Single mum, 47, advanced cervical cancer, on immunotherapy

Hi Kaylee24 , sorry that you find yourself here.  I'm in the annoying position of having typed a fairly long reply to you, clicked reply and it seems to have disappeared.  It may reappear so I'm reluctant to fully retype!

You're not alone. My cancer may be different, but a lot of your story resonates with me.  My last prognosis was 1 to 2 years and that was in May last year.  It is hard to accept that I am unlikely to reach 60 when I used to tell the kids that they had to plan ahead for my 100th.

My three kids are all away at university.  Thank goodness for WhatsApp. I do have the huge advantage of a supportive wife.

I often read these threads in the early hours of the morning.  Poor sleep is a side effect of my treatment and it's helpful to me to have something quiet to do.  So thanks for posting.  Love and hugs.

Now I will try and reply again and see what happens.....

Thank you for your reply 

Oh I do hate it when that happens especially as I'm the type to write a lot, so find myself really infuriated when my words vanish!

It's nice to hear I'm not alone in the planning ahead for my old age, and then finding that was never on the cards for me.

My sleep is hit and miss, I've always loved my sleep, so I don't cope well when I can't, but its good to know I can do the same and come here to virtual chat with others.

Love and hugs to you and your family

Thank goodness one reply got through.

I am curious about how you're helping your kids through this.  I started off by trying to only focus on a positive message with my kids, and my parents.  But I found it hard remembering what I had told them.  Now I tell everyone the unvarnished truth and it's much easier for me.  I think it also helps prepare them.  The kids never know what to say though and tend to absorb the news and stay fairly quiet.  It leaves me unsure how they're coping or if they fully understand.  I'm interested to know if you, or anyone else, has found ways of engaging with their kids or getting them to support each other.

I know my daughter speaks to a councillor at university but the boys don't.  I wish they would.

Anyway, it's 4.30am at the moment and I'm wide awake.  Planning some tasks in the garden today.

Love to you and have a good day.

Hi SandyN,

Apologies for this very long reply!

Wow my kids do the same re absorbing news and staying quiet, and I also have no idea how they are coping or if they actually understand any of it!

It's a tricky one as my eldest son (27) is currently being assessed for autism and so processes and expresses things very differently to what most of us are generally used to, and he's very hard to read, but he appears the most anxious about my shortened life. So with all that in mind I keep things relatively simple when letting him know what's going on, unless he asks directly, which he rarely does.

My eldest daughter (24) who's a mother herself, is a huge support to me, and I'm very open with her, though I'm mindful as to not lean on her too much and feel I should be more of a mother still for her even though we are very much like best friends, yet she gets frustrated with me, and saddened, if I keep things to myself and don't "let her in" (it's a hard one to balance).

My youngest son (15) has always been very close with me but naturally as he is becoming a man and dealing with puberty, he has "hardened" and is wrestling with messages from society and the men around him, about what it is to be a man, and so I get very little from him as to how he is feeling and how he is coping. He almost never asks questions and appears to act like a normal teenager, and as though I am perfectly well and things are just as they were. I tell him the bare minimum (apart from when I was initially told it was incurable - when I told them all, the unfiltered truth) as he never reacts or says anything, and I have no idea if he is even listening properly, or like you say, if or how he is coping. 

My youngest daughter (13) is more thoughtful and sensitive to my wellbeing and health, but again asks very little questions and appears to be a normal teenager too. Honestly you'd think I was perfectly fine the way they are at home with me, and at their dads, and at school. Which is great, but like you mention, I just then have no idea how they are coping, and feel worried I'm not taking care of them. If I ask how they are or mention it, they go quiet and just say they are ok and fine etc, they look almost affronted to be asked, and probably don't want the reminder. I assume it's how they cope, and until I'm visibly unwell, or nearing the end, they'll continue that way, which I guess is normal. It's difficult to know what is teenage behaviour and what is mum-has-terminal-cancer behaviour.

