Just fed up.

Hiya Scared Mom, 

You poor soul feeling as you are, unfortunately I get it, and I can say it does ease in time. My diagnosis took me to a very dark place also however strangely enough once I had a treatment plan in place my mind managed to focus on that which made the horrible feeling less often. 

Have you been given a treatment plan as yet? With regards to the loo I can’t say I had the same symptoms with not being able to go however I was going all the time!

I have a son, Charlie. He is just turned 12. Some days I could hardly look at him as I felt so guilty I was putting him through it all, but my god, he was, and still is, the strongest out of us all. Kids are resilient, much more that they get credit for. 

You can do whatever is in front of you, and you will do it with strength and grit, cause that’s what we do as mums. 

have you got a Mcmillian nurse you can speak with? 

Jen 

xxx

Hello scared mom and welcome to the group.

I’m so sorry to see how difficult things are for you at the moment, and how this is making you feel. I’ve had issues trying to reply to posts today so hope this one works!

You haven’t said what stage in the process you’re at but it looks like you are waiting for your treatment to start? This is a tough time, but if you are waiting for it to start, you will start to feel better once it has. You can vent in the group at any time and know there will be others who understand and know what you’re going through. Mentally the whole thing can be as difficult as the physical side of a diagnosis. It certainly was for me.

You mentioned pain. Does your doctor know and have they prescribed anything to help? Constant pain wears you down and is very debilitating and you shouldn’t have to deal with that. It’s really something that needs to be managed, so speak up if you have not been prescribed any pain relief or ask for it to be changed/increased to help you get through. I went up in strength on different types of painkiller as things progressed for me and I admitted to my doctor it was becoming difficult to manage. 

You can do this, you can get through this, but you’re just having a hard time right now. It will not always be like this. We have a lovely group of very supportive ladies here who will do their very best to help and support you. xxx

Hi Scared mom...  I'm so sorry about your diagnosis.  I also am Stage 3c and I have been through (still am) the rollercoaster of emotion and uncertainty that we all go through with this.  I am trying, and not always successfully, to keep positive.  This is curable.  I agree that your Macmillan nurse would probably be a good person to speak to.  I don't think there is anyone here who hasn't visited these dark places many times but I believe that, at least for me, it is bad for my stress levels and my health.  Everything can get a little overwhelming and I have to pull myself up and try to be strong and positive.  And I know that's not an easy ask!  I really hope you start and feel better as you get a clearer picture of the treatment plan.  I also like to try and take control of the little things that I can such as a healthier diet and exercise.  I'm probably not helping but I would like you to know that you're not alone on this journey and we are all there with you.  Sending healing hugs xxx

Thank you and yeah just waiting for it to start. I had an appointment Monday and told it could start anytime in the next 2 weeks. My gp adjusted my pain meds but keep trying to wean me off because 'I'm just going to become addicted to them'. For 6 years I've been screaming for help and to be listened to but no one ever does. But it's OK to be in pain because at least I'm not another addicted person.

Hiya. I know what you mean. I feel like I'm failing my 3 kids and may have to rearrange their hospital appointments when I'm in hospital.  I haven't got a macmillian nurse yet or if I have I don't remember.  I get alot of brain fog and need alarms for my medication and write it all down cos I can't remember taking or don't take because I forgot if I've taken it of not

The thing that's worrying me is before all this I had bad mental health anyway, I have had depression for well over 20 years aswell as anxiety and agoraphobia. I just feel this is pushing me so far back in getting better 

This is absolutely outrageous....seriously. You have to endure pain because that’s better than addiction? I would want to see a different doctor I think. If you have pain that needs to be managed then you need medication to cope. You won’t become addicted if you need them to function. My doctor never suggested this, and I was on various things for a long time. xx

Hi scared mom, 

it really is worth having a Mcmillian nurse, these people are amazing in my opinion. 

have you any port of contact with the oncology team? If so maybe you could try contacting them and they can advise you if you have an allocated nurse or how to be appointed one. They really do help on a whole manner of concerns and their knowledge is outstanding (certainly in my own personal case) 

do you have a drop in cancer centre like Maggie’s close by? The one here offers great sound advise, various classes including well-being and, if you would find it beneficial, professional counselling, their tea and biscuits aren’t too bad too! 

Please don’t feel alone, and don’t suffer in pain. There are so many medications out there, I’m sure your doctor would be able to find something suitable for you if pressed. 

Take care and I’m sending lots of positive vibes 

Jen 

xxx

Hi Jen

I’ve often wondered about the whole Macmillan nurse thing. I was allocated a CNS (cancer nurse specialist) on diagnosis but no-one ever mentioned Macmillan. Are they two different things do you know? I was able to phone my nurse with any questions, and had more than one during everything when people retired or my team changed. 

I thought everyone was allocated a nurse at diagnosis, and I would agree that they are extremely helpful in navigating processes and helping you. Definitely worth phoning up to check. I wish we had a Maggie’s centre close by-I’ve heard they are a fantastic resource. xxx

Hi Sarah, 

in all honesty I don’t know. My experience was with Mcmillian and a friend that I met in hospital that had lung cancer has a specialist nurse however she did exactly the same for her as my Mcmillian nurse did for me.

I met my nurse at diagnosis and she was there for all appointments with the oncologist and came to visit me when I was getting brachytherapy. She was available to call anytime  and was just absolutely lovely. 

The Maggie’s centre was a great place to go and be able to off load and get safe, sound advise. I attended one of their councillors and found it an amazing benefit for myself. She was specifically trained for dealing with people living with cancer and had a good amount of knowledge as well. 

Jen 

xxx