Hi all
So sorry bit of a rant but…
I am 5 weeks post op today. I start radiotherapy next week but am anxious as still feel sore in breast and around wounds. I had planning appt last week and it all feels a bit fast!
I feel very unsupported by breast team - I thought they would be more in touch- it’s so hard during these times going alone to all appts and although my friends and family have been very supportive, I feel that they’ve all moved on since my op and the (wonderful) results of lymph nodes clear, and that they all expect me to be jumping for joy and just getting on with my life. But it’s still feel sad and not myself at all.
I feel that the breast nurses have not supported me - no phone calls or advice from them. I also feel quite upset (and a bit bitter) that any alternative therapies usually offered have been stopped, so no support groups or massage or anything you hear others talk about - even at the cancer centre when I went for planning appt there were no leaflets out, chairs turned towards the wall and water and drink machine not allowed to use (except by the staff!!) It just felt so cold and clinical at a time when I’ve never felt more in need of some nurturing. The staff do not seem to be very empathetic which really has shocked me.
I’m just feeling sorry for myself… I do really understand how easy I’m having it in the great scheme of things (and compared to some of you lovely brave ladies) but a I’m a bit fed up of hearing how ‘lucky’ I am from those that really don’t understand.
It seems that the best support comes from here so thank you for all the posts that I have read and empathised with (even though I may not have answered) It’s so nice to know that others are in the same boat and understand the emotional fallouts.
I’m not looking forward to 15 sessions radiotherapy but also scared of how isolated and alone I’m going to feel when they finish as THAT IS IT…what then???
Pxxxx
Hello, and sorry to hear how you’re feeling, but, so glad to hear your lymph nodes are clear. That’s fantastic news. I’m not going to say anything like concentrate on the positives, etc., but just to allow yourself to rant without apology. No apologies needed for expressing how you feel.
I’ve just had a recent shock of a new primary diagnosis and am not looking forward to going through things alone, and again. However, from what I can remember of before, some things, yes, were offered, but we didn’t have this wonderful forum. I’m sure there are more people who care for you than are capable of expressing it, or have the time to do so. That doesn’t stop you from feeling how you feel. There will be lots of ups and downs, and you are not alone. Perhaps having a chat with one of the breastcancernow nurses might help, take care, sharlea
Hello
I felt exactly the same as you. I had my surgery on 5 November last year and started my 15 sessions of radiotherapy on 12 January. I had to drive to a different hospital 17 miles away, the weather was awful and to go alone was frightening. I don’t have a partner and felt unable to ask a friend to either drive me or accompany me and then wait in the car in the freezing cold for however long the appointment took. To be fair most of my appointments were on time but I did find the whole experience totally exhausting. I was exhausted after my chemotherapy but the hospital was so local to me there was virtually no travelling time.
I am surprised you are having radiotherapy so soon after your surgery - have you been given a reason for this? I think it’s usually around 9 weeks post surgery. You have every right to feel a bit sorry for yourself. You have been and still are going through an enormous ordeal. I totally agree with everything you said. My breast care nurses weren’t much help either to be honest and I seemed to find out more by looking on websites. I assume you had a full mastectomy and you may be grieving the loss of that breast for a while. It took me a while to accept the loss, and I had big boobs, and the scar was another shock. It has been particularly difficult emotionally through lockdown. Everyone thinks we’re ‘better’ but no-one knows how we feel inside.
I did feel isolated after my radiotherapy - the only person who said anything was the Receptionist who wished me well for the future. I had no follow up call from the breast nurse team.
I’m unsure if we’re allowed to offer help on this forum but if we are and if you want to talk further please let me know - I really do understand.
Good luck.
Sending hugs and love xx
Hello PJWWOO,
im so sorry your breast cancer team have not kept you up to date , that’s awful so ok you have had your op, and are due to start radiotherapy 15 sessions…it will last 15 mins each session, ok you will go to the Mould room this is where they make marks on you and a few lil tattoos so it is easy for the radiographer to see where they are going, if you have any underlying health conditions let them know tell them this as they can use some kind of giant bean bag to help you get through your RAD.
wow well this is just the start of your treatment, you usually stay with the same team who are giving you treatment, ok buy yourself some AVEENO Cream and start applying a thin coat on to where you will be having treatment , I also use the shower cream, the RAD team will give you their cream also if you have an itch tell them there is also cream for that as well ,ok it will feel as some days go fast and others drag, do let them rush you into getting ready as they will give you a top to wear every time you have your RAD you will wear this top, I do hope that the staff are more nice to you.
there is also usually a McMillan Cancer room where you can get leaflets etc, so this is your new team now, make sure you chat to other people as you are not alone in the RAD waiting room. After you have had a few treatments you will feel sore and this is the effect of the RAD, just use Luke warm water when bathing as it is kind to your skin, you will also notice it has started to change colour this is normal, so eventually as you get to the end of treatment you will be given, more cream for your skin this is your finale day you Ring That Bell, yes it is very emotional and hard people clap for you as your treatment comes to an end while others are still going through theirs wether be RAD / CHEMO or BOTH, it dose have a knock on effect on you, so now your on your own again don’t forget your RAD Nurse will be at the end of a phone line for you, he/she will phone you a day or just after to chat with you see how your coping etc, they are there for you the first 2 weeks your change in skin is normal just keep it clean and keep putting the cream on, I also found it best to wear a cotton top oversized a bit and no BRA it dose help a lot let the fresh cooling air keep you feeling nice, I also found it easier to wear a loose cotton top in bed when I sleep it is so comfy and a lot more comfortable, so I guess I have mentioned most of it to you but we are all here to listen and guide also help if we can, we are here for each other so you take great care my lovely and let us know how it goes make a Diary I did from start to the end and it amazing what we went through we are all survivors .
Wendy.S xxxx
Have also felt very unsupported since the surgery - more post-op problems than anticipated. I am now over two months post-op and finally can believe it is just slowly resolving, but there was pressure to get on with radiotherapy and no proper explanation of the side effects compared to risk of recurrence.
The need to recover emotionally and psychologically does not seem to enter into the equation.
I sympathise very much with what you have said and hope it goes well for you.