My Mum and her ongoing battle

My mum was diagnosed with Breat Cancer on 1 October 2005 she was 49. Mum was told it was an agressive form and 4 days later she had a full mascectomy. She has no partner / husband just me and my sister - she has brought me and my sister up on her own since I was 3. 2 weeks later whilst in recovery my nan (her mum) was also diagnosed with cancer. My nan had radiotherapy but was taken into hospital and died 12 weeks later after a long fight in hospital. My mum stayed strong and had chemo followed by radiotherapy whilst grieving for her mum. 4 months after mum stopped radiotherapy and a week before Christmas 2006 she was told her cancer had spread to her liver and she now had secondary cancer. It was devastating and my mum sister and I cried for days but my mum so brave vowed to fight on. So she transferred hospital to the Royal Marsden in London and tried chemo again. My sister and I live in London (my sister is 28 and I am 25) so she was able to stay with us as much as she could. Again she lost her hair and was very ill but she is a fighter and she never complained ever. She finished chemo in the summer and has been on herceptin and trying alternative therapy. Today she had more results, we geneunely thought it would be good news. She has two new tumours in her liver and they are even bigger than last year. So now she is going on a trial for a new drug which is another lot of chemo. Its her 3rd chemo in 2 years and she has no one to support her. Don’t get me wrong she loads of friends but it is not the same as a supportive partner. . She is so strong but she cannot fight forever and I think today I began to realise that she wouldn’t be around for ever and I need her to be because she means the world to me and I would give up my whole life for her. I try to be strong but everyone has a limit and surely she desrves a break. I need her to be here, she is my best friend and the most amazing, brave person I have ever met and I cannot ever imagine her not being in my life.I have read these threads for the last couple of years but now feel compelled to write as I have run out of strength. This disease is so unfair.

Dear Elle

Welcome to the forums, I am sure you will soon recieve valauble support from your fellow users. I am sorry to read that you are having such a difficult time at the moment and if you feel it will help you to talk things through with someone please do call our helpline on 0808 800 6000. The staff here are breast care nurses or people who have experience of breast cancer themselves and can offer you information, support and a ‘listening ear’.

The line is open Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes

Lucy
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Breast Cancer Care

elleg - i cried reading what you and your family are going through. I just wanted to say that your mum is very lucky to have daughters like you and your sis. I have 2 daughters slightly younger than you 2 and they have so helped me cope with everything. I agree with you that the disease is totally unfair, try and stay strong. I’m sending a big hug to you xxxx

Oh ElleG,

Your last sentence sums it all up - this disease is so unfair. Your Mum has battled time and time again and your sister and you have watched her. Although you did everything you cold to help her, you still felt helpless because the real battle was within her.
You say she has nobody to support her, she has her two daughters and her friends - you all helped her through before and you will this time. Next time she has a problem, you’ll still be there for her. Yes, the support of a partner that truly loves you is the ideal … but far from the norm. Frequently you hear of partners don’t support at all, even to the point of walking away because they cannot cope with it. Sometimes even the most loving partner cannot really help because of all kinds of reasons. A partner is not the answer. And it sounds to me like your Mum has all the support she needs.
It does sound though that this latest blip has really hit you for six, that is has suddenly hit home that life is not forever, that we do die sometime. But until that day, we are all living. And until that day we go on living. Even after death we still have memories that nobody can ever take away from us. My mother died 5 years ago, but apart from not being able to just pick up the phone - I don’t feel like she is very far away at all. My sisters and I talk about her as we always did. Until my father died - so did he. Yes, we miss her physical presence, but whilst we remember her, she is not gone.
You will get through this new blip and come through it stronger than before. As will your Mum, your sister and Mum’s friends.
hugs
x x x

Hi Elle,

I just wanted to write and say how much I empathise with you. I am in a very similar situation to you - my mum was diagnosed with aggressive BC 2 and half years ago. She had lumpectomy, 3 failed rounds of chemo and has just finished her second radio. She is tamoxifen and herceptin negative so no help there either. Like your mum, hers is now secondary, but in her lungs and she also has lymphodema.

