Hi, I've been a member on here for a while and may have posted once or twice before but I guess that this is the first time I've actually felt in need of some support.
I was diagnosed with metastatic melanoma in August 23 - no primary found, secondaries in lungs. I have been reasonably positive and tried to remain upbeat as much as I can but I am suddenly aware that the little texts, messages and phone calls from both friends and family have been tailing off and I am suddenly feeling lonely and quite isolated, just at a time when I feel I need more support. My husband and son are wonderful but friends of 20 years plus and my sisters just don't seem to be around much any more.
I am feel particularly vulnerable at the moment as my oncologist and respiratory team seem to have different ideas as to what the current problem is. They are now bringing my PET CT scan forward by 3 weeks to try and fet an answer. Its the first time that I have been truly scared and just feel I gave no support.
Any advice you coukd give me would be much appreciated. Thank you.
Good afternoon,
it is so good that you had the courage to post here and be honest about your feelings. I was feeling very lonely a while back and gave myself the push to reach out to the community. It must have been one of the best things I have done in ages. Despite having amazing grown up children, the feeling of isolation and loneliness does creep in from time to time. Like Annette, I live in Scotland and due to sleep problems are up a lot during the night. I send you a big warm hug from Speyside
love Alana
Hi Alana
I'm in the same boat! Living in a remote part of Scotland, south of you. My social circle has dwindled to just seeing my husband (we don't live together), and getting phone calls from distant friends and family. Just wondering what you did to reach out to the community where you are?
I'm not a 'large group' person, and dislike 'group' sport activities.....any suggestions? The most popular social scene here is bingo!!!
I have insomnia too....a real nuisance. Can't complain too much though, as I feel generally OK health-wise at the mo. So if ever you feel like posting on here in the early hours, I'll probably be around!
Hugs
Kate
Hi Kate, lovely chatting with you. My MacMillan nurse got me a referral to The Oaks in Elgin for a 10 week session. Including complimentary treatments, workshops etc. I am not a great one for large group or joining up with people. My Ex Husband and I thankfully don’t have any contact at all since the children grew up. There is always a silver lining at the end of a cloud. How far South are you? I occasionally pop into the Maggie Centre in Aberdeen or Inverness. Living kind of in the middle between them both in a lovely rural setting. They are such great places to get information and if needed moral support without patronising one.
take care x Alana and cat xxx
Hi Alana
Thanks for the reply! I'm as far South in Scotland as you can get....any further and you'd be swimming! I'm a couple of miles from the coast, so I spend a lot of my time on the beaches pottering about, with Candy the dog. She has been swimming a lot this weekend, with the warm weather.
I have to travel either 35 or 70 miles to the nearest Macmillan centres. I do visit the nearest one when I go to have my scans, as it's in the same hospital. Lovely people! They actually helped to get my motability car last year, by contacting Citizens advice. I needed an automatic, as could no longer drive my heavy manual car. There aren't really any courses on offer there though. I do have wonderful Reiki or reflexology massages if I book in advance.
I am still married....coming up to 5 years, but we have separate houses.I needed space for a studio, and my husband's house isn't big enough to fit my stuff in. He was going to buy a house with me, but couldn't face leaving his....so I decided to buy a place for myself nearby. It's a good arrangement! We see each other pretty much every day, but also have our own space to do whatever we want. I know a few couples who have done this. I think it has saved my sanity!
I used to visit Aberdeen to see a friend who worked in the hospital there. I was always amazed by the huge empty beaches, and how clean they were! And I loved visiting the art gallery. It must be 30 years ago now.
Thanks for the chat!
Kate
Hi Annette
Well, I had my scan yesterday and my SCN rang me at lunchtime today to give me the news that the lesions in my lungs had grown and the cancer has also spread to my chest cavity, soft tissue near spine, adrenal gland and thyroid.
I was expecting the lung bit but the rest has really thrown me. I will be starting dab and tram as soon as they can get me an appointment- hopefully early next week. Am still trying to come to terms with it all. Seems like the respiratory team were right all along. In some funny way my brain is more at rest tonight. The uncertainty of everything was really upsetting me
Jean x
Hi Jean (J55), I know the results must have been a shock but at least now they know what to use to fight it.
The Dab & Tram Combo was the Trial my oncologist wanted me to get on but I failed the screening because the cancer had spread to my eye. However she managed to get me the Dab on its own, which was better than the alternative which was 'nothing'. The Dab being the Target Drug had a small chance of working on its own. Well the trials were finished and reported on years ago and now the drugs are registered and licensed.
Just taking one of these drugs worked a miracle for me ten years ago, I hope the two together get started soon and work their magic for you. I know what you mean about feeling calmer and it is because you now have a Plan! Good luck and please keep in touch!
Love Annette x
Hi J55
Sorry I took your thread off at a tangent, talking to Alana. Very rude of me.
I'm really sorry to read your latest news, and it's good that they are going to sort out some treatment as soon as possible. I really hope it works for you. Keeping everything crossed for you.
Hugs
Kate
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