Helllo to everybody.
I have finally found my way to the carers forum and I know that everybody who is here will also be on their very difficult journey caring for a loved one with cancer and I wish you all the very best with your own journey.
My daughter was diagnosed on May 13th with acute lymphoblastic leukaemia. She is on a teenage cancer trust unit and will be there for a minimum of 6 weeks but it could be 3 months depending on how her induction block of chemo goes and her bone marrow results after the induction block to see if she is responding to the chemotherapy and is in a remission or not.
I am posting on here in the hope that it can help somebody else in the future who find themselves in a similar position. The type of leukaemia she has is rare only 790 cases are diagnosed each year in the UK which means not many people know much about this type of blood cancer.
I had never heard of it and it has taken me the past week to come to terms with my daughter having cancer, even saying it out loud it still doesn't seem real even though she is now on her fourth day of chemotherapy and is already having side effects from the intensive treatment I look at her and still cannot believe it is my daughter in the hospital bed.
Acute lymphoblastic leukaemia is very aggressive like all blood cancers so her treatment has to be equally aggressive. She is being treated with the paediatric protocol as it offers her the best chance as it is the most intensive and her consultant believes she is young enough and strong enough to cope with it.
I have deliberately not researched survival rates for this but it hasn't stopped every family member and friend turning to Google even though I told them not to and they are scaring themselves. Her consultant says she has a good chance given her age and he believes she will respond well to treatment as long as it hasn't spread to her brain yet and as long as other factors go in her favour.
I find I am dreading every test result, beginning to dread her haemoglobin and platelet count each day and she is currently have bloods and platelets transfused every second day. She fainted in the bathroom the other day and my mind went to the cancer is getting worse even though I know chemo will also have the same effect and will be lowering her red blood cells so it doesn't necessarily mean the cancer is getting more aggressive.
My daughter is feeling very drained, she doesn't have much of an appetite and is forcing herself to eat despite how sore her mouth has become and the mouthwash they have given her isn't helping much yet.
I keep thinking we are only on day 4 and she already feels as bad as this, what on earth will she feel like in a weeks time when all of her hair has fallen out, I don't know how best to comfort her and I am trying not to fuss over her too much as she is a very independent young woman and has already left home so the thought of her having to give up her rented flat and move back home must feel like regression to her, even if it is only going to be for the duration of her chemo for the next year. She feels cross at times which the consultant warned us would happen due to the steroids and the last thing I want to happen is for her to be upset during treatment but I realised yesterday that just because she has cancer, other emotions don't suddenly switch off, she will get angry, sad and all other manner of emotions and all I can do is try to help her through them and be there for her to shout at if she needs to vent.
I know this is going to be a very hard journey for my daughter, myself and her dad and her three sisters and our extended family and I know there are going to be many ups and downs along the way and I just have to have faith that eventually she will get through this and be able to have her life back on track but I also have this fear inside of me that I might lose her and I think it is making me try to hold onto her even harder which I know I need to work on so she doesn't feel suffocated.
Has anybody else had the experience of caring for their young adult child? Or has anybody else had the experience of caring for somebody with blood cancer? I would be very interested in hearing your stories.
Much love to everybody and sending virtual hugs to all the carers out there. x x x x
