Hi Ladies
I was Dx in May. Had WLE and sentinal node biopsy in June. E-CMF chemo since end of June that finishes in two weeks - Yipee! Then I am having bilateral mastectomy in January.
Feel like I’m being a winger but so many people keep saying to me:
“Just think, this time in two months it will all be over”
NO IT WON’T! - I then have to make decisions around ovary removal due to my ‘C’ being genetic and I personally don’t think that it will ever be over. How do you get over something like this? I keep saying that the physical journey will hopefully be over but the emotional one will go on…
Fortunately my partner is a practitioner in mental health and he understands that it won’t be over but people are making me mad by their comments. I suppose they think they are comforting me but I wanna SCREEEEEEAM!
Thanks for reading! I feel sooooo much better now!
First of all you are definitely not a whinger - far from it.
I was dx on Nov 1st - had mastectomy and full node clearance on 15th Nov. People seem to think that because I have now had the surgery, and I’m up and about and can manage to walk to the shops that that’s it.
Even those that know I have started (on 28 Nov) my treatment plan of 4 x FEC, 16 rads and 4 x Tax seem to think that I should be happy that ‘they’ve got it’. People just don’t understand a) the process involved or b) the emotional aspects involved.
I have even had people tell me how lucky I am that I am off work in the run up to xmas and how convenient it is that I’ll be able to get all my shopping/preparations done - HELLLOOOOOOOOO - d’ya think they’d like to swap places??? Guess not.
Sorry I haven’t been a great lot of comfort - but at least you know you aren’t the only sceaming lol!
Think I will join you 2 in the screaming club - absolutely no-one knows what we are going thro unless they have b;een through it themselves or a loved one very close.
I was dx July - have had 6 lots of AC chemo, have surgery for mastectomy booked for next Monday then maybe rads.
I have been back at work part time (non clinical) - I am a nurse . one of the anaesthetists today was talking to me and when I said I had to get mast and no wle - he said “oh you’ll be fine” - aaaaaaarrrrrrrrrrrrrhhhhhhhhhhhhhhh - I just said - thats really easy for a man to say!!! Think he realised what he said after he had said it! At the mo - I am crying myself to sleep every night at the thought of losing a breast.
Like you Carly - I know I will eventually accept the physical side (I hope) , but I KNOW the mental side is going to go on for much longer - in fact was speaking to bc nurse today and said I would like referred to specialist counsellors after I recover from surgery so that I can hopefully move on from this. I dont want to live my life with this huge shadow hanging overy me and with anger.
Hi Carly,
Just wanted to send some much-deserved sympathy. Like you I’ve just finished chemo that started in ApriI, and I know that people are just desperate to make it all right for us and so want to find something positive to say, and latch on to the end of treatment as an ordeal over and done with. But it doesn’t make it any easier cos i understand their feelings. I want them to understand mine!!, where I am at with it, and they just don’t want to know, or can’t handle it. It is a pretty horrible reality and we’re only staring it hard in the face because we have no choice.
You have done really well to get this far, and still have an enormous hurdle to get over (mastectomy) before all the rest of it, like you say.
We need to think of a really good rebuff comment, that will put them in their place, so they either zip up and don’t say things like that again, or start being a bit more undersatanding.
Big hugs and strength for the rest of chemo,
Jacquie x
I found this article by Dr Peter Harvey, who is a Consultant Clinical Psychologist at Leeds teaching hospital very helpful.
The article is called “After The Treatment Finishes - Then What”.
In the last visit to my onc, she warned me that after the end of treatment, many people do go through a low time, factoring in all the changes in their lives and thinking about the long term more. She has insisted that it is important to take the time going back to work, she’ll put me on a 50% schedule for some time… and I think that it is a good idea to “try life on for fit” before jumping in the puddle.
I absolutely agree. I am at the beginning of my treatment, seeing onc tomorow, starting chemo probably next week, however, even at this early stage, I am aware of the long term affects. I do think that hospitals should have a more holistic approach to BC. It seems, in most cases, that or little or no emotional support is available during and after surgical/medical treament and when it ends. Thank goodness for this site, it must save the NHS a fortune!! I do wonder (and worry) about others with BC that don’t have access to this site.
