Just diagnosed

FormerMember over 5 years ago

3 replies
28 subscribers
1342 views

Hello everyone

Just over 2 weeks ago I was diagnosed with cancer of the oesophagus. I'm 46.

To say I'm shocked is an understatement and obviously my world has just been turned upside down. I'm told it is stage 2 and they are running further tests to see if it has spread anywhere else before they decide on a treatment plan. I've had CT and PET scans (both clear) and am having a staging laparoscopy next week, which is the final test before any treatment starts. If they can't see anything anywhere else after the lap, it will be chemo then surgery.

My situation is affected also by the fact that I am immune deficient (it's a lifelong condition which is being managed) so I'm not in the best position to be undergoing chemo or to be having major surgery but obviously whatever needs to be done needs to be done.

I'm coping OK ish at the moment, my husband, family and work are being amazing. I do have my 'dark' moments though which catch me unawares sometimes. This is frustrating as when the demons appear there is absolutely nothing I can do to shake them off no matter how much I try. Pesky little things.

I feel very let down by my Macmillan nurses though. There are 2 at my hospital and they are just impossible to get hold of. If you call them and leave a message, they rarely ring you back. I did manage to speak with one of them a couple of days ago as I had some questions and she said that my case was being discussed that day in a management meeting and she asked me if I would like a call back after the meeting with an update. I said yes please but I didn't get any call back. I called twice yesterday and left messages saying that I was worried that I hadn't heard back, yet still they didn't call back. They don't work Wednesdays so I won't get to speak with them today either. I am very upset that they have just left me hanging like this and didn't call me back like they said they would. And to ignore a message from someone who is clearly anxious and worried? I'm sorry to say that Macmillan have actually made my situation worse rather than helped, they have only added to the worry and upset.

I feel very alone and let down.

Debbie x

FormerMember over 5 years ago

Hello Debbie () I’m really sorry to hear of your diagnosis and the rough time your having at the moment, and wanted to welcome you to the online community where lots of us affected by cancer either as a patient, carers, friend or family gather to support each other. It’s a place of support in many ways, you can use it to get your anxiousness expressed and out of your head, or to seek other people’s experience or practical tips and have lots of Macmillan information close at hand.

I read through how up set you feel, that the nurses at your hospital after the MDT hadn’t got back to you, and how alone and let down you feel. I’m only sorry one of us volunteers didn’t respond yesterday either, so having just read your post I’m sitting down seeing if I can help. My first thought was that I have a different cancer to yourself and so although I know very well that down feeling after a diagnosis and how it does get better when you have a treatment plan in place, I can’t help with what that treatment plan might be but I can help with a few tips how to get the best out of the community and get to talk to the people who have the experience that you might be looking for. But I did want to say that when I read “I’m sorry to say that Macmillan have actually made my situation worse rather than helped” I was disappointed that you felt that way about Macmillan, as the nurses would most likely be employed by the NHS hospital but the hospital has had funding from Macmillan for their training and I know from how long I have to wait for scan results how much pressure the NHS is under at the moment. I hope they have been able to get back to you now with some information of what was discussed, or a time when they think they can talk to you if they are waiting further information. I’m also thinking the 0808 808 0000 Macmillan support line number might help you talk things through. Here’s a link about Macmillan nurses so you can understand their role a bit more.

https://www.macmillan.org.uk/information-and-support/coping/getting-support/macmillan-nurses.html#46702

Anyway on to helping you on the site as you are new to this. The new to site is where we can direct to to the best groups to join, and so I’m thinking the gullet (oesophagus) cancer group will be of support to you and I’m putting the link for you to click on below.

https://community.macmillan.org.uk/cancer_types/gullet-oesophagus-cancer/discussions

I also recommend completing your profile so that you don’t have to repeat yourself to much and so that others can bear what’s in your profile in mind when they reply to you. You just click on your user name and find the edit button to do that, click on mine to read if that helps, although mines really long I should edit it, oh and the help button has a section on completing a profile. The Groups button in the section just below the name online community has all the cancer types and some cancer experiences groups as well, that you may want to browse through.

I do so hope things are feeling a bit better for you today, when I’ve had to wait for info I’ve tried to keep myself occupied so as not to think about things, other times I want to do as much research as possible so the Macmillan information and support pages have been really useful to me and I hope they will be for you. I’ve put in a couple of links I thought you might find useful but please feel free to ignore them.

https://www.macmillan.org.uk/information-and-support/oesophageal-gullet-cancer

https://www.macmillan.org.uk/information-and-support/coping/your-emotions

I hope you will join your cancer group and talk to the members over there by replying to someone’s discussion or starting your own, and if you need any more help finding your way around the site in these early days just press reply and someone will be along.

FormerMember over 5 years ago in reply to FormerMember

Thank you for your response KT.

One of the nurses did get back to me the next day so I've had a chat with her and feel a little better now. I do understand the pressures they are probably under, they did say there has been a huge influx of people recently who have been diagnosed with the same cancer as me so I imagine they are rushed off their feet. I was perhaps just being a little needy at the time.

I will look into joining my cancer group soon, I'm not quite ready for it just yet. I don't know why but I'd rather wait until I've had all my tests and know exactly what's what before I delve into things any further. I think I'm worried I might be told something I'm not ready to hear yet!

Thanks very much again for your response, it really is very much appreciated and I'm sure I'll be lurking round the community more in the future!

Debbie x

FormerMember over 5 years ago in reply to FormerMember

You are very welcome, I was also a reader rather than a poster for quite some time.

My tip would be to join the group as it makes it quicker to find the group you want when you are ready to read or post things in there, then just set the notifications to none until you want to be notified of new posts more frequently. Just join in when you feel ready.