- I had a terrible taste in my mouth for about a week after the last round of chemotherapy – this is new, and so are the sleeping tablets. Which is it likely to be?
- “Don’t know. It could be either.”
- The sinus pain which begins as soon as the third chemotherapy drug is administered seems to go on longer and longer each time. Why?
- After checking which of the drugs it was, “You could ask the nurses on the chemotherapy unit.”
- The heartburn is getting worse. Is this normal?
- If the heartburn is getting worse stop taking the anti-inflammatories. You could try Gaviscon. The drug you’re taking (Omeprazole) is the strongest one we have.
- Note: I’m not sure whether Omeprazole is the strongest but I think there are variants available.
- What is the reason for the tiredness?
- It’s a side effect.

- Once the chemotherapy is over, how soon will the side effects disappear?
- I forgot to ask this. I was losing the will to live at this point. My dragon was breathing down my neck to keep me going.
- What about the aches and pains?
- “It’s a side effect. You are having chemotherapy. You’re nearly at the end now.”
- I asked about painkillers and was told to take paracetamol, despite having given a fairly detailed account of (what I consider to be) the unacceptable level of pain I’m in for much of the time. My dragon poked me with her claw. I questioned whether paracetamol was the best course of action. The oncologist said,
- “There isn’t a magic pill.”
This may be the case, but there are several other painkillers/drugs with a painkilling side effect that are listed on cancer help websites as options. I’m no pharmacist, but even I know that there is more to pain relief than ibuprofen and paracetamol.
- When will I be assigned to a group for the ALLTO trial?
- If I get Herceptin as part of the trial, what volume of the drug will I need, and if it’s a small volume, can I have the PICC line taken out after my last round of chemotherapy?
- I asked Kay and Barry these – see previous post. [does little victory dance and grins]
- Is there any reason why I can’t do some nice, quiet, one to one yoga classes during my treatment?
- “No, you can do anything you like, really.”
- Note: that reads badly in view of the previous responses, but I think it was meant kindly, as in ‘don’t let chemotherapy get in the way of you leading your life.’
- Do you want to sponsor me for Race for Life? (OK, I’m kidding. I’m not going to ask that one.)
- Note: I sooooo didn’t ask that one. I wasn’t going to anyway, but…..
I don’t think the anti-emetics I am taking agree with me – they make me feel jittery and headachey. Can we try something else?
- Note: I didn’t bother asking this either: I had a funny feeling that I knew what the response was going to be. Even my dragon was rolling her eyes and sighing, in a ‘let’s stop wasting our time here’ sort of a way.

Grrrr.
There are three things that I am annoyed about here. No, four.
1. Before my first chemotherapy session, the SHO/oncologist I saw told me that under no circumstances was I to suffer in silence, because there were plenty of drugs and plenty of ways to help me with the side effects of chemotherapy.
2. I may not be the most interesting chemotherapy candidate: I’m not fighting for my life or having unpredictable side effects, and I can still walk and talk. But that doesn’t make my own experience of chemotherapy less real, or my pain and discomfort any less valid. Yes, I’m doing relatively well. But I don’t think that means I should get the brush off.
3. Without exception, everyone else I have dealt with so far has been kind and involved and interested. They have done their best to make this dance as easy on me as it can possible be. It’s such a shame that a senior person should be letting the side down.
4. Although I may be nearly done with chemotherapy, if we assume that side effects last for three weeks, I have 6 weeks of dealing with fairly chronic heartburn, joint pain, tiredness, and breathlessness ahead. I don’t think it’s unreasonable to ask for a bit of help, and to be given it.

It’s interesting to get another perspective, and I was fortunate that Joy was with me. She says, “It was her [the oncologist's] job and she was getting paid for it and she just wasn’t bothering at all. She was very rude and disrespectful and she seemed to think she knew best when she’d never experienced it. Everyone else was very nice, and seemed to acknowledge that I was there too.” I got brusqueness rather than rudeness, but it’s fair to say that I wasn’t feeling especially respected.

(My dragon is feeling a little subdued. Perhaps the fact that we were at St George’s hospital took it out of her, too.)

Sooo…. I will talk to the doctor on duty at the chemotherapy unit on Wednesday (with luck, it will be lovely Dr Laura, who I saw last time), and work on my visualisations, and keep my eye on all of the positives. I’m so glad that I had this extremely dispiriting consultation – and these side effects – so late on in the dance with chemotherapy. Three weeks on Thursday, the treatments will all be over. Hallelujah.

(Joy drew a great cartoon of the consultation, which unfortunately doesn’t scan, so she’s going to recreate it on the PC. I’ll show you when it’s done.)