Need to talk?

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S.tearle's picture
S.tearle
Need to talk?

Need to talk to someone who has been through it all?
My toddler is now an oncology outpatient after finishing treatment may 2012.
I am a full time carer to her and know hard it can be for parents dealing with it all.
Nurses and doctors can be great to talk to but have there jobs to do so can be very busy, so who better to talk to than someone who has experienced what your going through.
I want to offer reasurance and any other helpful info to other parents. I may just be a mother but i found talking to other parents on the ward very helpful.

meggi's picture
meggi

My elder son died last November - of Hodgkin's Lymphoma. No chance of treatment. Just one month between diagnosis and death.

S.tearle's picture
S.tearle

That's terrible. When my daughter was first diagnosed we didn't know if she was going to survive or not

helen.thomas's picture
helen.thomas
Hi Meggi I'm very sorry to read your post. We do have some resources here that may help http://www.clicsargent.org.uk/content/bereavement and you can contact your CLIC Sargent Social Worker for further support. Kind regards Helen (admin)
meggi's picture
meggi

What resources are they? All I've been given so far are the usual useless numbers, such as, 'Compassionate Friends,' 'Samaritans,' 'CRUSE,' etc. None of them are of use. I'm a disabled, non-driver and all the meeting venues are miles away from my home. How does that help.....?

meggi's picture
meggi

None of these contact suggestions help. I am disabled and can't travel , not being a driver. I need to be able to simply chat. Too much to ask.....? Seems so.

meggi's picture
meggi

Why is it that the death of a young child is held as so much more important than that of an adult child? No matter the age of the child, the death rips the heart out of the parents. But we're left without support. Our son was an adult. Somehow, it seems that his death wasn't expected to be as painful as it would have been had he been a toddler.

helen.thomas's picture
helen.thomas
Hi Meggi. Though CLIC Sargent only supports children with cancer up to the age of 25 and their families, do have a look at the resources on our website using this link http://www.clicsargent.org.uk/content/understanding-your-grief as they included videos which you may find useful. The videos include parents, though they had younger children, you may find their experiences help you deal with the devastating loss of your son. We'd also recommend you contact Macmillan, who help adults with cancer and their families. Here's a link to their website http://www.macmillan.org.uk/Home.aspx Wishing you all the best from CLIC Sargent.
meggi's picture
meggi

Not much use to me if cut-off for death of child is 25. And I've contacted all agencies you mention. No use to me because all too far away from home to be accessed without transport - which I don't have.

MacMillan are no longer available online. I used to be able to get into their chat rooms, but the site has been problematic for weeks. Contact with moderators results in lots of technical advice that I don't understand!

meggi's picture
meggi

I despair!
There is NO help for people such as my daughter-in-law & myself.

Always, it comes down to whether we can travel to meetings - so far away from were both of us live!

We're angry. I mean; we're bombarded with advice about getting this symptom/that symptom checked by a GP- because early diagnosis saves lives......HAH!

It's all so much advertising puff in the end.

My son consulted GPs time after time- and his symptoms were passed off as insignificant. Until he was rushed into an ED - and died of his cancer exactly a month later!
Bereavement support in our county is woefully scarce. There is no group support - unless one is able to travel miles to attend a meeting. Well, we CAN'T travel! We neither of us are drivers. Bus services are pathetic - and we can't afford to pay £20 to use taxis.

CRUSE, Compassionate Friends -all the usual agencies. No way can we access any of them!

Yvonne's picture
Yvonne

My daughter was born with an aggressive sarcoma, at 7 weeks she had surgery to remove the lump from the side of her face and then had 7months of chemotherapy. The disease had spread to her bone marrow. She is now in remission since Christmas but it's now that I feel more scared about the situation.
I am just terrified it will come back.
Did you feel that way?

S.tearle's picture
S.tearle

I am very much terrified my daughters cancer will come back.
I don't want her to go through it all again, I don't know how I will cope either. It's took me a year of Tia being in remission to finally decide I can't protect her and be with her 24/7 and that I know i need to focus on my career as she starts school January

You can't let that fear control your life

Laura's picture
Laura

My daughter was diagnosed with Translocated RCC, a very rare form of kidney cancer, she had a full nephrectomy in Jan and the Cancer came back in November, she has had further surgery which was quite complex but is doing well for now. We were given the heartbreaking choice of if we wanted her to have chemo or not it was not something i felt remotely qualified to make and now even after we chose not to take the therapy as there is no measurable disease and they could give us not information on the side effects for her other kidney. I have never felt so alone, support groups and speaking to those around me dont seem to help, as a mum i dont think anyone around me understands. Every day is a constant worry, every ache and pain she has i panic. Life will never be the same again and pretending to be fine all the time is exhausting. I dont say these things out loud as i think everyone expects me to to be happy. I imagine many of us feel the same.

