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hanging in there, holding it all together....

13 replies

isobelle · 16/05/2012 12:53

My mother has been diagnosed with cancer and I am finding it desperately hard to take this news on board and remain strong for her first and foremost and the family with four very small children. I am not sure whether I have posted in the right place but do so in hope that others who have been through this may have some support or guidance in which I would much appreciate.

I really am not an emotional person but have found this unbearable and can't stop crying (not in front of the children yet!). I am trying to be strong but its difficult and I am all over the place. I can't talk about this (verbally) its so raw and thus helplines wouldn't help at this stage...

OP posts:
PipPipPip · 16/05/2012 13:50

I haven't been in that situation so can't offer any guidance, just a virtual hug x x

Mayamama · 16/05/2012 14:47

Hi,
I've been there. My mum was diagnosed with cancer right before I had my first (alhtough she told me a bit later, when DS was a few weeks old, to save me from that desperation whilst still expecting). She entered the final stages of her life soon after I had my second. It is very, very hard. I will come back, if you do not mind (gotta fetch DS from school), but all I wanted to say now was to let yourself cry. I held it back, and only cried (every day for at least a month, and still secretly) after she died. I wish i would have allowed myself the feelings earlier...it helps. If you have someone on whose shoulder to cry, it helps even more.
Hugs to you and try to hang in there,
M

Bella30 · 16/05/2012 17:02

Isobelle I'm so sorry. It's so hard. I remember clearly where I was when I found out my Mum had cancer. And crying is absolutely OK - it is terrifying and heartbreaking when someone you love is diagnosed. Despite everything I'm sure you will be able to support your Mum. And hopefully you don't have to hold everything together in front of her all the time - we found we could share the fear/sadness to some extent, although we all did our best to be strong and positive too.

Today is my Mum's birthday - she died last year just before I found out I was pregnant with my daughter - 10 weeks on Friday and dozing in her bouncy chair beside me. Today I'm remembering my Mum who was an incredible,strong woman who should have had much more time with us all. I'm still crying, I still think it unbelievably unfair that she died. I'm not sure when those feelings will go away, but I'm sure they're absolutely natural, and you are not alone in feeling as you are.

Sending you hugs and wishing you, your Mum and the rest of your family all the best.

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isobelle · 16/05/2012 19:47

may and bella, i cant tell you how much your words mean to me, i know we aren't the first and wont be the last but it really hurts so much to see someone you love trying to be strong and knowing whats ahead. my worst thing is the guilt when shes been looking after us, whos been looking after her? of course we have but with small children it is hard to see things clearly and life intervenes with the daily distractions and this so painful. can you tell me how your mum was affected by the treatment and how you managed to cope - thank-you enormously

OP posts:
Mayamama · 17/05/2012 12:38

Dear Isobelle,
and once again, I do feel for you at this most difficult stage - the unknown. I remember also that guilt was what really got me. It still does, actually...But I have felt - yes, rather than think - my mum would not have wanted me to be razed to the ground by guilt, never. She was never that type of a person. So I now try to think about the whole thing differently, and perhaps more the way that she may have thought.
I had such a tiny baby on me at the beginning of it that I really could not be there for her as much as I would have wanted. If you can, try going to the doctors with her (of course, if she wants you to). It really depends on her personality, some people may benefit more from it. But sitting in the waiting room with her might help. Also thinking with her about the options (surgery, chemo, radiotherapy, other drugs, etc) may be beneficial. I found Cancer Profilers helpful - those are free online tools where you fill a rather detailed questionnaire (usually the diagnosis sheets are helpful to do it properly) and it gives you the medical protocol most doctors apply to the cancer cases. It might help you, if you are the kind of person who wants to know and be prepared when facing such challenges. I am, but I realise for some people, this is not at all necessary - after all, nowadays most doctors are well trained in communication skills and should be able to both explain, answer questions and even negotiate. I remember also finding it helpful to talk to my mum after her surgery and during her chemo (she did not really have much side effects at the time) about how to help her body cope by healthy eating, and generally healthy ways to live right then and there.

