how to cope with ALL

message: Hi Louloo, my heart goes out to you. We have been on this journey for 17 long months now and it does become easier. I would be giving you false hope if I said that the fatigue and worry all goes away, but what I can say is that you settle into a better place as you become more familiar with the treatment and how your son copes with it. Children are amazingly resiliant and do not have the negative experience of cancer that adults do, they just take each moment as it comes. With time you will learn to close certain thoughts away in the back of your mind which will make things more bearable . Another thing is that I too, along with many others I have met, have mourned the loss of my previous self and was quite envious of my husband who could carry on with a more normal life. This feels shallow at the time but it is a normal reaction and a grieving process for the carefree life you had before.
I was signed off work for the first year and also take medication to help with the stress of it all, maybe you could talk to your GP. I also see a macmillan psychologist once a month to chat about my experiences without risk of offending hospital staff or family. Oh yes, I comfort eat BIG time and although not happy about it I realise that there are bigger things to deal with right now.
For about the first year my son was neutropaenic, he is on regimen B. Our local team of medics and CLIC nurse have a more relaxed attitude to neutropaenia and he has been allowed to attend school and generally do things normally, except go to the cinema or other crowded places. This brings it's own concerns and you certainly expose your son to germs but it gives you and your son some social interaction which is important for your sanity! Talk to your medical team and see how isolated you need to be, it may be that you can have people to visit provided that they do not have symptoms of any viral illness such as a cold or chicken pox.
I have met people on the ward that I text frequently and it is great not to have to explain all about our situation or to explain what's going on with the treatment- they understand completely and it will help you to feel more normal. Many times I have laughed with others over silly situations such as being so stressed you cannot answer a simple question- would you like tea or coffee? Not normally difficult, but sometimes you just don't want to make yet another decision. I also went through a phase of losing the car- difficult whan you are used to being completely in control.
Sorry if I sound preachy, but hope you can learn to re-adjust to this phase of your life a little quicker than I did. It's still not easy but I am beginning to pick up some of the threads of my old life. There are still heart wrenching disappointments when my son is not able to do everything that his peer group is doing and as a mother it really hurts to see his disappointment. However, we celebrate the achievements and enjoy those moments. Some of those moments would have passed us by, unnoticed in our previously hectic lives. There is still alot of fun to be had and our lives have been strangely enriched in places, it's not all negative.
I wish you the best of luck on this journey and please find a little bit of time for yourself- you are important too. x

message: Hi LooLoo,
I too felt that i had "lost the plot" for a while when my son was first diagnosed, he doesnt have ALL, but CANCER is CANCER! and the shock of diagnosis really took a huge toll on my sanity! For about a year i actually started to think i was going mad, couldnt hold a proper conversation, forgetting even the simplest thing, when before all this i was a very organised, with it person!!
To be honest im still not back to myself, 23 months on, i havent got the patience i had, i cant put up with people moaning about nothing, and am still very forgetful, which i do find quiet distressing at times, the last month or two, i can feel my old self peeking through sometimes, my poor husband (not my sons dad) has been through hell with me, suffering all sorts of anger/ fear/ hopelessness from me, and always draggin me back to reality!!!
I guess what im trying to say is, i think our children being ill changes us, and we just have to go with the flow!!
As for nuetropenia, my son was constantly under 1 count, but he just carried on as normal, keeping away from anyone we knew was unwell, but really, all the infections he got came his own system, so i would have a talk to your sons doctors and see if you really need to be so isolated as youve become.
Best wishes hun, it does get better, but it does take time too!!
aly

message: Hi LooLoo, Am joining this post a bit late as have only just registered. I really sympathise with you as I have found neutapenia one of the most difficult and depressing aspects of my child's cancer. But my experience for what it is worth is that your child can do more than you might think when neutrapenic. My daughter, 9, was diagnosed with Non Hodgkins Lymphoma in July but is being treated as if she had leukaemia. So she was neutrapenic for most of September as well as nearly all of October. The diagnosis was such a horrible shock that I just wanted to protect her so kept her away from school, most friends, and any fun, really, even though the consultant and nurses' advice was to send her to school if she had neutraphil levels over 0.5. Result: depressed, bored child and cabin-fevered mother. She still got infections anyway, they just came from her own system or from her brother and sister. Now she's not neutrapenic I have been sending her to school-albeit for half days- and to social events and the difference in her is wonderful- a happy, fulfilled child. It has also done me good to get out of the house and have time to myslef for the odd hour or two. I have now resolved that when she is next neutrapenic to be braver. I will take the hospital's advice and send her to school, parties etc if her neutraphils are over 0.5 and as long as she is well and there no measles, chickenpox etc in her class/group. One nurse told me that the children who often do better on my child's treatment are the ones who are allowed to lead as normal life as possible. So my medical team positively encourage her to go out into the world. It's still scary though. Obviously I don't know your son's condition and am not a doc but might it be worth asking your team for a bit more guidance? By the way, I am glad to hear other people have lost the plot! It's very embarrassing but I keep forgetting that I've had conversations- feel like a goldfish, (probably look like one too, all that enforced telly watching on the sofa). The Best of Luck

message: i am 19 years old and my fiance how is also 19 has ALL he has had it hard as he perforated his bowel twice and that nearly killed him and now had atheritus because of all the treatment and osteoporosis in his spine and hips because he has been on treatment for 3 and a half years which means the steroids have effected him alot. He is just a lad and want to be normal he plays on his xbox and im the one who worries all the time! as i said i am 19 and sometimes its like im looking after a baby. He had an infection in his line a few months ago and had to stay in hospital i slept by his bed every night! i am his carer and the only one who looks after him! when we first found out i felt the same way alone and confused and very depressed i kept asking myself "why him" but no matter how many time i asked i never got no answers! We had a friend who got diagnosed with AML and he sadly died last year after he finished treatment which made me worry more even though he has finished now i still am worried about him.

Best of luck
xxx