New here. Supporting my Brother

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Hi everyone, 

I'm new here to these forums although not very new too coping with family members with cancer unfortunately. So I'll start at the beginning but try and not make this post too long. 

My older brother Chris who is now 49 years old, was first diagnosed with cancer in the Carotid Artery  in his neck in 2010 which was caught early and he had surgically removed with a course of radiotherapy after to kill any cells left behind. After frequent check ups he was given the all clear a while ago. He has had numbness on the left side of his neck where the cancer was after the surgery but no other complications from this which was good. 

In August 2017 we were given the devastating news that my mum (68years old) was diagnosed with Non-Hodgkin's Lymphoma Stage 4. After fighting like crazy and going through so many complications throughout the chemotherapy, T.I.A's, sepsis, causing chemo to be reduced each session meaning by her 5th session she was only getting a quarter of the treatment she needed and then refused the final session knowing by then that the chemo was not touching the cancer and it was already spreading rapidly. My mum lost her battle in March 2018, a very short 6 and half months after diagnoses. My mum was our rock. We have an older brother and a sister who is older than me but younger than my brothers. But my big brother Chris and I are really close to one another. 

A few months ago Chris (my brother) began having seizures regularly. One in which caused him to fall and have a bad bang to the head. A week later he began to suffer from double vision and was very imbalanced on his feet. Walking as though he was intoxicated which was impossible as my brother doesn't drink. So I took him to A&E again and this time I was there which him to make sure he had the scans. we were there from 10 in the morning to 9.30 at night (believe me when I say it was a mammoth task to keep him in the hospital that long to get the results. They performed a CT on the brain and chest and an x-ray. We were then told that unfortunately the CT scan had picked up tumours in his brain. We asked if there was a chance it could be cancerous and the dr informed us that he needed no test to know that it was cancer that had spread from another part of the body. Cancer of Unknown Primary. They gave him the option of staying in hospital and having more tests done while there the few days after but he was not staying so he is being treating in the outpatients ECAS unit. He has a CT of the chest, abdomen and pelvis and a MRI on Tuesday which I think will hopefully determine where the primary cancer source is and the MRI should tell us how many tumours we are dealing with as they know there are more than one. Which is terrifying giving that he has already started showing the symptoms of these. 

We are in Scotland and Im just wondering if anyone has been through this and if they can give a estimate of how long they waited for the CT and MRI results? I have read it could take up to 2 weeks, Im terrified that this is fast growing and time is of the essence here. Its horrendous at any time of year to wait for answers when it comes to cancer but this time of year it just feels like we cant function until we have the results. I mean I know how I am feeling in myself about this but I can't even begin to imagine how my brother is feeling and thinking. He struggles massively with his mental health so I am trying my very best to be there for him without suffocating him. But I just need him to be strong and try to fight through this as best he can. 

Wow. I am sorry this is so long. Its not something you can write in short sentences. 

I hope if anyone has had a similar diagnoses can, in the best way, give me some advice on how to cope the best we can while waiting and how to support my brother the best I can with any results we get. 

Thinking positive. As much as I can, without researching and jumping to conclusions. . 

  • Hi  and a very warm welcome to the Macmillan Community but sorry to hear about the journey your family have been on and now you are dealing with your brother.

    I live in Inverness and have had a CT and MRI over this year and once they were mentioned both were done within a 2 week framework. But it’s coming up to silly session in the NHS with the holidays on the cards so I would be chancing u the departments/clinics that are looking after your brother to see where things are at.

    A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type and support challenges will help a lot (I have a totally different type of cancer)

    The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Unknown primary cancer support group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.

    As for the practical and emotional challenges of supporting your brother Chris you may benefit from joining and posting in our Carers only support group where you will connect with others navigating the exact same support challenges.

    To connect with a group click on the “Bold Italic Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

    You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

    It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.

    It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow a few working days for a reply.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.

    Do get back to me if you need further help navigating the community ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you Mike for replying so quickly. Yes the CT and MRI were booked in less than a week after we were told he needed them so thats a positive, he will have these tomorrow so hopefully its not too long after that that we can get results and find out what we are dealing with. As you said its coming up for the time were NHS will be even more short staffed over the festive period so can only hope we dont wait too long. 

    I will join those groups just now, thank you for your help. Reading your cancer story, it sounds as though you have had a tough few decades yourself. I wish you all the best Mike. 

  • You and your family have been though a lot…… our mindset has always been that there is always hope until hope runs out…… ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge