Hi there...introducing myself

This is my first attempt at posting.  I was moved by the positivity of your post. I too was diagnosed with stage 4 malignant melanoma and told my life expectancy was 6 months to 5 years. That was 2 years ago. A large tumour was discovered and I only just made it through the surgery.  I had a special  radiotherapy treatment which worked at the first go! Last month I had the 4th consecutive  three monthly cancer free scan. And the oncologist told me the longer I stay cancer free, the less likely it is to come back. If it does, I still have immunotherapy as a weapon to use in my armoury which is achieving increasingly fantastic results. So my message is that there may be good news ahead and despite cancer and other health issues I will continue to do everything  I can to beat it and pass that 5 year forecast.

Good luck and keep safee

Mike

 Hi Mike and a warm welcome to the group! I was diagnosed in May 2013 stage4 MM. My oncologist fought to get me a Target Drug that was being tested. The original M was on my shin and after surgery I had a PET scan which showed it had spread to my lymph nodes in my chest, abdomen and pelvis. I started Dabrafenib in August13 after several major ops and stopped the drug in Oct16. I was told after a scan in Jan17 there was NED (no evidence of diseas). The drug worked for me and as you say, I too still have immunotherapy to try if it returns. I could also go back onto Dabrafenib as I didn't come off it because it had stopped working but because of extreme side effects! I have been very lucky and am thankful every day I am still here. I will be 70 in August and I didn't think I would be here to celebrate my 64th birthday, so every day is a bonus! Take Care 

Omg, such a rush of new members but to use a well worn phrase, the more the merrier.

Welcome to you all but my goodness, I would love to have met you elsewhere instead. Lovely to meet you of course, some of my friends have already introduced themselves to you and there will be many more coming along. I'm so glad you have found us here and by now you will have felt the comfort and friendship that is in the best club  or group that I have been in for support. Families and friends are certainly great but here we have more of an understanding of how you feel deep down-the worry, fear and loneliness that we understand because that's what we have been and are going through. I'd guess that you have already experienced a warm feeling when your name is mentioned by someone offering the hand of friendship.

For those that are living alone, ir you are feeling lonely and isolated just drop a line to the group and someone will soon contact you for a chat. Don't forget too that you can pick up the phone if you need to talk to someone in MacMillan regarding financial needs and I must say that I have had the best advice in that area after contacting MacMillan.

cont...

 
continued from prev message (due to technical issue posting longer messages)

I have been around these parts for 3 or 4 years. I was diagnosed in March 2015 with a very rare blood cancer, MDS (Myelodysplasia - no, I had never heard of it before either). Since diagnosis I have been having treatment every week in the form of an injection that now I give myself, I'm coming close to 300 injections now. My Haematologist tells me that I am very lucky my body is responding so well. I was 57 at the time of diagnosis and was not expecting to see my 60th birthday and now I am 62 . Lately I have had a couple of months when my blood has not been so good and I was neutropenic which rattled me but I bounced back. 

I was unfortunate that 4 months after diagnosis, I developed a severe back problem which 3 months later after continued agonising pain, my GP and nursing staff contacted the local branch of the Red Cross who loaned me a wheelchair until the social services delivered one to my house. The pain is still severe, day and night, although eased somewhat when I sit down. I'm taking a high level of morphine which still doesn't take away the pain but the chronic pain specialist along with my GP advise against a higher dose.

Well, I think I shall try to get some sleep and no doubt we'll speak more soon.

Take care and stay safe

Tvman xx

Hi everyone

Steph from admin temporarily solved my posting problem by splitting my post in two and sending both parts as above.

Now I can't upload photos in the gardens 2020 thread. I've tried uploading and sending photos with and without dialogue but no success. Grrrrr.....! (Apologies, KTatHome)

Definitely not my day. It's Father's Day too, I'm supposed to be relaxing. Have to go out to the garden to relax now. I shall talk to my tomatoes in the greenhouse, they'll be sympathetic .

Tvman xx

Hello to , and ,

I haven't got anything to add to what has been said by others but just to say welcome to the group.  I look forward to talking to you all.

Gragon.

Hello one and all,

thought Id pop in to to say hello, it will be five years in July when I had my incurable diagnosis, I didn’t expect to be here after one year let alone five, certainly didn’t expect to be a complete responder to treatment, and then didn’t expect a bumpy recurrence, I don’t know why, I suppose it was the optimist finally coming out. I think most of us have our stories in our profiles, and enjoy coming in here for a moan or a cheer up and sometimes both.

(tvman, I’m in a good mood at the moment so your grrrr is reminding me of the Frosties advert, you must be the Tiger  although I know you are not really saying Grrrrrrreat ) I’ve had trouble posting myself today so went out for a nice walk instead. I was going to add a photo but I couldn’t do it either but I’m sure things will get back to normal soon)

best wishes

Hello all, well what a lovely warm welcome - thank you. Also so great to hear some positive outcomes from really bad diagnoses.

I hope you have all had a better weekend than I have, with increasing exhaustion (which blood tests that come back 'normal' showing that it's down to the cancer) Palliative Care put me back on steroids to give me some energy. They haven't worked, in fact they have just upset my stomach, and I am now at the stage where I need to call them in the morning and tell them I'm just not coping. My heart is pounding out of my chest just walking from bed to the loo!

I don't know what this will mean, and I'm scared, but I also feel a sense of relief. I just can't get anything done, my house is becoming a tip around me, and I just need a rest. Whether that's a hospice admission, I just don't know. Wish me luck - I'd have done it today but I am signing my Will at 11am tomorrow, and I just HAVE to get that done!

Best wishes to you all xxx

Dear tvman and Gang,

Happy belated Fathers day, I hope you had a wonderful meal.

I finally got my photos posted under gardens but I had to reduce the size - perhaps the Macmillan servers are running out of room?

I made the photo into a jpeg and cut the jpg size to 300 kb then they loaded easily.

Hugs to all,

Millie

Dear ,

Welcome to the community and I am so sorry that we have met this way. This is a wonderful group of proactive incurables. and there is kindness here with knowledge of working with the system.  I am still being treated, but I understand how you are feeling lonely- I also live alone and with the pandemic one can feel so isolated even without health issues.

You have been given great advice about how to find help, but I have found that sometimes I have to push to make things happen.  I hope the palliative care team's meds are making you feel better.  

Are you able to step outside and be in sunlight? Sometimes I forget that going outside is good for the soul until I am outside. I hope you are able to do that.

Please let us know how you are feeling.

Hugs,

Millie