I’m with you totally on this. My FEC finished 3 weeks ago & am looking mastecomy in the eye. It’s NEVER over.
People have said to me “this time next year you’ll look back & laugh” - yeah, right, coz it’s been such a laff this cancer treatment. What planet are they on???
I’ve got two young 'uns (2 & 5 yrs) and I want to see them grow up - I fear everyday that I won’t see that dream. That won’t go away just because my treatment finishes. Plus I want recon * reduction on good side so I’ve still got a way to go yet.
I think we have to remember that it’s only us who know what it’s really like - that’s why this website is so brilliant. We can come on here and know that everyone understands our fears and problems.
When I get fed up with my friends not understanding I have to remind myself that I was just like them until this year. I have a friend now seven years on from dx. At the time I had no idea what she was going through, and didn’t understand her fears of recurrence as the media is always full of how curable this disease is now. I didn’t understand how terrifying it is to imagine that you will be in the 20% or so who won’t make it.
Dyzee,
I agree wholeheartedly about your holistic comments. At hospital I feel like I am in a sausage machine of cancer treatments - put me in at one end, squeeze me through the system and just push me out at the other, without any thought to how I am coping either emotionally or with the physical side effects of the treatment they are giving me. I think they feel that as long as we are given the prescribed treatment then they have done their job.
Have to agree with you entirely RoadRunner - I too have been in the position, prior to my own dx, of ‘supporting’ good friends through BC - I am now only too painfuly aware of how crass and inadequate I was at times. I get angry at remarks made by people - then have to stop and remind myself that in the past I have been just as guilty of saying exactly the same thing.
I have to say, following my initial diagnosis, I did feel like an ‘individual’ not just a part of the process. My BCN and consultant made me feel like I was the only person they were dealing with…however, now I am officially on the ‘treadmill’ cycle of treatment, I do feel that this has changed. I can almost sense a feeling of exasperation in my BCN’s voice if I ring with yet another query. I know they have a heavy workload, and we have off days but I hate the way it seems to have changed?
Or maybe it’s just me - maybe this is MY off day lol
Yes Roadrunner, I am sure that hundreds of us recognise that feeling.
I’m trying very hard to be positive and not become cynical - but, statistic, targets etc springs to mind!!!
I gave it to our HR manager, she found it very useful. I also printed it out and gave it to my hubby and daughter, to help them understand the emotional and psychological side of things.
I am posting rather than emailing you as others might like to know this. There is a Holistic Centre at James Cook hospital. The centre is charity run and, as a cancer patient, you will be allowed to have two types of therapy free of charge if you just go along and introduce yourself. The staff are brilliant and there is a very calm friendly atmosphere. I only found out about the centre when Mark, one of the radiographers giving me rads, told me. The run a headscarf fitting service too. The therapies they offer are, reflexology, acupuncture ( v popular and done into ear. Helps with hot flushes ), reiki, massage, homeopathy etc. They have a very small car park but everyone parks behind one another then, if you are having treatment, you just leave your keys and they move your car if they need to. The recently had to shut on Fridays due to staff problems.
I don’t know why I had to wait until I was having rads until I found out about this but I didn’t have chemo. You might be told of it tomorrow when you see the onc. Don’t be surprised if you have a long wait to see him by the way. I had to wait about 2 hours. Good luck for tomorrow. Let me know how you get on.
Thanks Ladies
Enjoyed reading your comments. I suppose one good thing to come out of all this is that hopefully we will be more understanding and empathetic to our family and friends if (God forbid) they have to deal with anything we have never been through.
Dyzee - thanks for the link to the article. Just about to have a read.
Feel like screaming again today but for different reasons - toothache and period pain! Oh Joy!
Can truly sympathise Carly. Pain in jaw and ear. Jaw too stiff to open mouth but I have found that if I flatten everything with a rolling pin, I can slide it in sideways and suck!!
Debbie
xxx
Oh and period due on Fri. Hope your toothache goes soon. Nothing worse.
Cadbury Wispas are back though - I love them - they were selling them in Woolworths! I’m such a chocaholic I couldn’t resist replying to your comment Carly.
