I am not very computer or social media savvy following many years of dealing with psychological trauma and unable to concentrate and exhausted - I posted earlier in the "uncurable cancer " group but am unsure whether that is ok and if its is ok to post here, but will try. I am 74 and was diagnosed in January 2023 with stage 4 cervical cancer which had also spread to the pelvic lymph nodes, told I had a year to live without going through a course of "very aggressive and radical treatment". I had chemotherapy, radiotherapy and brachytherapy and was told to my amazement in December 2023 that it had completely cleared.
Bowel and gastric side effects plus extreme fatigue worsened over the next few months but for the last two months I have felt increasingly better, mentally and physically. Then a couple of months ago a scan showed the pelvic lymph node was "showing slightly" that it may be an infection or nothing and could just go away - but further scans revealed it was cancer. The consultant said I would be treated with either radiotherapy or surgery once he had discussed it with the MDT. Two days ago I was told the outcome - I cannot have either surgery or radiotherapy - surgery would be too dangerous as it would mean cutting into scar tissue caused by radiotherapy effects, and the doses of radiotherapy I was given last year were so high that I cannot have any more. The swollen lymph node could grow and spread which will be found out by another MRI scan and the consultant will see me in ten weeks to tell me the next steps - which, if it has grown or spread will mean more chemo plus immunotherapy - "But it will not be curative". I know the effects of chemotherapy and wonder if another course 18 months on would be as awful - plus I know nothing about immunotherapy or what side effects to expect.
Suddenly - and it has taken two days to begin to hit me - I realise I have terminal cancer and i am full of questions - is this now the best I will ever feel/how long can I expect to live/am I going to deteriorate and feel increasingly ill or sick or in pain and fatigue and will I lose my intellectual faculties and concentration just as they have been returning after a pretty horrible couple of years - I was just beginning to regain my inspiration and energy and strength and wellbeing and the hope of being able to resume my art career and study. All of a sudden has this gone out of the window? The consultant could not give me any time scales and I have no idea what to expect - if and when I start to deteriorate in different ways and how much life I have left - while I know we are all going to die - how much sooner will this happen and how will my quality of life be affected. Everything is suddenly up in the air and because of being silenced by the historic abuse within my family I am estranged and live alone and feel as if I am walking on a shaky stepping stone path across a river as all my sense of destiny and vocation with working life is changing and diminishing. Having also suffered for many years with deep depression which the chemo did exacerbate greatly for some months, I wonder if I can also expect that to return -- that sense of loss of soul. I wonder if anyone can relate to any of this and would be grateful for any responses. Thank you. OldSalt
Hi OldSalt and a very warm welcome to the Macmillan Community but I am sorry to hear about your journey.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. I have been on my incurable blood cancer journey for over 25 years now so I do understand some of the challenges you are dealing with.
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support and as you have seen the Community is actually divided into dedicated Support Groups (Discussion Rooms).
I have checked your activity and it looks like your post in our (Incurable Support Group) did not post.... there can a be a few reasons for this but let's try and get you connected in.
The Incurable Support Group is indeed a safe place for you to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Can I suggest that you copy the text from this your first post.......... then click on the link below…….
Living with incurable cancer - incurable patients only…….
......once the group page opens you can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
Hi OldSalt and welcome to the community from me.
In addition to the good advice given by my friend Mike Thehighlander may I suggest that you might also like to join us in the Cervical Cancer group? If you click on this link here, it will take you there and you would be able to put up your post again. (I’m happy to help you if you need any guidance on how to do this).
We have ladies in the group who are also stage 4 patients, and who are currently undergoing treatment so may be able to share their experiences of their particular chemo regimes and/or immunotherapy. There will certainly be support for you in the group, in addition to the support you will receive from the members of the Incurable Cancer group.
I hope to see you there to be able to chat further with you.
Sarah xx
Hi OldSalt
I’m so sorry to see you are struggling with getting to grips with the forum-I know it can be difficult when you first start using it.
Instead of me trying to explain how to do this, I will contact the admin team at Macmillan and ask that they help you out and make the post for you in the Cervical Cancer group (unfortunately that’s not something I can do myself for you but the team will be more than happy to assist). They can give you extra guidance too on using the forum and explain how it works.
Sarah xx
