New to the group and inspired by the togetherness of the group. Lovely to see there's support.

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Hi everyone, 

I have been muddled up with this site on my phone and have messaged in wrong groups so I apologise if you've read this before.

I am 39 years old and have recently been diagnosed with stage 4 melanoma cancer with multiple brain and lung metastasis. Obviously this was a shock and hearing the words we can "only try to prolong your life" was hard to digest. 

I had a 2.9mm nodular malignant melanoma removed from my upper back in 2018. I had wide local excision and sentinel node biopsy which came back negative. Unfortunately 3 years on during a routine head scan for my eye check the brain tumours were found and the rest followed.

I've had 5 sessions of full brain radiotherapy and have currently had one round of immunotherapy Opdivo(Nivolumab) and Yervoy(lpilimumab), my next round is on the 28th of June.

I have always been a positive person and that is not going to change. I have to believe that miracles can happen. I am the proud dad of 7 year old twin boy's. My boy's were born prematurely on 24weeks gestation, they had a horrendous start to life spending many months in intensive care. They're both now non-verbal autistic with severe learning difficulties but they're amazing and my absolute reason to keep going. I can't even think of not being here for them and leaving my wife to bring them up alone. 

Everybody's journey is different but I hope you're all having good news with your own personal battles. Don't lose hope because as my boy's have shown me, miracles can and do happen.

Has any body had some positive news lately with immunotherapy?

All the best,

Steve 

The strongest people are not those who show strength in front of us, but those who win battles we know nothing about.

  • Hi Annette,

    Sorry for late reply the site wouldn't take me to my groups it was just saying I hadn't joined any.

    Yeah hospital food was horrible, I've been stocking up on chicken Madras and magnum ice creams so I've put another half a stone on.

    Yeah being away from boy's was hard but I've got a nice little trip to centre parcs planned with them soon so that will be nice.

    Hope you're ok

    Take care,

    Steve 

  • Thanks Annette, my scan results were still stable which is a huge relief, and decision on further treatment will be made in December now. My husband moved out 2 weeks ago, I am still in huge shock and grief, it's hard to believed he doesn't love me any more after all those years, and I feel I am still the same person, just needing more support but still able to support him too. Today is a particularly bad day, spent ages crying. On top of that my car has got a puncture / flat tyre today and I know nothing whatsoever about how to deal with it, I have asked my son but he is also clueless, and I hope he can get it sorted as I am so overwhelmed. And I need my car to be able to see my friends etc. 

  • Thanks Steve. Yes I am trying to get through but it's hard (as I said in message to Annette), glad you are feeling a bit better and sending good wishes.

  • FormerMember
    FormerMember in reply to Tess73

    It's a bastard Tess, try to put things behind you once you have dealt with them. Husband being number one to dispense with. Easy for everyone on here to say but you have to keep your strength for those things that you can sort out now. You have got friends, ask them to send a husband or boyfriend over to sort out your car, someone must have some mechanical skills.

    It's been two weeks, still raw I would imagine, you are the only one who matters, you must look after yourself. Everything will slot into place eventually. It must seem so hard to you, we on here can't imagine but a new life for you is around the corner.

    Wishing you the best,

    Xxxx

  • Thanks Norberry you are right and I'm impressed and touched how supportive and fast you are with your responses to people x

  • It’s sometimes the ‘simple’ things which brings emotions out. I hope your day crying has enabled you to grieve and move on. I hope your son can learn to understand that as an adult his mother sometimes needs a little extra.  They do step up, my son really stepped up when I went through chemo. So sad as a dad feeling so hopeless but great to see his strength 

  • Hi Tess, Crying is a good way to let some of the emotions out and as they say, better out than in, as your stomach gets tied in knots if you keep it in! Regarding your car! Do you realise that if you are on the higher benifit of PIP, it is possible to arrange for a car through the Motability Scheme, depending where you live. Or join the AA, RAC or similar, then if anything happens to your car, they will come out and sort it. Not long after my sister threw out her husband, she had a puncture, she tried to get the tyre off herself but because the garage had used a power socket set to put the tyres on, it wouldn't budge! She phoned me and I said to phone the RAC or similar and when they come out, you can join there and then. If you are alone in the car, they are very quick to come out to you especially if it is dark. She said it was well worth the money for peace of mind because she broke down 40 miles from home and they took her home then came out the next day with the part to fix the car! Maybe worth a thought!

    I'm sure even although your son(s) don't know about cars, your adult children will support you in other ways, especially from now on! By the way, we all have our crying days or sometimes sob at a silly thing on TV, then can't stop! You will be pleased to hear......you are normal!! Lol!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Thank you Annette. My son did organise to get the car fixed which was good, he did get out of his comfort zone to do that for me, which I am pleased about. And yes I'm going to get breakdown cover now! You're right about crying, some days are like that but yesterday and today so far not so bad. I find that if I write it down it helps - I sometimes write letters to my ex that I will probably never send but good to get it out there (I might send them after the finances all sorted out!)

    X

  • FormerMember
    FormerMember in reply to Tess73

    You are one step up the ladder Tess, another step every few weeks and you will see that light at the end of the tunnel . I bet your son is pleased he was able to help his mum out. He has made that step up the ladder too.

  • Hi Tess, I had an idea your son would come to your rescue! If he knows nothing about cars then you can't blame him for being unsure about helping but the main thing is, he came good in the end and I'm sure he feels the better for it.

    Remember we are all here when you can't sleep etc and always willing to chat! I think you should send the letters to your husband but waiting until things are sorted out seems very sensible. Good for you! You're thinking logically about it now, so that's a feather in your cap!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!