One thing I would do differently now is to pay attention to other problems. Cancers are very often curable. In fact, in her case, it was not the cancer that got her. It was (probably) the long term side effects of her chemotherapy and subsequent medication. I would be much more vigilant also to what the doctors prescribe.She developed cardiovascular problems probably as a result of her cancer drugs (check the side-effects!). I now believe those long term drugs were given unnecessarily. It depends on how old you mum is, what type of cancer she has. My mum was over 70 and the particular type of cancer was slow growing. So it was fairly unlikely she would have developed any new growths. But she was afraid, and some doctors made her fears worse. SHe was eventually on such a ridiculous cocktail of drugs that her body was bound to give up.

Those things of course came up later (3 years or so after her surgery and initial chemo). I don't think I coped very well at the time, and I did not even accept my mum's illness was the reason I did not. I just somehow unhooked that from everything else going on in our lives, when it was in fact related. I think I would have been a better daughter and i would have been a better mum to my son had I accepted that this was a very difficult time for all of us, and had I looked for support and help from outside (support groups perhaps...?)... But it is hard to know. Now, I have been able to cope somewhat better. I have allowed myself the feelings, i have faced my own thoughts of death and shortness of life (whilst looking into the face of my 2year old...) It is a heartbreaking stage of life - yet I think I have emerged from it somehow wiser and stronger. i wish I could have done that without having to lose my mum. I read a lot about people's last stages of life -- I found an excellent book that has only been published recently, by Philip Gould. It gave me a different way to look at death and somehow helped me deal with all those painful fears and loss.

Currently, so many cancers are curable (think of the recent discovery that something as simple as aspirin may diminish fatal outcomes of many cancers by about a third!). It is difficult times, but as long as you are both realistic and at the same time do not lose hope, you can come through it. Oh, there are so many things I would like to say about this and share, but perhaps you have more specific questions rather than reading an endlesspost about my experiences. I'm sorry, this was a ridiculously long post. Please let me know if you want to ask anything more specific, or some particular aspects of coping.

Hugs
M

isobelle · 17/05/2012 20:13

Maya and all, I can't tell you how much your words mean to me, I don't know anyone that has experienced this and found it very helpful and offer my thoughts and prayers to you and your families.

I wondered if you could tell me about radiotherapy - she has been told thats the likely treatment, 5 days a week for 6 weeks - she weighs so little and I am scared of the gruelling toll it will take on her. How was this for your mum (if relevant)? Thanks in anticipation (as i write this - i cant believe its true - its something no one wants a loved one to face and this makes it all the more hard to bear) xx

OP posts:
Mayamama · 18/05/2012 10:10

Hey,
my mum did not have any radiotherapy, only chemo, so I'm sorry but cannot offer my own experiences here. Depends really what information you need, the practical stuff is there on NHS or Cancer charities, e.g. Radiotherapy But maybe it is more about the emotional issues - then this might be helpful: Emotional side effects
I do hope this helps or that someone might be able to add insight.
Hugs
M

Bella30 · 18/05/2012 12:52

Hi Isobelle - my Mum had what sounds a very similar treatment programme - radiotherapy over about 6 weeks. It is really gruelling - we found that the effects of the treatment were cumulative, so she was doing pretty well for the first 4 or so weeks (she was already weak from losing weight, but was still having some semblance of 'normal' life over this period). From 5 or 6 weeks and for some time after the treatment, she was very weak and spent long periods of time in bed recovering. This was also partly to do with where the type of cancer she had and the effect it had on her appetite/ability to digest food as she found she could eat very little and this of course also made her very weak and possibly made recovery from the treatment more difficult.

The actual radiotherapy sessions are very short (a few minutes) but of course if your Mum is having to travel any distance to hospital, then it can be a pretty time consuming process too.

My Mum was determined to have something to look forward to after all the treatment and booked us all a weekend away about a month or so after it finished. In the end, she still wasn't that well at that point, but I think it was important for her (and all of us) to have something to mark the end of the treatment, and also to break up the waiting time until you find out how well it's worked.

I hope this is helpful - I'm sure every treatment is different, and each person's reaction to treatment too of course, but there may be some similarities.

Also I don't know whether your Mum is telling lots of people about her situation or wanting to keep it quiet for now. My Mum decided she wanted people to know and I know that the support, love and prayers of her friends and family were a huge help to her (and to us). Our experience would suggest that asking for help/support is really important.

