My dp has got cancer and I'm terrified for my ds

[macwoozy]

My dp has just been diagnosed with cancer. We don't know yet how far it has advanced until he has further tests, but going by his symptoms we now know he's had it for quite a while. We're both devastated. If its not advanced to lymph nodes then good chance of cure but if its affected his nodes then prognosis not so good. The waiting and not knowing is driving me mad, and I pray that he'll get through this.

So much is going through my mind at the moment, but I can't get past the worry of what will happen to my ds if we're both not around anymore. I have a heart condition which is currently being managed with drugs, but unfortunatly there is a chance that my heart can go into an arrythmia which can lead to sudden death. I don't want to sound melodramatic but this condition is the biggest cause of sudden death for people between 12 - 35. Mortality is estimated at 6% a year, and when you work that out over say 5 years, at least a fifth have died from it. Before I've always had the reassurance that if anything did happen to me then at least my dp, ds's dad will look after ds. But now I'm panic stricken with the thought of my ds being alone.

To make matters worse, my ds has been diagnosed with a high functioning autism, he's a charming intelligent sensitive 5 year old but he does have many difficulties regarding his social skills, and comprehending the intention of others. This often leads to problems forming peer friendships although he triss as best he can. He also has a 50% chance of developing my condition.

So really what I need to know is what happens to children who lose both their parents? Do they automatically go to a childrens home, or fostered, perhaps adopted. I appreciate that all cases are different but I can't get my head out of imaging my ds in a noisy childrens home which would be his worst nightmare. Going from foster home to foster home would be equally as painful for him because the constant upheaval would leave him incredibly stressed. His autism would make this unbearable for him.

On the other hand it could all turn out great. My dp could get over this, I might live to a good old age, and we'd all be happy but I just feel I need to make some arrangements, but how the hell can I do that when I don't know if or when this will happen. It could be a few years down the road, but I just can't sit back, and just hope that it will all be alright. I am a constant worrier. Unfortunatley both sides of our family would be unable to bring him into their home, and what potential adoptive parent would take on an HFA, who has the possibility of a heart condition.

Where do I go from here, does anyone have any experience of childrens homes/adoption/fostering? Sorry if this all sounds abit too much, but my dp doesn't want me to tell others about his illness until he knows what the prognosis is, and also because of where the cancer is. So I've had no one to talk to.

[trace2]

so sorry to here about all yor problems,dont know about any of the things you mentioned, but hpoe all goes well for you all hug to you all and theres lots of nice pepole who would take your ds on if things came to the worst, i for one would
thing of you**

[elsmommy]

[whymummy]

i'm so sorry macwoozy and i really hope your dp's cancer is treatable,i know is impossible for you not to worry but try and take one day at a time,good luck
x

[dawnie1]

I really hope and pray that you will all be fine. I can't answer any of your questions or give you any advice becasue I really do not know.

I'll be thinking and hoping for you.

x

[Marina]

Oh macwoozy, you have so much to deal with at the moment, I am really so very sorry to read your post.
If at all possible you need to look at all the issues worrying you, one at a time.
Firstly, you can talk your worries through anonymously with the wonderful people at BACUP . The shock of a diagnosis, the lack of a concrete prognosis, the awful worry about your children's wellbeing, all of this will not be news to their Helpline, staffed by specialist nurses.
Talking to BACUP will hopefully not betray your dh's wish to keep things private - you have to have an outlet too, Macwoozy, to stay strong for him.
Secondly, your concerns about where your children might live should the worst happen to you both. You say family cannot help. That's not that uncommon - all our family are either unable or manifestly unsuitable. You need to think about approaching good friends or other people you trust to see if they would be willing to act as your children's guardians. Note that this does not necessarily mean sending the children to live with them, that would have to be discussed. But it could be that something would be worked out. I can think of several friends whose children I would be willing to take on if both parents were to die - a major commitment, of course, but I'd still do it. You may have friends whose willingness to help, once they are aware of the situation, might surprise you.
We have appointed guardians in our wills and made the appropriate financial arrangements.
And if adoption did turn out to be the appropriate route, then again, you might be surprised. There are lots of fabulous people out there for whom a HFA child would not be an issue - I know people who recently took on two little boys with a whole raft of health and SN issues (behavioural rather than ASD) and have given them a loving, stable home.
Your son's health issues clearly concern you especially, have you thought of talking to his paediatrician about your worries?
I am so hoping for you that the cancer diagnosis is a limited one with no spread and an excellent prognosis.
I have no experience of cancer in my immediate family but there are two Mumsnetters to my knowledge who do - both their dhs live with cancer and have had such worrying times - both men are very much well at present. I hope one or both of them sees your post and can help you from a perspective of real understanding.
lots of love and sympathy at this worrying time.
Marina Moderator XXX

[Sponge]

You poor thing. Really sorry to hear about your problems.
I think the first thing to do is sit down with dp and decide who you would ideally like to look after ds if the worst were to happen. Do either of you have parents, siblings or close friends who you would prefer him to be with.
If there is someone then you need to make a will and designate that person (people) his guardian(s) and be explicit about your wishes for him (after discussing it with the person concerned obviously).
Children are only taken into care, then fostered or adopted if there's no-one else.
I hope it all works out for the best for you.