S.tearle's picture
S.tearle

Hi Laura,

Nearly all of my friends don't understand life will never be the same. They just see my daughter as all better. I agree pretending to be happy all the time is exhausting. I also panic each time my daughter says she's poorly. Those around you haven't seen first hand what goes on. I have lost contact with many people as they didn't understand why I couldn't come for a night out or catch up when I was not in hospital. Unfortunately my daughter had 24/7 care for 7 months, at hospital and at home I was the one having sleepless nights. To go through so much with a child is unbelievably hard and the only person I can connect with about it is my partner, unless you go through it yourself then there's no way someone can understand what you've/ we've been through

meggi's picture
meggi

I can't imagine how hard it is to have a young child who is so sick. I don't know how you cope.
My son was 38 when he died of cancer. Only a month after receiveing the diagnosis.
My universe was shattered. And, fourteen months on, I still grieve.

Laura's picture
Laura

I feel all i do is push my partner away, he isnt my daughters father and therefore if he pretends to understand how i feel i just get angry. I have spoken to some other parents with children as the same illness as my daughter and that helped. My child is well at the moment but like most i panic at the sight of even a cough or cold. She is painfully thin which i dont think helps as she looks unwell. I guess with time i may start to relax. It must be even harder with a little one mentally i imagine they cope better as not fully understanding, but physically it must be harder on their poor little bodies. thank you for your words, it helps a little knowing i am not alone in how i am feeling

Laura's picture
Laura

Meggi i am so sorry for your loss, it makes no difference the age, your child is your child forever. xx

meggi's picture
meggi

Thank you, Laura.

I miss my son every single day. It's hard to accept that all I have left of him, apart from my memories, is that tiny plot of earth in the local cemetery. Going there seems unreal. I can't really equate that plot with the child, the man, who lived and occupied so much of my life.
I'll never get used to his absence.

Laura's picture
Laura

It doesn't bare thinking about, when I catch my thoughts going down the what if route I start to lose it so can only imagine what you are going through my thoughts are with you. My work friend lost her 27 year old brother only last week and I'm finding it very hard not to be angry with the word right now. This horrible disease is so unfair

meggi's picture
meggi

Cancer. That's the word, isn't it. We think we're so advanced, but it's still a word that strikes terror.

I'm still bitter that my son's doctors failed to see how ill he really was. That they missed the blindingly obvious. That he had to suffer in his last weeks of life. And his wife had to face the awfulness of his final collapse - on her own.

laurabecca's picture
laurabecca

My so was diagnosed with neuroblastoma recently and I have just hit a brick wall. Cant cope any longer and nobody seems to be able to support me how I would like. Came on here as a last resort but reading the posts is just a bombardment of someone who lost an adult to cancer. I though this site was for children as the situation is completely different. My son is 5 months old and hasnt even had the chance to start living yet. Sort it out please admin as im off now and wont be back. Very disappointed

helen.thomas's picture
helen.thomas
Hi Meggi I am very sorry about the loss of your son. I know we've chatted about this before, but I'm wondering if you may find it more helpful to visit a forum that is more tailored to your specific circumstances? At CLIC Sargent, we support children and young people from birth to 24, and this community is for the families of those children and young people. Please try the online community at Macmillan, http://community.macmillan.org.uk/, or if you are in need of immediate support try Cruse Bereavement Care http://www.cruse.org.uk/. Cruse Bereavement Care will support you after the death of someone close. You can call them on 0844 477 9400. I would politely ask that you visit these websites as an alternative to this forum, which is not the most suitable for your needs. Kind regards Helen (Admin)
helen.thomas's picture
helen.thomas
Hi laurabecca I'm very sorry to read of your circumstances, and that you have not found the forum to offer the support you need. I have emailed you directly regarding this. Kind regards Helen (admin)
meggi's picture
meggi

I don't mean to appear difficult. But, you see, I did TRY such organisations as MacMillan Cancer. Tried them for support when my son was diagnosed.
They got everything WRONG! They thought that I was going to be my son's carer and gave me advice relating to that. Which was not at all what I'd asked for!