All in all, I always tell my kids and the wider family the truth about my prognosis and treatments etc, I haven't the energy to keep things from people and remember who knows what. I do end up putting a positive spin on everything though, but only because I intuitively sense they don't know what to do with the reality. My wider family all respond with positivity and hope, to anything I say, and shut my down if I try and be real about things, even when I am "light and breezy" about it. It's frustrating and quite saddening for me, as it feels dismissive, but I know they don't have the mental or emotional capacity to deal with these things, or the language, so I meet them where they are at.

My kids all get on well, and I subtly try and get the older ones to support each other (just by getting them to spend time together alone), I'm lucky in that my eldest daughter is very emotionally intelligent and extremely kind and loving and so she does a lot of the heavy lifting in that regard. She and my eldest son are seeing more of each other now, which I hope will mean when the time comes, it'll be easier for them to be there for each other and gives me peace thinking they'll have each other when I'm gone.

She is also very close with my younger two, especially the girl. But I don't believe they talk about my prognosis, but I feel like its setting the foundations for that, in time.

I don't think you can push these things, just subtly influence. For example, I'll mention to one about the other, and vice versa, suggesting they would like to see more of them. Or I'll find ways to craftily make it so they have alone time with their sibling.

Eventually I might drop hints about how their sibling might want to talk about my cancer, I'm not sure though, as I might just leave it to naturally happen. I think as long as they spend time with each other alone, it might naturally happen if they want that, and if not, it just sets up a better relationship to be there for each other, even if that's just to be in each others company. 

Personally I'm not close to my own siblings, and so I'd not want support from them if it was my mum, so at the end of the day, it depends on the individuals. 

Making sure they have some support is probably more important, checking who they have in their life and if they feel supported or have someone to talk to. Like you say, even if it's a counsellor. My eldest daughter sees a counsellor too, it's helping her immensely and I'm so relieved she has that in place. My eldest son has tried counselling in the past for other mental health challenges, but never took to it. My youngest daughter had a short course of counselling of sorts, through school (but she said she didn't get to talk about her feelings it was just self care and anxiety tools) after my original stage 3 diagnosis, but I wish both the younger two had counsellors to open up to, as they don't talk to anyone about it in the family, and certainly not with their friends. 

Unfortunately I feel like our society is in denial about death, and that generally people just cant cope talking about it, but then that means no one has someone they can turn to in their circle of family and friends for support. People just offer acts of service, but they cant actually talk about it. It's very isolating and leaves our loved ones unsupported. 

Again, so sorry for the mammoth wall of text!

Hi Kaylee24 

No need to apologise for a long reply.  You may not realise just how reassuring it is that other families are in exactly the same position.  It tells me that the response from my kids is quite normal and I can't thank you enough for that.

I'll carry on with the same approach of telling them everything.  And yes, I always add the positive spin too.  A parents natural instinct I guess.

I have broken down a couple of times recently when giving them news, such as my Do Not Resusitate letter.  I actually think my emotions might have been helpful in getting the message across.  I also found a recent visit from the local hospice to be very worrying, but there was no need to be concerned, they were very nice and the visit proved reassuring.

Thank you for your reply.  You helped me a great deal.

Lots of love and I hope you have a good day.

Hi Kaylee24   I'm Mary (50) and also have advanced cervical cancer - spread to lymph nodes, hip bone, kidneys and brain. I've had 3 of 6 rounds of chemo and immunotherapy and target therapy (presumably the same as you have just had). It keeps being delayed though due to low platelet levels. 

I don't have any children, but can completely understand your heartbreak at leaving them sooner than you would have ever thought. I got married earlier this year (just after my terminal diagnosis). We've only been together 3 and a half years and we are both gutted that after finally finding each other our time together will be cut short. 

