Hi I’m under 60 and been told I have a rare form of cancer inoperable tumors in my body been told I have maximum of 4 years

So I was diagnosed in January and basically been told I have a really rare type of tumours that are inoperable , because of where they are in my head , so been having radiotherapy , which has taken its toll I have one week left now , 25 sessions in total , I admit I haven’t beeen the easier person to live with I’ve lost all my hair which has made me really low , but I have had to chase everything like I didn’t know about not having to pay for prescriptions, and that you can get a voucher towards a wig ? That there is a wig bank , basically my radiotherapy team have not told me anything also with meeting with the oncologist she has told me nothing as well when I ask I’m told we can’t tell you anything I don’t know how long I have left with my family ? My partner just keeps saying you’re not the only one going through this which makes me feel guilty for feeling ill or feeling down . Am I being horrid as I’m  lead to believe or does anyone else feel like this ? 

  • Hi Willowy and welcome to the Cancer Chat forum.

    I'm really sorry to hear about the rare brain tumours you have, and that are inoperable. This must have been very difficult to find out but I'm glad you're finally nearing the end of your treatment and I hope you haven't experienced too many side effects from your radiotherapy.

    I'm also sorry about the lack of information and support you have received during this process, and the impact this has had on you and your family. I can't begin to imagine how difficult and stressful it has been for you to chase everything up, and I want to reassure you that you are not being horrid. A cancer diagnosis is difficult for everyone involved and you're doing the best you can to cope with everything that has come your way, so please be kind to yourself as you continue to navigate the many challenges this journey will bring.

    I hope this information we have about living with brain tumours and coping with cancer will help but if you would like to talk any of this through with one of our cancer nurses, you can give them a call on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m. and they will do all they can to support you and address any other worries or concerns you have about your diagnosis and/or treatment at this time.

    We have a section for family, friends and caregivers which your partner may find useful to have a look at as well.

    Hopefully some of our members will be along soon to offer their support and advice, but in the meantime we're thinking of you Willowy and wishing you all the best with your final session of radiotherapy. 

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi Willowy,

    You should have been allocated a named cancer nurse by the hospital to help answer some of these questions. 
    Assuming you live in England, you should also have been referred by your GP to MacMillan for nursing care and benefits advice. If that hadn’t happened, kick off a bit and get that sorted out. 
    Cancer is scary and sometimes the side effects of the treatments feel even worse. None of us are f******g saints and we all quite naturally get down, scared and angry with the s**t we have to put up with as cancer patients. 
    That said, there’s a good reason they won’t tell you how long you have with your family … they genuinely don’t know!

    Survival stats are based on average patients but none of us are average. The stats ignore factors such as age, fitness, whether we have other medical issues (comorbidities), how much we can tolerate our treatments etc. 

    Your partner is right, you’re not the only one going through this. There are thousands of fellow patients available to give you support. If you’re into that sort of thing, there are local support groups across the UK who offer face to face support and hard won advice. If not, I’ve found a lot of practical advice on here - just don’t send me virtual hugs or thoughts and prayers! 

    Good luck!

    Dave