Struggling to stay positive

Hi TheGoodlifeNZ Really sorry to hear this , You are not alone in how you feel and it is only natural to have all these worries. We are being tested to the max but all these things just make us stronger. Dont beat yourself up you are doing a great job and dont forget that , I am similar and sometimes feel like I am never doing enough. Take one day at a time is my advice  . All the Best Minmax 

Thank you Minmax, knowing I’m not alone in having these feelings is really helpful. Taking one day at a time is good advice - it’s my usual mantra, just today was a roughie. All the best to you too. 

HI GoodLifeNZ Thank You it really is the pits when you are in pain and you have no one to talk to or relate to . It's a breath of fresh air speaking to someone in the same boat . Take it easy All the Best Minmax 

Hi Guilia, it's good to hear from you again, though not under these circumstances, but please rant away and let it all out, it's a necessity at times, so sorry to hear about Pembro's effectiveness waning,  and will have everything crossed your Ipi combination is effective.

Totally understand your down days, the pains, the restrictions it puts on your life, never knowing how you will feel waking up, and personally, is treatment really worth it. I know it can be tough at times, but  my answer is YES, I've had quite a bit of crappy news lately, , but refuse to give into this bastard disease.

Be strong, focus on the positives, enjoy the little/important things in life and love yourself,

My best wishes to you and Roger,  Eddie xx 

Thank you Eddie, I really appreciate the understanding, from you and Minmax. I’m struggling a bit more recently because in my last ‘group’ post, I actually told it like it is, how awful the last three weeks have been and I feel like I’ve either scared or turned people off judging by the lack of response. It feels like it’s fine if it’s good news, but no one wants to hear when it’s not. Mind you, I do understand that people ask themselves what they can truly say? That’s why this place makes a difference. I’ve been warned off the local cancer society by three separate people who say the person in charge is only interested in the status of the position, not the people, but maybe I should reach out anyway. My experience could be different and then maybe I wouldn’t feel quite so isolated when it’s hard times rather than good times. 
Thanks again and sorry you’ve had some crappy news - let’s both not give in to this bastard disease!

Morning Guilia, your welcome, sadly the forum isn't what it used to be, we had technical issues a few months ago and many couldn't access the forum and as it lasted quite some time, I think sadly some gave up on it,  plus its the weekend, always quieter then, there are still a few regular posters, though some "understandably" are also going through a tough time. Not been on myself much lately, but im on a little more now, 

I promise you the guys on here don't get scared off with bad news, we all understand how important the support we give each other means.

I think you should give your local cancer charity a try, it's the guys with cancer who are most important , just finding one person you can connect with can make a big difference, can I ask did you get in touch with your fellow Kiwi, Taichi I think was her username. 

Your always welcome to contact me anytime,  and I know a lot of the guys on here would say the same, we had a new member, who said, I have cancer, cancer doesn't have me, which is my thoughts exactly. Take care and don't be a stranger, you have friends here. 

Eddie xx 

 Hi TheGoodLifeNZ Hey you speak and  say whatever you want I am with You . Stuff any begrudgers I havnt time for them. We are all getting bad news but  it is the way that we deal with it  all that makes us so different. All the Best Minmax  

Hi TheGoodLifeNZ, Firstly an apology as I have just read your post, I have been on holiday and then had a few problems signing in!

I don’t think we have chatted before and after reading your Profille I think maybe when you first posted I was away if it was Feb/Mar 24. We go away as often as possible! I also have been diagnosed with Stage4 Malignant Melanoma with spread to Lymph Nodes, Chest,Pelvis and Abdomen. At that time my oncologist managed to get funding from one of the Drug Labs for me to get a trial drug. (It wasn’t available on the NHS) It is all n my profile, although it’s been a while since I updated it as I thought it was too long as it was. If you feel like you can plough through it you could ask your oncologist if you could possibly go on a Target Drug or similar. They have developed new drugs for melanoma treatment since I was diagnosed so there may be others you could try. I am not sure of the situation in NZ but if you have Insurance does that not cover it?

Please don’t give up. Some do say if you have an initial bad reaction to a drug, it means it is working, so I hope this is the case for you!

Hi Annette, nice to meet you and please no need to apologise - it sounds like you have a busy life which is fantastic.

Having read your bio I’m astounded and inspired by your tenacity and positive outlook. Here I am whinging away after only 9 months of MM, where you really have been through the wringer! I’m so pleased for you that you’re clear and doing OK. I truly am hoping this awful pain means it is working and your story gives me hope.

One of the reasons I’ve been feeling so down recently is that I’m scheduled to fly to India in 4 days time with a dear friend. We’d been talking about going for years and finally decided to do it, booking our trip in January before I was diagnosed. I’ve been absolutely determined to still go - I wont let this bloody thing define me or stop me. But when I posted this thread, the pain had become so unmanageable that I started to wonder if I would be able to.
I’m lucky to have a great team helping me so fingers crossed we can resolve it in the next few days and I can still go.

Re the treatment .. my medical insurance doesn’t cover anything that isn’t on the NZ approved list so anything further is not covered aneeds will need funding by us personally. On the plus side of that, my life insurance paid out in full early because of my condition so we won’t have to sell the house which I’m very happy about. My oncologist spent some time in the UK and is very involved in trials so I’m sure if there’s anything available he’ll let me know but I will ask him about the drug you took. 

Im not going to give up, refuse to really … I have too much still to do .  

All the best to you and thanks for replying.

X Guilia

Hi Guilia (TGLNZ) A trip to India sounds amazing! Once your Team get the Pain under control, I’m sure you will feel more excited than worried. At least I hope so. We go on holiday as often as we can even although I can’t do the things I used to do, it is great to get away with my husband and soul mate. He is very understanding and realises that even on holiday you can have the odd day or two where you just have to rest, so that is what I do and the following day I feel so much better for it.

You say you are going with a dear friend, so that is good. Just explain to her that some days you may have to rest more than others and you can’t do a lot of things in the one day, the way you probably used to. I am sure she/he will understand and just be excited to go! My advice would be take any medication in your hand luggage and take a copy of your prescription with you. I always do and that way if there are any delays or luggage arrives late, you have all the meds you need. I put mine in large see through zip bags, so they can see everything without taking everything out. The controlled drugs like morphine etc, I put in a separate see through bag and they usually check them off the script.

Please let me know how you get on with controlling the pain. That is great your oncologist is interested in Trials etc as it can only help.

I have been signed out twice now and realise there is maintenance on the site overnight, so I will hopefully post this now before I loose it completely. Stay in touch!