[zebraZ]

See a soliciter & make a will ASAP. And talk to social services about the options, do you have any friends who would be willing to take your DS in, act as his guardians? You can name specific person/persons as your preferred guardians for your son in your will (the courts aren't bound by these choices, but would try to take your wishes into account in rewarding custody).

Long term foster care does happen and would be the goal for a child like yours, if adoptive parents couldn't be found. Short term foster care is normally for children whose parents are still alive & there is hope that the family might be re-united. People really do choose to adopt children/babies with health problems. Eg., A local couple adopted 2 sons with Down's Syndrome (this is in addition to 3 natural children of their own, and another NT adopted child). One of my cousins adopted 2 little boys when they were 6m & 18m, although the older boy has lots of behavioral problems due to early child abuse, which is the reason my cousin started informally fostering the boys in the first place.

My SIL had twins resulting from rape... the twins (now about 16) have been raised with the same foster carers since they were babies or toddlers.

[macwoozy]

Thank you for your advice. I really need this, but I do understand my questions are very hard to answer. I appreciate the help already recieved.

I've racked my brains with the possibility of family and friends bringing up my ds, but apart from dp's sister who has 2 other children, she has never even accepted my ds's diagnosis of autism, there really is no one else, and she's very strict with her own children. My oldest and best friend is 36 and childless, and she has had too many problems of her own to even think about the enormity of taking on my ds. This is really the problem , I really cannot even think of a possible guardian in the first place. I wouldn't even dream of loading this responsibility to my brother of bringing up my ds, but I would be alot happier if I knew he had control and say so of where my ds could live, then appointing him guradian in that context will be a little more comforting.

I will contact BACUP, thanks for that link, although at the moment I don't feel I am capable of discussing this without blubbering down the phone. But it didn't even occur to me that they could possibly advise me in this situation.

I have an appointment with ds's paeditricain next month so I will discuss this with him too.

[potty1]

Macwoozy - so sorry to hear your news I know you've had the heart thing to deal with and can understand why this latest news has started you worrying about the future.

I agree about making a will and sorting out a guardian is the way to go - at least to give you a bit of piece of mind. It's so hard to think of one person who you can place this trust in but they need not be the person who actually cares for your child, just someone you can trust to do the best for them.

Hope you and your dp are getting some support.

[marmar]

thinking of you at such a hard time prayers and thought go out to you and your family i sort off understand whot you must feel and how scared you are if you want to talk any time hot mail is [email protected]

[happymerryberries]

Macwoozy, so sorry to hear your news

Can I be terribly rude and ask what sort of cancer?

The reason I ask is that some have excellent survival rates nowerdays. Dh had testicular cancer over 10 years ago and is quite clear of that (Has a form of leukemia now, but that is different thing!)

I do sympathise, if it helps I panic like a mad thing when dh come up to his tests (one next week). What you are feelong is noral and you mustnt beat yourself up about it. You need to get the help that you need. Let me know if I can be of further help

Hugs

[misdee]

macwoozy i'm sorry to hear about all this. i dont nkow if it will help as i dont know your heart condition, but would a pace-maker or ICD be of any help to you? could u speak to a doc about it?

[Jimjams]

I can understand your fear. An understanding is so important in HFA. Do you think your sister would understand if she looked after your ds a bit now. I would be terrified for ds1 if we didn't have my mother around as back up.

How about meeting with SS and asking about a care assessment. If your dp has cancer, you have a heart condition and your ds has hfa I think they shoould provide something now.

Fingers crossed for your dp. Your heart condition sounds scary- is there anything that can be done?

[macwoozy]

Thanks to all who have posted, and thank you dinosaur for thinking of me. I recognise many of you have problems yourselves. I was abit concerned that this all might have sounded abit far fetched when I read it back to myself, but it hasn't all happened at once, I was diagnosed with heart problems 15 years ago, ds with ASD 2 years ago, and dp with cancer not even a week.

happymerryberries, I really hope all goes well next week for your dh, what a worry. This is what's driving me frantic, the worry of it all. The reason why my dp doesn't want me to tell friends and family just yet is because he's got penile cancer, what a nightmare for any man. I can't imagine what's going through his head at the moment, he isn't one to show his emotions very well at the best of times. It's very rare and this type of cancer does have a tendency to spread, and we now know that he's had it for at least 6 months already. I'm furious with him that he hid the symptoms from me for that long but I do understand why he did so. We've got an appointment on Tuesday with his consultant so we should get more answers then. Currently I'm getting all my facts from the internet.

Misdee, sorry to hear about Peter, I always read your posts, and admire your strength. I have hypertrophic cardiomyopathy, and an ICD has been discussed but its a little complicated. I'm on amiodarone which reduces chance of SD, but doesn't prevent it all together. I was put on this when found by holter that I had numerous arrythmias throughout the day, they warned that although ICD has a better outcome than drugs, in my case it will discharge many times through the day, and this can be very uncomfortable indeed. As ICD was considered I had an EP study, but on that day they couldn't induce any arrythmias at all so they want to keep me on Amiodarone for time being. I'm not happy with this, but I can't argue with it. Does Peter find ICD painful?

God, here I go again, on and on.

Jimjams, my heart condition doesn't debilitate me but I have thought of contacting SS, especially when my dp will have treatment, I need un understanding person to look after ds. I'm not sure if we would qualify but I could do with the extra help.

So just got to wait now, and hope to god its curable. Sorry for writing so much, once I start there's no stopping me.

[Marina]

Oh macwoozy, I am sorry to hear of the nature of your dh's cancer, no wonder he is so distressed and anxious to keep it private. HMB was one of the people I was thinking of in my first post, I am so glad you spotted this thread HMB.
Wishing you all the very best for that appointment next week and hoping that your worries turn out to be minimised then.
And yours too HMB. Hope that check-up continues the trend of all being well.

[misdee]

Having the ICD fitted was to use dh word, 'a nightmare' but that was due to the size of his heart and having problems fitting the wires. He was having irregular rythms, generally at the same time of morning each day. they picked it up whern he was hooked to monitors on his 2nd stay i think it was, at harefield. he does feel a bit tender at times, and i swear i have seen it go off, as he was completely still one morning, his left sholder jerked, and then i could see his heart beating hard through his chest (he has a very visable heartbeat again due to the size of his heart). it also paces his heart at a faster pace than what was normal for him. it'll only go off when the rhytm is irregular fior a while. it will pick up each irrulagality, but not go off each time if the irregularity is too short.

[noddyholder]

macwoozy I am so sorry I too have HCM if you want to talk or ask anything I am at tlj3dotlewisatvirgindotnet I am currently on disopyramide and it has been v helpful There is a risk of sudden death with many cardiomyopathies but lots of people live a long healthy life esp those who have a diagnososis and are on treatment hth

[macwoozy]

Thank you. I remember reading a previous post when you discussed your circumstances, and I'm always interested how others with HCM are coping. Thanks for your offer for me to contact you, I might just well do that.

[misdee]

i always thinkl HCM must be worse than DCM. but they are both nasty things to have.

{{{{{{{hugs}}}}}}}}

[noddyholder]

I did want to ask you about something else relating to your dh as I had a vulval carcinoma in 2001 cause by a combination of my transplant meds and it is v similar to what your dh has I had an initial excision followed by something more radical and then a brilliant reconstruction The malignancy was confined to the upper layers and so in doctors terms they got it although I have had a couple of tiny patches of skin removed since which were abnormal but not cancerous My dp and I were in shock for weeks but somehow got through it I have never discussed this on here out of embaressment really but when I saw your post I had to.There is a cream called imiquimod which is very successful in treating this condition too and is probably what I will have if it ever recurs which I pray it doesn't Try to make a list of questions out for the consultant as dp and I just sat there crying and had to go back 2 days later to get the full story xx

[Pixiefish]

Nothing to add to what the others have said- but I couldn't read this and not post. It's any parents worst nightmare but i appreciate that you have had to think about it more. There are wonderful people who would foster and care for your son if you were unable... anyway- just hope there's no need to think of this and your dp is ok and you're ok - love and hugs

[macwoozy]

Oh dear noddyholder, you stay so positive and yet so much has been thrown at you. I understand why you might not want to have discussed this before but it is reassuring to hear how you've got through this all, IYSWIM. I will arm myself with lots of questions as I know my dp won't ask anything.

[happymerryberries]

One think that I have come to know about cancer is once you have a case in the family people will start to flood out and tell you all the good news stories. Over the years I have heared lots and now i suppose that my dh is one of them.

One of the oldest lines about cancer is that it is a word not a sentence. So many people are now living long, fullfiled lived having had cancer. And the stats are getting better every day.

Having a cancer 'down there' just adds to the confusion and worry , doesn't it. With dh it was the testicle. When dh first told my father i thought that dad would have a fit, being a shy man the word testicle wasn't one that gotsaid a lot in our house

Re looking for fact on the internet, I do that too, and it is a blessing and a curse. One caution I would give you is that remember all of the statistics are now out of date. Do if you read that mean survival times are, say 3 year, that is already three years out of date. And in cancer time means better treatments.

All of this is not to be a pollyanna. I'm bricking it myself about dh's next check up!

But one thing I do know. You dh will be younger than many people, younger is nowmally much better re survival. He has a wife and family that love him, and having things to live for is better re survival. And we now have better treatments than ever before.....there was an article about it in the Times only this Sunday.

This is a shitty time for you, I know I'm there too. I'm sending you al the best hugs I can, and if I can help, give me a shout.

PS there is great aricle published by a genetics expert Peter Medwar. He was given a life expectancy of 8 months, and lived for over 20 years. For many people cancer is a word, not a sentence.