To MarmiteFan59

Hi Walkinglady, I understand completely and I have said whenever I have posted that I’m not saying that others should refuse the injections, just that it’s a choice. Yes the risk of a deep vein thrombosis is increased for those with cancer and those who are obese and those who are obese (I am both). But the risk is still relatively low and I was prepared to put the effort and work in and take the risk. I also have no underlying health issues other than hypothyroidism and my blood pressure is typically normal despite my weight and my heart rate healthy, For me my mental health was the main priority and I just knew that for me it was the right decision. I had bruised a lot from the one injection I did have. I have anxiety over needles anyway (relating to a bad experience with a blood test), knew I could not do the injections myself, and also would not want my husband doing them. So I’d have had the faff of having to go to my surgery Monday to Friday and having the district nurse at weekends and knew that would increase my anxiety. Plus mentally I’d had enough - the buoyant positive messages on here are real, but a positive mindset certainly isn’t a permanent fixture for me, it takes work! 

Regarding the digestion side of things, I’m aware of course that some women have problems that take longer to be resolved. However, i feel it’s important to post positive experiences too, for the sake of balance. When I was first diagnosed with cancer in November, and started talking to my CNS team fairly regularly, I told one of the nurses that I’d joined the Macmillan online forum. Her response was that that was okay, but that I needed to bear in mind that most people that post on cancer forums post because they’ve had negative experiences, and that her concern for me was that I didn’t get an unnecessarily negative view of things and that I should bear in mind that many women have better experiences than it may appear from what’s typically posted on forums. So I decided to post any positive experiences I had on here as well, to help others get a more balanced picture too which might help their mindset. 

Hi MarmiteFan59,  I've been around on this forum for quite a while.  Over that time my motives for reading or posting have changed. I didn't visit till after surgery but now I realize that some of the info here would have prepared me better for the experience because I got so little useful advice from my CNS.  Once here I just lurked but realised that my own emotional turmoil  was quite normal!  Reading about other people's experiences proved quite therapeutic and I  did post in spite of the fact that I did not find it easy to talk face to face  to anyone about my cancer.  I joined a conversation  with others who were having RT at the same time.  Reading about those who were doing less well saddened me but filled me with admiration and encouraged me to be more positive about my own situation. Although I am now "signed off"  I still keep an eye on the forum and sometimes post.   

This is a bit of a rambling post but like you, I feel it  is good to hear positive experiences and perhaps the fact that I am (at 84)  still around 7 years after diagnosis may be a help to others.. 

Hallo Anne, thank you for your lovely reply. And just to say that reading your story in particular gave me a much needed boost when I first read it, and I also read it out to my husband. Sometimes I feel like I’ve got this, and sometimes I feel like I’m holding on by my fingertips. I have an added dynamic in that there may be a genetic component as they found something unexpected post op. But thank you again, I’m glad you’re here and really appreciate you popping by to post.

Hi Anne, thank you for taking the time to write your post as I have benefited from reading it.  I wish I had known about these Macmillan forums before my surgery and I only found them by accident when looking for something online after my surgery and am so pleased I did.  

Even though I met quite a few Macmillan nurses I wish they had told me about these forums because the day after my surgery when the surgeon came to my bed and told me I had cancer and it was likely to be stage 3c ovarian cancer I found that very difficult emotionally.  When the Macmillan nurse was by my bed a couple of days later I felt better when she was giving me positive news about a woman she knows who was first diagnosed 18 years ago and I got so much comfort from hearing that news.  As I type this now I can feel myself filling up thinking back to the place where I was just over three months ago.  

The support this forum gives is truly wonderful and I know lovely Barb MrsBJH encourages us all to fill in our profile details and I wish more women did and then subsequently updated it too.  When new people come here seeking advice or support this enables other women to give relevant advice and then perhaps people who were diagnosed many years ago could also provide updates on their profile as I know that is what I like to read.  

Thank you Anne for your post as it really resonated with me xx  

(Class of 2021)  

Hi MarmiteFan59  I don't know if I am the only person to do it but I often build  a mental picture of other contributors.  Having thought of you as one tough lady who had everything under control, your comments today  have reminded me not to take things at face value!  And by the way i hope you get some resolution to the genetic issue and don't have to wait too long..  

oldady

Hi Anne, As always lovely to read your posts

I myself hardly talked to any friends or family about my cancer as they didn't know how to handle it, either too gushing or evaded the subject. Therefore I found the support of ladies whom I'll never probably meet the most special thing ever. If you voiced something you thought was daft to mention someone would come right back and agree, restored my sanity to some extent.. The fact you went through all this upheaval when you were mid 70's shows what a star you are. At a juvenile 68 I'll take my hat/wig off to you LOL.

Big hugs, Barb xx

Sarah16

Well said Sarah, c'mon ladies who haven't updated your profiles/bios, get writing LOL!

BTW whenever I have my chemo I wear my Macmillan Volunteers badge and very few people ask me about the forum, they seem to want to be private when having treatment!

Hugs, Barb xx

Barb

I can understand some women wanting to be private when they are having their treatment.  

Your post has led me to ask how would they know to ask you about this forum if your badge just says 'Macmillan Volunteer'? 

Would it be helpful to have on your badge, 'Have you joined the Macmillan forum for your treatment?' or something like that?  Or even have leaflets/flyers printed to take with you to the hospital.  Unless your badge referred to these forums the people at the hospital wouldn't know about them if it just said 'Macmillan Volunteer'.    

In the hospital where I go there is an area where you can pick up the Macmillan booklets and I do think there should be leaflets there mentioning these forums and also in the treatment areas (if possible) too xx   

Hi Sarah16. No my badge is just a shiny M - doesn't say I'm a Macmillan volunteer. I do hand out Macmillam cards (the credit card sized one which give the helpline & support no.) The Macmillan nurses come and talk to me if they're around but they're normally busy based out "front of house" at the hospital. I talk to ladies if they want to chat and say how much it's helped me. I suspect I've seen people having joined on other forums - especially men in the prostate cancer group - they're notorious about keeping schtum..

Hugs, Barb x

Hi again, I think that on the whole my posts have been quite positive as well.  Your comment about standing up straight and being active to get rid of wind obviously touched a raw nerve in me It is good that if nothing else, my post encouraged some details from Barb about her volunteer role.   XX