11-09-2018 06:18 PM
11-09-2018 05:50 PM
Thanks everyone for you messages, a great support as always
My clinic doesn't have the fancy goggles to help with the breathing, and I wasn't given advice (verbal or written) about how to breathe, only that I need to be able to hold it for 30 seconds. I will definitely feed this back to the department when I go on thursday to try again with the scan, as it really has been a source of stress that could have been easily avoided. Same goes for feeling exposed and male staff. I haven't minded taking my top off in treatment until this point, but it did somehow feel like a step too far, maybe because the room felt cold, I was exposed for quite a long time, and because the atmosphere in there was much more clinical than in the breast care clinic.
JWD - if your tumour was in your right breast you might not need to do the breath hold technique, but ask your team if you're at all worried
Funnily enough they did ask me if I was a yogi (I dabble a bit), but I suspect my belly breathing is more likely because I'm a freak, haha.
11-09-2018 12:35 PM
Yes, even what you think might be the "easy" bits are filled with challenges. However, the challenges you seemed to have faced at your Planning Meeting seem to have been due to medical staff "emotional intelligence" failures. I always say how grateful I am for the medical treatments available to me but not always enamoured by the way they are delivered.
Based on your experiences, the staff you saw seem to need a refresher course to remind them that they are dealing with people and emotions and not just bodies.
How absolutely ridiculous that you could be left feeling useless about breathing. By the way, in the long run, belly breathing is a good technique for life - as any yoga lover will tell you. Also good for people with breathing difficulties apparently.
Just like people can learn to belly breathe, I am sure you can learn to chest breathe. Did they not give you any specific guidance? If not, then they should have done. So get back in touch with whoever is co-ordinating your treatment and let them know your situation and that you need help.
You are so young, do everything you can to protect your heart. If you are having radio, then you should be under a Clinical Oncologist and you can arrange to meet with them if necessary to discuss. Some people with breathing problems can't hold their breath for the time required yet they can try other methods to protect the heart when radiotherapy is required on the left side.
On the other matter of "feeling" exposed. I do not give a flying f when people say things like "they've seen it all before", "they've seen worse", "they are use to being clinical" and all that. I think the point is being missed. ..It is not about bleeding them!!
These highly trained professionals are supposed to uphold patient's dignity and respect. They failed to do that in your case (and no doubt other people's). By introducing another colleague of whatever gender without warning or explanation or protecting your modesty if it was not necessary to be exposed, shows neither respect nor dignity to you.
Not everyone can feel able to say at the time. However, you can make complaint/give feedback with constructive suggestion on how the Service could be improved. This could also help others.
By the way at my Planning Meeting, I was lying "exposed", when I looked up and noticed 2 men through the glass screen. I recognised one as the Clinical Oncologist I had met before. I checked at the time, and found out that they had no specific need or purpose to be there regarding my treatment. I also fed back my experience to the relevant Trust and also described it as seeming rather "pervy". Like I said, it's about us not about them.
I hope you manage to resolve the breathing issue and wish you all the very best with your treatment.
Chick 🐣 X
11-09-2018 07:50 AM
Sorry, Caroline, about your very unpleasant experience.
I'm not surprised you found it difficult having a man coming in on your session unannounced, but as others have said I think radiotherapists tend to take the whole process in a very clinical way. There are so many male surgeons and oncologists examing us that it doesn't occur to them a male radiographer might be a step too far, especially if we aren't warned in advance. I'd have a word with the lead radiographer on your next visit and ask if you could be warned in advance in future.
Different people manage the breathing in different ways. I find it easier to keep my mouth closed, as otherwise I'm at risk of coughing. It helps me to hold my stomach in, then think of my chest and imagine it doing the work. Are you given goggles displaying coloured bars to help you manage your breathing? They make it much easier but not all radiology departments use them.
In the radiology dept of my local cancer hospital they have an advice/support section with very experienced radiographers on duty to help you with problems. You could phone up your own department and ask if there is someone you could go in to talk the problems through wtih. Also, you should have been assigned a breat care nurse and she might be able to assist you to get a rather more understanding approach.
10-09-2018 10:25 PM
10-09-2018 03:29 PM
10-09-2018 02:52 PM
10-09-2018 02:47 PM
I went in today for what should have been my radiotherapy planning CT, but they wouldn't do it as I'm apparently a belly-breather rather than a chest-breather. The information I was given didn't include any instructions on how to practise this, and although it says that DIBH is optional the radiographer said I really have to try to make it work as I'm too young to risk the radiation affecting my heart. I'm 31, fit, and otherwise healthy, and don't suffer from any breathing problems.
I was already getting a bit stressed by the fact I seemed to be useless at breathing, then to make things worse, the female staff told me they were going to talk to a colleague in the other room to get advice, but they came back again with a man, without giving me any warning. I felt so exposed and shocked lying there topless while a man had his face close to my chest to inspect my breathing. I wouldn't have minded so much if they'd asked me or at least prepared me first!
After that I was struggling not to cry, so when they told me I'd have to go back in another few days and try again I got really upset. I have no confidence that I'll be able to do it under the pressure of treatment, but now I'm also worried about my heart if I don't do it using DIBH...
I thought this was meant to be the "easy" bit??