Hello,
I am new to the group and was diagnosed with anal cancer last month after undergoing several tests which started in April last year. I start treatment on the 20th January, which will be chemo radiation therapy for 5 1/2 weeks at a local hospital.
The cancer is small and has not spread, so that’s good news.
I am 58 years old and mum to a daughter (17) and son (25). Married for 30 years. I am a full time carer to my daughter who was born with a rare condition called CHARGE Syndrome. She has very complex physical, sensory, communication and medical needs. I was diagnosed with pulmonary hypertension in 2016, which is managed with medication.
I have no idea how or if I am going to manage the next few weeks let alone care for my daughter. This is my biggest concern.
Hi Rogers4075 ,
Firstly welcome to the MacMillan Online Community although I’m really sorry to hear of your recent diagnosis.
I also sympathise with your situation regarding your daughter as my eldest daughter also has a disability although she’s quite independent & mainly requires minimal supervision now but I’ve been a carer & it’s not easy. Now is the time to call on the people that support yourself & your daughter, family, friends, outside agencies as along with the physical side effects this treatment brings along with it a lot of fatigue & you’re going to be tired. Do you have access to respite care at all? I only ask this as I have a couple of friends that have children with very complexed needs that access respite care regularly although I do realise these services can be a bit of a postcode lottery!! You will be looking at around 7-8 weeks realistically (including the 5.5 weeks of active treatment) before your body starts healing from the side effects so if your daughter is heavily reliant on you I would suggest trying to access some degree of support for at least this length of time.
As a parent to a child with additional needs I know how difficult it is when a time comes that you have to put yourself first, we care first & always meet our own needs second & when something comes along that means that has to change it’s a real worry. If you don’t have access to help from outside agencies already maybe if you give your local council a ring they will be able to advise you on how to go about getting some support throughout your treatment & recovery, if this fails give the MacMillan helpline a ring as the advisors there might have some ideas.
Sorry I couldn’t be of more help, please let us know how you get on.
Nicola