When my son died - so suddenly - I got into the MacMillan online community. And found only rejection. All the people there seemed to be concerned with were those members who were actually going through cancer treatment. No time for anyone who'd just been bereaved.
In fact, I was bonced from the site - based on my comments shortly after my son's death. Certain people thought I was being too depressive......

CRUSE......? Doesn't exist anywhere near where I live. And since I'm of limited mobility and don't drive, that support has never been an option.

I've never found any support in my grief. As a consequence, my marriage is falling apart and I've become alienated from my younger son.

Laura's picture
Laura

Meggi
I do not share the view that it hurts any less to lose your adult child than it does to lose an infant and was saddened by the suggestion. I think the problems you will come up against are that people who are fighting to save their children, siblings, partners try not to think the worst. I know from personal experiance I cannot allow myself to think of losing my daughter so being faced with the realisation on paper makes certain people not want to talk to you, no excuse for rudeness. I definately believe there are organisations which specialise in bereavement and your anger is not only justified but a normal part of any grieving process. If you are not getting the support from your gp you should speak to another doctor in the practice. They should be able to arrange home counselling. I would not let 1 bad experiance with macmillan put you off as they have helped so many people. I have found a website on facebook of all places where all the parents of children have the same rare cancer my daughter has an have to say it has been the best therapy and support I have found so think it really pays to speak to people in the same situation as yourself. Hope you find the help you need soon.

helen.thomas's picture
helen.thomas
Hi Meggi, I am sorry to hear that you feel you have not found the support you need. I have spoken briefly to a colleague from our services team about where you may be able to access support and we know that other parents have accessed support from the Child Death Helpline - http://www.childdeathhelpline.org.uk/services.htm or you can call them on 0800 282 986. The Child Death Helpline supports parents with the death of an adult child and their website says 'We offer a confidential, safe environment within which a caller can talk openly about the child’s life and death. Callers are given the opportunity to freely express their worries and emotions. We provide support not only at times of crisis but also for the ongoing needs of callers over their lifetime.' I hope we've been able to help you. We’re sorry that CLIC Sargent isn't able to extend this forum to the parents of adult children. If you do continue to post here please ensure it is within the remit of this forum, otherwise we regret that we won't be able to accept future posts from you. Kind regards Helen (admin)
meggi's picture
meggi

I'm grateful for your input, Helen.

I didn't realise that this forum is limited to the bereaved parents of infant children. Had I understood so, I wouldn't have signed up.

Thanks for your advice. But, no matter which way I turn in my grief, I meet a brick wall.

No counselling available anywhere near my home.

I just seem to be alone with my grief......

Anyway, since this forum can't be of help to me, I'll cease bothering you.

I'll think of you all.

mummy122's picture
mummy122

hi i dont know where to start my daughter is now 18 months in remission from Hodgkins Lymphoma stage 2A. she had a trial chemo at the royal marsden and really did bounce through it. When i was told that it was cancer i went numb and feel i was like that until i heard the word remission then it seemed to hit me i am now a nervous wreck. i told her father the day i was told and he has not been to see her once.since i have decided now he has no rights,my mother also never saw us so i no longer speak to her they should of been the people to help me i am completly on my own i live in kent so it was 4 hours traveling every day then 4 /5 hours in the hospital. i didnt meet other parents because she coped really well and had not a single over night stay all of my so called friends disappeared i had one friend who sat my 9 year old for me and sorted school as i got in in the evening she left asap so to be back at 7 the next day and a friend who is carer to her elderly mother who phoned me regular i didnt realise that clic sargent had a page like this i thought they just helped out with the first shock and then leaflets so i was left with the macmillan site which are no help if you cant talk on the phone my nearest meeting i found was at least an hour from my home.i have now got so bad i really cant open my door unless the person outside calls who they are. it is so bad my friend also realised just last week that the DHSS still think i receive DLA and Carers allowance so from august last year i have been at least 30 pound a week down on my money i am really in a bad place and in debt really bad i am scared to approach DHSS because because they might blame me for not telling them i dont recieve Carers allowance but i thought that as the other 2 benefits stopped without me having to tell them,then they had also sorted out my income support.i know i have struggled badly moneywise my most common saying is im broke, my teen dosent want to hear that all the time he started college as my money cut so i also have to pay bus passes and lunches out for him ,i dont know how i can sort things out because i really cant talk to people without panicing i cant even see my doctor for myself,i dont think any of us have visited the surgery since diagnoses. we have not been sick. i go to the Marsden for check ups as they are needed. am i completly losing it or does anyone have at least some of my anxiaties. i just want to be as happy as i should be that my girl is doing so well as she is and try to believe that it really isnt coming back.any advice please but dont tell me im a nut nut i will believe you xx sorry it is so long but it been bottled up for 2 years