I have also struggled with my mental health over the years (I have wanted to die at times, but I must say that I have never acted on these feelings). I have never wanted to get old, even though I've always presumed I would due to good genes in the family. So now I have this diagnosis it's a bit weird really, conflicted between "I've always wanted to die so now I will", "I don't want to ACTUALLY die...the pain, the finality", "I don't want to leave my husband, he will be really sad". 

I haven't come across many people with advanced cervical cancer. I hope the immunotherapy continues to work for you for as long as possible. You can read my full profile by clicking on my name. 

Mary x 

Hi Mary,

I can't thank you enough for replying and sharing as (as sad as it is to hear what you are going through, and wishing you weren't going through such a painful time) it brought me great comfort to not feel so alone, especially as I too have struggled with suicidal ideation since my early 20s.

I have really wrestled with feeling like I've maybe been punished for wishing to die and wasting my life just trying to get past my own ego (my low self esteem, lack of confidence, and lack of joy and motivation), and the new reality of dying in this way (which is anything but quick and painless), amongst many other unpleasant thoughts and feelings.

Unfortunately my diagnosis hasn't made me like life and living more either, I haven't experienced a new found appreciation for life, like you hear of so often from people, but I'm getting better overall with my mental health, the further on I go with this new path, and I'm actually quite hopeful things will improve psychologically for me, even if my physical wellbeing continues to decline.

It seems strange to have wanted to grow old and also have wanted to die at the same time, but in my mind, old age was like my imagined salvation, as I could never have attempted to take my own life, I could never do that to my children, and I lived my life for others and to one day get to be old. And the freedom and liberation of old age, and the wisdom and growth I imagined was possible.

It was a way for me to dream of finally enjoying living and to maybe finally like myself, it was my light at the end of the tunnel on my darkest days. This is something me and my counsellor are working on now, so I can live for now and die in peace, not hating myself .

Congratulations on your marriage and I'm so happy you are experiencing love like that, it's wonderful! Bitter sweet I know, and almost cruel as you have only recently met, but I wish you as much time together as possible, loving and supporting each other x

Thank you for pointing me to your profile, I think I should similarly write about my cancer journey, so that I have more chance of making friends here!

Hi again Kaylee24 , I feel that most of what you have written here is how/what I'm thinking. I just find it hard to write down. You articulate your thoughts so well. 

Hi

I am 49 and have advanced bowel cancer. I do not have any children. Like everyone here I thought I would live well beyond 60 and enjoy my retirement one day. My husband and I were looking forward to our retirement very much and it is sad that it will never come. 

I received the news last December and was very low for a while. However, people here have really helped me. Right now I would say mentally I am in the best place since I was 15. I found it was liberating not to worry about the future anymore and accept the worst has already happened. I live one day at a time and enjoy my life as much as I can. I try to make plans small and big so there is always something to look  forward to. There are still ups and downs but most time I am in a happy place. 

Be kind and patient to yourself and hopefully you will find peace too. Xx

Thank you Stella2020 

What you say about finding it liberating not having to worry about the future anymore, felt a welcome relief to acknowledge. I'm hoping to feel enormously liberated from not really worrying about anything much at all , as time goes on.

And wow, to hear you are in the best place mentally since you were 15, in a way I can actually imagine. It's so uplifting to hear! I feel I have spent most of my life in one kind of existential crisis or another or have had some personal drama or other come find me, and so being terminal ill, and making your circle of concern and focus smaller and smaller, does really help turn all that noise off, and let all that nonsense go. 

I'm saddened for you and your husbands loss of retirement. I have had to try and see this as my retirement years, albeit in a less able body than I'd like, and with more medical-messing-about than I'd envisioned, but it's a huge adjustment at 47.

I still feel I haven't caught up with the last 18 months, when my world turned on its head and I went from believing I was perfectly healthy and rolling my eyes at the arrival of perimenopausal symptoms, to dealing with cancer and facing my mortality.

I think being on these threads is the first time I'll really truly started to process it all properly.

I'm so very grateful to you all  and for this online community!