Today we found out a bit more about radiotherapy and the hormone treatment to follow it. We met with the radiotherapy specialist in charge of my treatment and for the first time didn’t have a good experience with a member of staff. She didn’t introduce herself at all, ignored us as we were shown in and continued writing notes for a few minutes after our arrival. Her first words were ‘I need to examine you please take off your top’…not the best start!  Through the course of the meeting she did warm up a bit but seemed to fail to appreciate that this was all new to us and any information wasn’t very forthcoming, but armed with a list of questions we managed to extract some details from her.  It’s amazing what a difference a bit of bedside manner makes, and also how it affects your confidence in their ability to do a good job. I may think about asking if it’s possible to change consultant but in the meantime, this is the info we obtained today.

Radiotherapy is a targeted treatment using high energy rays to prevent a recurrence of the cancer.

Great news, I’ll be having radiotherapy every week day for 4 weeks, and not 6 as had been suggested previously. I’ll have a planning appointment in a couple of weeks and then begin some time after that. I may just manage to squeeze it in before Christmas which would be fab. If not, they don’t treat on weekends or bank holidays so would at least have Christmas Day and Boxing Day off.  Each appointment lasts about 10 minutes, most of which is getting undressed and getting into position in the machine, then a 10 second zap and that’s it. At the planning appointment they’ll make a few permanent marks on my collarbone and chest to mark where to treat each time. I’ll be having treatment on my collar bone and chest wall. I need to be able to lift my hand above my head while having my elbow to the side which I’m nowhere near being able to do yet but with the help of the exercises I should be able to by the time of the planning appointment.

Side effects are mainly fatigue – again – and soreness on the skin and I may have a kind of sunburn on the areas treated. There will probably be some minor damage to a small area of lung which shouldn’t be problematic. Fatigue will probably be the main problem as this treatment on top of chemo and surgery will be a bit harder than if I was going straight into radiotherapy.

I’ll have a CT scan for planning, but this is for positioning and not able to be used to diagnose any visible cell change, and they don’t carry out any additional scans to check for any new tumours, for example in the collar bone area, which seems surprising.

The doc slipped in that the cancer was widespread in the area removed in the mastectomy and was spreading around towards my back which was news to us.

Radiotherapy shouldn’t cause any permanent damage but can bring an added increase to the risk of lymphodema following my surgery. This can occur any time, even 10 years hence, so I have to do various every day things to try and avoid this. It also has a few possible long term side effects which I’m not thinking about at the moment!

Though not able to drive yet, I will be able to during radiotherapy, though they recommend not doing all the driving for appointments as it’s too tiring. And I can’t go swimming until after the end of treatment in case of skin irritation and infection – booooo. In the couple of weeks before surgery I went for a very gentle, minimal exertion swim a few times which has been really lovely, and will pick that up again in the new year.

I’ve put in a request for a 10am appointment, so I can drop Tilly at nursery, travel the hour to hospital, have treatment, have a bit of time in hand in case of delays (they seem to always run late) and then make it back in time to collect Tilly from nursery then home for lunch – phew! They try to accommodate appointment time requests but we’ll see if they can. I should get a list of all my appointments in a couple of weeks so I can start to plan. Be warned I’ll be calling on you locals for your taxiing abilities.

And we had a chat about the hormone treatment I’ll be starting soon and will have to take for the next FIVE years but I’ll save that fun for a future post.

I also popped in to see the breast care nurse to check that everything was healing ok as the seroma is extremely sore, but all seems ok. My lymph system has to learn how to re route now it’s lost the lymph nodes in my arm so best to leave it to do this without intervention. I’m back at hospital again on Monday – ugh – so I can get it drained then if it gets worse.

So a weird day, don’t really feel much more informed than we were before today. The day ended at a really lovely pumpkin party with  amazing friends and a very happy sugared up Pumpkin-Spider-Tilly whose sugar high crashed just at the point of bedtime which sent her off to sleep with a grin on her face – perfect. Times like that with her remind us that this cancer nonsense is just that, nonsense to get through while enjoying the good times our fabulous family has. Though it may not feel like it sometimes, we are very lucky.

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