mummy122's picture
mummy122

hi i have my false smile on now as the girls are awake i also was wondering if parent noticed their childs sleeping pattern go out the window after their treatment ended my girl really dosent sleep before 11 nearly every night she just dont seem to be tired. i am very lucky if she has 7 hours a night i have told our doc at the hospital she suggested lots of running activities maybe after school she dont nap and dont sit down very much im always saying sit down or stop bounceing i just wondered if it was a side affect or if it is just my little girl.finally being herself because she was quite active before her illness thanks x

Laura's picture
Laura

Hi Mummy122
I am sorry to hear of your story, you will see mine above in the early stories. Story 13.
First of all I think it is fair to say no-one will ever judge you or think you crazy, we have have horrific experiences and our
minds are all in over drive all the time. People should not judge till they have walked even a few steps in your shoes.
I am so shocked by the lack of support you have had from your friends and in particular your family. I have been quite lucky on that front
But my daughter herself did lose some friends which was very hard for her to cope with on top of everything else.
My daughter had two surgeries to remove her cancer, we did not opt to take chemo and as such there was a lot less support options for us, I
Understand why but the emotional stress we went through was worse than a lot of the physical recovery.
Clic Sargent appointed us a social worker and they will do home visits so there is hands on support and someone to talk to when you feel you are going
A bit mad, it was good to have some reassurance that you are not the only one feeling this way. I also came across a site on facebook set up by a mother who’s son had the same rare disease as my daughter and we have come together to share stories its been a great and speaking to people in the same situation with the same worries really does make a difference.
The hard part for me is how you are meant to just get on with things now as if life is normal, I am every 8 weeks for scan and two week after for results, constantly stressed and not sure how life is meant to be normal, painting on a smile and pretending has become 2nd nature now. What else can we do but keep going and be there for our children. Clic Sargent also offer support and advise on the financial side of things so I think it would definitely be worth speaking to them about your situation.
Laura

mummy122's picture
mummy122

thank you laura i feel ok today i have good days and bad thankfully more good than bad now and the other day was a really bad one. i just think life is so unfair sometimes and as im on my own i cant even scream about it. so i found this page then put it all in that post it didnt change anything but i felt better just having a rant it just felt good getting it out of my head for a while. i know it will all build up again but hey i will have another rant. it seems that because my girl is so far doing so well everyone i know has forgotten but it is still right at the front of my fears i have terrible nightmares about the future guess i always will, she is 7 now we have the constant worry of relaspe or god forbid a different cancer trying its luck. then fertility probs maybe because of chemo and so so many other hurdles that other parents may never have to even concider. my girl has not just had a bad cold she had one of the scariest diseases i know.i do just panic.i have done a couple of things inmy daughter remission myself and my 2 girls raised nearly 500 pound doing the race for life last year, and we are doing it again this year. also we were bucketeers for clic sargent in nov last year and raised nearly 500 pound for them. we shook a money pot for Marie currie as well but didnt make quite as much but these things took our minds of our problems for a while and gave us a chance to give something back.but we still have to wake up with our fears i just hope it gets easier and have to belive we have beat it together. i hope your little girl is doing well and thank you for your reply it helped me to know im not alone and it is ok to feel down now and again xx

Walter D. Clarke's picture
Walter D. Clarke

Hi , S.tearle. i am almost cry over your post. may God help you in these circumstances. hope you and your husband spending maximum time with your kid/

http://tinyurl.com/ot4zzvz

gillybeaver's picture
gillybeaver

I lost my child on the 7 may . Her funeral is 28 may this Thursday she was 24 x

gillybeaver's picture
gillybeaver

Sorry April not may