A warm welcome to our forum. It's great to hear from a survivor from childhood ALL. I am really sorry to hear though that the treatment has caused late side effects and I hope these are not too debilitating for you. Don't hesitate to talk to your GP about any symptom or side effect that worries you as they may be able to help alleviate these.
You are always welcome to talk about this to our cancer nurses. You can call them on freephone 0808 800 4040 - lines are open Monday to Friday, 9am to 5pm.
I hope that you will also hear from other forum members who are also childhood ALL survivors as it helps to talk to others who have been through this and suffered similar effects after treatment.
Thankyou for your welcome , but yes they are debilitating and have changed my life dramatically and my family’s a lot , I was told that I have toxicity that methrexate and cranial radiation given in 80s can cause toxicity , I suffer from impaired left ventricle function, servere life altering fatigue, bone pains and more , I have been left in shock and struggled to cope with this information I was led to believe a cure was a cure not that several decades later I would start to get ill with no idea what causing it and had to fight to get answers , then to get told there is no cure that the damage can’t be reversed that I well my dna could in fact be 20 30 years older then I am that I have an increased chance of a shorter life span , or get 2nd cancers or even early onset dementia which is linked to cranial radiation , i spent years , years wanting to know more , I’ve had numerous problems with the fact that GP s and other doctors dont understand my health problems this toxicity I’ve had to give them information. I don’t understand why I wasn’t told there could be late effects and why now there are late effect clinics but only for current cured patients, where’s the late effects clinic for people like me from the 80 s who got the treatment s that they won’t give now because of the toxicity where is the support for us the answers for us , I was 5 and I continued to see my consultant all the way through teens and even as a young adult nobody ever mentioned anything about late effects, I had a 2nd cancer scare couple years ago and the advice given to me was because of my past treatment s I should be fast tracked faster for referral but my gp never herd of this and said if I was a drinker or smoker I would been fast tracked it’s just so wrong that there are lots of published documents and even charity’s who have information that people like me who present with cancer symptoms need to be fast tracked but yet the GP s don’t have this information, there needs to be more information given out about the late effects doctors and GPS need to be informed . We should get support and to be given more information.
I have just sent you a friend request so we can chat about your experiences. I had ALL when I was 5 which was back in the 1980s when they were giving our crazy treatments. I was one of the test studies that included Cranial irradiation as a treatment to treat Leukaemia which still scares the living hell out of me that Haematologists thought that you could cure blood cancer by specifically targeting the brain. I actually relapsed after my two years of chemotherapy that went in hand with the radiotherapy and was then treated again with a bone marrow transplant. I can very much relate to your experiences of going to the long term follow up clinics.
I am never someone that likes to speak badly of others but I have become very disillusioned about cancer specialists in general especially those that are working predominantly with children or even adults that have had childhood illnesses. I do not want to go into detail here as it would take up the whole thread but as an adult, I am shocked by the lack of empathy of all of the specialists I have seen. Instead of having humility and showing empathy towards patients they much rather ride on the achievement that they saved your life almost gloating that fact in your face and waving it around like some prize they achieved. But here's the thing, if you save someone's life at the cost that you actually accelerate the ageing process of certain parts of their body then you have completely missed the point that life actually has a quality to it in the first place.
Anyway, it took me a lot of time to really understand everything and it was after reading a book that analyzed what healing really means referencing a lot of work by Carl Jung. The true meaning of curing someone or saving their life means that they are able to return to the same quality of life they had before that illness came about and if you are not able to do that you have failed.
I'm am on the verge of setting up a forum for Childhood cancer survivors as despite being seen by one of the main cancer survivor hubs in London I have never managed to speak to other patients that have been on the same journey as me and I think it would be a great place for people to share their stories and experiences.
Feel free to drop me a message if you would like to talk more.
