Stage 4 out of the blue

Thank you,  you are making me feel a little better. ive had to be string for so many years just to be able to function,  and now I feel I can't do it any longer,  but being brave hasn't done me any favours,  when I have attempted to ask for help, (mentally, physically or otherwise,  people are so shocked and brush it off by saying 'but you are so strong? Ect and other stuff,  it's almost now seen as a weakness when I try to explain how I can't cope any longer and need someone to be strong for me for once.  It doesn't help  I discovered that I have to wait another few weeks to discover if I am a suitable candidate for the immunotherapy. Ni feel the clock  is ticking fast .thanks for being there. I'm so sorry atm it's all about me.

Being strong, I’ve found, isn’t always to your advantage because others don’t feel you need help. But the bravest thing of all, and the thing I found hardest, was actually asking for help. It was a huge change of mindset for me, as I’ve always coped with everything thrown my way and been seen as strong, but my goodness-asking for help, and getting it, has been a game changer for me. 

Others can want us to move on, get over it, because they don’t really understand what it’s like to have cancer-it can make people really uncomfortable about facing their own mortality. When cancer returns, it is even more uncomfortable because they assumed you were “better”.

Have got any organisations or groups close to you like a Maggie’s Centre? It can be very helpful to connect with others, even strangers, who understand. Can you get outside into the sunshine with your dog? A simple thing like that can be beneficial for our mental health.

Your team will need to do testing to see if you have the relevant markers which would make immunotherapy suitable for you, so that all takes time. We want things to move quickly for us, but they rarely do and that causes so much extra stress for us. 

Please never be sorry for making this all about you-of course it is, and rightly so! 

Sarah xx

I dint know the area very well as only been here less than a year,  yes luckily enough I have to get on with things dog-wise,  although she is elderly and I worry about losing her before I go ,but equally worry about her if I go before her. Ny children are fantastic,  son is a paramedic and daughter a teacher,  but they live far away.  I had to move this far away due to my abusive ex , as he basically took all my savings,  soni had to sell up and move 100s of miles away to somewhere cheaper. They also had a bitnif a rough childhood due to ke being ill and in and out of hospital.  They are the type who  will give up everything to help me, but I don't want that, 

My children live far away too, and to be fair I have tried to shield them from much of what I have gone through since 2018. I’m not sure if that was a good or a bad thing quite honestly because they have never known how difficult things were for myself and my partner. I’ve never asked for their help with anything-they both have busy lives.  I moved here in 2012, but I don’t have a network of friends here so it makes it quite lonely.

Having your doggy means you need to be there for them and hopefully it gets you out and about a bit at least. I have 2 cats and they are wonderful company for me-they stay indoors, and there’s  nothing like a purring kitty on your lap to make you smile! 

Sarah xx

Animals are such comfort.  I can't thank you enough for talking me down,  I felt bereft  last night,  I also feel you are one of the nearest people who may have some sort of inkling of what I've been through in the past  and present and future.  I have had my appointment come through for next Monday to see the oncologist,  I get more answers then, they also want/need to love me to a hospital closer as at yhe moment I live north Essex and have to go to west London,  I can also ask how long I have to wait for the test to see if I'm suitable for the immunotherapy which is making me anxious. Obviously, I want it, but I'm also frightened of the effects x

I could see how lost you felt last night, and I’d always try to make sure in my Community Champion volunteer role that I try to engage with every new member- I would have wanted someone reaching out to me when I joined.

It’s very rare even in the wider Macmillan community to meet someone else who has had their vagina removed-it’s uncommon in general-but I can empathise with how you’re feeling and it’s important to be able to share direct experiences with others, even though your situation was very different to mine-the feeling of loss and the impact on our lives is very similar. 

I haven’t had immunotherapy myself, but have seen good results with personal friends who have told me they found it kinder than chemotherapy with less side effects. You will be told of all the possible side effects of any treatment, and you need to sign a consent form, but it’s important to remember that everyone is different in their reaction. I found chemo very easy for example, was never sick or even nauseous but others found it harder. Others found radiotherapy very straightforward whereas I found that difficult and I had side effects as treatment progressed. 

It’s good to focus on the potential benefits of any treatment and not assume that you will get all or indeed any of the possible side effects. Being treatable is the main thing to concentrate your mind on. 

I hope your treatment can be done at a hospital more local to you-I was treated at a hospital 1.5 hours away, and found that tiring in itself with all the travelling. 

Next week you will hopefully get some answers and get the ball rolling for these next steps. Will you have someone with you? It can be good to have an extra pair of ears and also good to think of any questions in advance which you’d like answers to. Write down anything you want to ask while you’re there- It can be easy for our minds to go blank at appointments as I know! 

Sarah xx

Yes my son is coming with me ,I'm supposed (hopefully-I think) to be having chemotherapy AND immunotherapy both at the same time,  a bit brutal  I think but I'll take anything and any  glimmer of hope.  Thank you for your help, mind you as we speak,  the hospital just cancelled my appointment,  not sure why, but supposed to be now on Tuesday but no idea of time.  X

I’m glad your son will be with you for some moral support. It’s normal to have a combination of chemo and immunotherapy, so once you know the plan you could put up a new post in the group saying the type of chemo and immunotherapy. That will hopefully allow more people to see it and get responses from others going through the same.

The more info you can give, the more it’s possible to connect with others. 

Cancellations are very common for different reasons but at least it’s next Tuesday so not much longer to wait. 

Take care, make sure you’re eating enough and try to get some sleep. Your brain is in panic mode with the information you’ve had, so try to be kind to yourself.

Sarah xx

I feel like you are a true angel, who was sent to me,  and I'm not even spiritual.  So thank you xx

I’m just very glad you’ve joined us and we can try to help support you through this, but thank you so much for those words, which are really appreciated.

Sarah xx