Wishing your Mum and you lots of strength. It's hard, but hopefully the treatment will have the result you all hope for.

xx

isobelle · 18/05/2012 21:26

Thanks again for taking the time to share this info - it helps alot - I am very grateful to you both.

My mum is very petite probably around 7 stone max with possibility of loosing so much weight as the treatment begins - this will have devastating effects on her emotionally and physically - was your mum this kind of weight? I just want to get her to pile on pounds before this but shes little appetite and its painful too then i feel like I am controlling and demeaning her even by encouraging eating. Can I ask how long you had with your mum between diagnosis and passing away?

heartfelt thanks again x

OP posts:
Mayamama · 19/05/2012 15:22

My mum was tiny - very very petite. But her body took the treatment reasonably well (again, chemo is probably different), she did not even lose her hair. They do take size and endurance into account, I am certain, so unless your doctor is advising you that she must put on weight, it might not be necessary -- and I agree, it might be better if you leave her in control. Cancer does make one feel very out of control of one's own life and body, and it can be very depressing.
BTW, treatment is sometimes stopped if one's body responds quickly by considerable weakening, my mum was going to have 6 chemo sessions but they stopped it after 4 (based on her blood tests, she herself did not seem to have felt that poorly). It is also about her health otherwise and many other very specific things. What stage cancer does she have (II, III, IV)? Do they know whether it has spread and where etc?

My mum was diagnosed late 2006 and died last Autumn so it was six years from diagnosis until she passed away - but as I mentioned, she did not die of cancer but of other causes (cardio-vascular), although probably directly related to long-term medicines to keep the potential recurrence at bay.

I do wish you the strength of mind to support her and your family.
Hugs
M

isobelle · 19/05/2012 21:26

Thanks again Maya - for taking the time to respond its , this week has changed our lives (since hearing of the diagnosis) my regrets are that the signs were staring us in the face and I never ever contemplated what they may mean, this hurts although I know we cant change the past and will do whatever is necessary in the present and future (this is the way we were brought up!).

They told us that the cancer was intermediate with some signs of spreading and yet we have to wait four weeks until treatments starts - every day is difficult knowing that time is of essence.

Bella, was weight an issue for your mum, my mum is tiny and I am worried it will take its toll on her. Its unfair that when you have to be at your strongest - you are actually at your weakest.

Thanks x

OP posts:
Bella30 · 21/05/2012 08:13

Hi Isobelle - my Mum wasn't particularly petite - I imagine a pretty average height/weight when she first got ill. However, the treatment didn't start immediately that she had the first symptoms, and because she had pancreatic cancer, her digestive system was affected. So for a couple of months before radiotherapy started she had been eating very little and had lost a lot of weight. She soldiered on, trying to ensure what she did eat was high calorie etc, but I think it was an issue as the treatment went on as she just didn't have the energy to really deal with it, and ended up spending a lot of time in bed afterwards. If your Mum is able to keep eating as well as she can during treatment hopefully it won't have too much of an effect - and I remember my Mum being given dietary advice by the hospital which hopefully your Mum will have access to. It's hard if you feel you are forcing her to eat, but I think you should keep encouraging her to eat well, but also be open to what she actually wants to eat, even if it's not the 'best' food calorie or nutrition wise. Anything is better than nothing.

It must have been such a tough week for you since hearing the diagnosis. As time goes by, it won't necessarily get easier , but I'm sure you will find the strength to cope and support your Mum.

xx

Mayamama · 21/05/2012 10:26

Hey,
I know what you mean about the feeling of losing time whilst waiting for the treatment to begin. Healthy eating is certainly one thing she can do to try spending the time preparing herself. I came across some natural remedies as well which you might want to check out. I cannot say I am a great fan of those in general, but unless they are suggested to have negative effects, might be worthwhile. Two in particular that I would have now suggested my mum would try (instead of gulping down aromatase inhibitors): one was grape seed extract or GSE (you can see what medical research says on them here (basically research suggests that GSE appears to inhibits some cancer growth). The other I read about was graviola fruit, known also as annona muricata or soursop (see here). You might want to ask about this from your doctors, and if you point out that there is research into it, they might tell you whether to try them or not.
Do look after yourself as well whilst looking after everybody else!
Hugs
M

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