secondary endometrial cancer and solitary lockdown

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about the challenges you are facing. These are unprecedented times making the cancer journey just that more challenging.

Yes, talking with people who are on the same type of journey can help a lot so can I direct you to our very supportive Womb (uterus) cancer group.

Posting in this group will open up your concerns to a wider group of people who know exactly what you are going through at the moment.

Follow the link I've created, join the group, then hit ‘start a discussion’ and you are ready to go.

You could then copy and paste the information from this first post into your new discussion or you can also join in with existing ‘discussions’ by clicking on 'reply'.

This Community is organised into various support groups some are Cancer specific  but we also have our general Cancer experience groups.

When you feel up to it, it would be useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself and if you're not sure what to write you can take a look at mine by clicking on my username but my journey was rather complicated.

All the very best.

Hi

Nice to meet you - although I wish the circumstances were different. I’m also living with secondary endometrial cancer. I have the high grade serous type. How about you? I’m also in a quite staggering amount of pain and feel I might rattle when I walk, or would if I could walk fast enough. It’s a slow stagger from kitchen to living room and back right now.

I absolutely agree with you about the importance of getting together with friends and family. I live with my 16 year old daughter so I am not completely alone. 

I find that in these difficult times the community here is becoming even more important. I’m an active member of the group living with incurable cancer. There are a few others there with secondary womb cancer but mostly what we have in common is a desire to live with this cancer, not die from it. There are lots of ongoing conversations about gardening and other off cancer topics. Yes, there are some sad conversations, but we do also have a laugh at times. 

If that sounds like what you’re after then do join. You’d be made to feel most welcome. 

https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/discussions

Hope to see you around 

xx

Hi daloni

Thank you for replying to my posting. It does very much sound like me. you have struck a chord about 'staggering from the kitchen to the living room'. I am so living with this cancer which was not as much a problem before the lockdown as now. I had friends and family helping me but now I have to do everything for myself. I also take so many pills that I feel quite sick at times. I wonder if there is any more treatment available which could help me take less pills. I would have discussed this with my oncologist but don't know when I will be able to see him again. I have requested a telephone appt. but so far not heard anything. It is good to know that although unfortunate there are other people living with this condition.

My mantra is to be happy today and tomorrow is another day.

Hi daloni

Thank you for replying to my posting. It does very much sound like me. you have struck a chord about 'staggering from the kitchen to the living room'. I am so living with this cancer which was not as much a problem before the lockdown as now. I had friends and family helping me but now I have to do everything for myself. I also take so many pills that I feel quite sick at times. I wonder if there is any more treatment available which could help me take less pills. I would have discussed this with my oncologist but don't know when I will be able to see him again. I have requested a telephone appt. but so far not heard anything. It is good to know that although unfortunate there are other people living with this condition.

My mantra is to be happy today and tomorrow is another day.

hello. I am new forgive me if my comment is unwelcome.

I just wanted to say you are amazing and your doing great! I am very alone as i diagnosed as we slipped into lockdown.the pain is a lot to deal with on a daily basis but I find it is the emotional unrest and pain that gets to me the most. I am usually a very social able person myself and have spent my life trying to help others no mater how big or small the need is. I am lucky enough to no myself and my body and so notices the effects of the cancer quite early. 

I suffer quite regularly with the back pain associated with the condition and find that gentle yoga can help a little...i don't no if it will be the same with you but I definitely recommend it. I only do a 16minute a day routine specifically designed for back pain. 

I hope as we come out of isolation you can find the support you need to get you through this terrible diagnosis. 

Dear Penjamin

Every thing you say, being alone and coping with the pain, is exactly how I felt when we went into lock down. Now after 10 -12 weeks ? I am in a much better place. A friend told me about Pain Patch relief and after speaking to my GP he prescribed BuTrans 20 patches. I wear one patch for a week then change it. My constant pain has gone and if I need to I can top it up with liquid oromorph. These patches provide a steady feed of morphine so eliminating all the pills I was constantly swallowing. I also hope that as we come out of lockdown I can resume my once sociable life while living under constant threat.

Hi Daloni

Can you or anyone tell me more about the back pain connection. I was diagnosed in 2016 with complex atypical hyperplasia... Prior to this my back went and I couldn't walk..however I did not know it could be a symptom. I suffer from back pain all the time and it feels like its deep in my legs too?

I am awaiting my hysterectomy.

Thanks all xxx