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Not long diagnosed, about to have clinic appointment to start chemo, help and tips appreciated

Phoenix_of_chaos
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I was diagnosed with osteosarcoma at age 18, but I had surgery to remove my tumour on the 28th march, before my official diagnosis on 23 April this year. Not long from now, I'll be having my clinic appointment with my new treatment team for my chemotherapy and I'm terrified. I'm an 18 year old autistic person with other mobility issues not related to my cancer and the damage it caused and is still causing. Luckily the damage is only mental and emotional, if you can count that as lucky. My life has been upturned and I've lived in and out of hospital since 28 December last year. A six week stint and then this seven week and ongoing stay post surgery pre chemo. Tips for questions to ask and things to say and look into or who to talk to would be majorly appreciated. Support information for my family as well as me would be brilliant as well. I can see they're struggling as well, if you know you know. 

  • Hello and thank you for your post that has moved to the Ask the Nurses area so we can post a reply to you.

    I am sorry to hear about your situation and I can appreciate that this is a difficult time for you and your family.

    When you do get to the chemo unit you will find that you will be provided with information about the service which will include phone numbers to call if you have any worries, in particular with the side effects of treatment. The nurses there will provide information about each step of being treated such as finding out about the treatment and its side effects and what can be done to make you feel better. I hope you will feel it is a kind and supportive place.

    You also will hopefully have a cancer nurse specialist (CNS) who works with the team that treats and cares for you, you may have or will get their contact details.  This is someone you can contact if you have any concerns and /or questions. They may also refer you to support services in the hospital.

    Because of your age, you are likely to be offered more specific support. I also think that there are likely to be people there that will be aware of autism and the impact that it can have when you are going through cancer treatment. The Teenage Cancer Trust has information about this on their website which you may find helpful to read. They also provide more information, with links to other organisations and other resources. 

    You may wish to have someone with you while you have your treatment and for any subsequent visits. This can be a support but will also help them see what is happening which in turn will help everyone to have a much better understanding of your situation. You and your family may also want to visit a Maggie Centre this is a place within the hospital grounds but away from the main hospital and is somewhere where people affected by cancer can go to get support.  It is not available at all hospitals but you may see that there is one close to where you live.  

    You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care

    Caroline 

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