I’m 27 and have a younger brother and sis. I have also lurked in the forums for the last couple of years but rarely posted. And like you, I feel like I have run out of strength. She is lucky that my dad is there to support her (but although he is physically there, I’m not sure how much she gets from him emotionally). She seemed her normal self until the last 3 months or so when the symptoms became more visible. Now I feel I’m losing her already because she is so tired and debilitated.

Do you sometimes feel that you lead a double life? I sometimes feel like I’m dealing with all of this and all my friends’ lives are happy and normal. It’s become very isolating and lonely. I’m also finding it hard to cope with my stressful job (teaching).

Anyway, I just wanted to say how I totally understand how exhausting and stressful this journey is for the family. I’m not sure what words of comfort I can offer as I’m looking for help too - but I’m sending you a hug from someone who genuinely understands!

One thing that might help - I’ve finally booked in for some counselling - there’s a really good centre in Battersea (not sure what part of London you live in). Are you having any?

Hugs, xxx

Dear All

Thank you so much for your kind words of support. It really does help knowing there are other people who understand (although I wish you weren’t having to go through it as well). I was hoping that as a few days had passed I may be feeling a little brighter but the empty numb feeling is still there. I am sure I will come through this soon and be back to my normal positive self and the daughter my mum needs me to be.

Skylark- I completely understand you. I too feel very lonely and isolated - i go to work every day yet I am not really there. I feel guilty that I am not going to treatment with my mum or spending every second with her becuase I don’t want to look back and wish I spent more time with her. My friends try not to mention the subject because they don’t know how to handle it - which I understand but it just makes me more isolated. My sister deals with it differently to me and in front of my mum and sis I put on this brave face that everything is ok. Its only when I am on my own that I really let my guard down. My boyfriend doesn’t know how to handle me either and I feel I am just isolating myself even more.I don’t think anyone truely understands until they have been through it themselves - which is why I posted on here. I too have thought about counselling but have not summoned up the courage to go yet. I live in East Dulwich so I could get to Battersea. I think it maybe is time for me to face up to this and start counselling but I am so scared that if I do go then I am admitting that mum is ill. Does this make any sense?
I am so sorry you are in the same situation, I understand how difficult it is to go about your daily life when all you want to do is stop the world. My mum has taken a lot of strength from alternative therapy (she was born in the 50s so think she is still a bit of a hippy!) and highly receommends the Liongate Clinic in Tubridge Wells. I am not sure if I believe in alternative therapy but it has given her the belief she will survive this and that is half the battle I guess. Maybe if your mum wants to try something new she could give them a call? I wish I had the answers to this terrible disease but instead we just have to savour every second. I could go on for hours but self-pity won’t get me anywhere.
Stay strong and take comfort in the fact I understand.
Big hugs xx

Hi Ellie

Just want to endorse every ones comments above. I lost my mum to cancer (she was 46 and I was 27) and I missed her so much and still do in that she’s never seen her grandchildren and I can’t tell her what’s going on in my life and loads of little things.

I was diagnosed with b.c. at 40 and my aunt (her sister) was diagnosed a month after me. Unfortunately my aunt only lived for another 3 years after that. I’m now 52 and my cancer came back 3 years ago (in my liver and spine) but the treatments and chemos have changed so much since 1995 that for some of us with secondaries we are living longer than would have been the case 12-15 years ago.

I needed my mum to be there for me because she was my ‘mum’ and I feel the same now for my son - I need to be there for him and I don’t want him to grow up with me not being there (he’s just turned 20 and was 7 when I was first diagnosed).

Your mum does have a lot of support from you and your sister but I do know what you mean in that she doesn’t have a partner and you do try to protect your children whilst still being honest with them.

Hopefully she’ll have a long time living with secondaries.

Pinkdove
x

Hi Elle,

Yes, it is very lonely and isolating - people seem awkward just when you need them most. My boyfriend is now a lot better than in the beginning, and most of my friends are kind, but I still feel no one quite gets it - how could they unless they’ve been through it? Like you, I am strong in front of my mum and am an expert at functioning normally, even when it’s getting me down.

One thing that’s helped is that I told my friends that I’d much prefer that they asked about mum, rather than pretending everything’s normal. Then, if I don’t want to talk, I’ll just say ‘not too bad’ but I’ll be happy that they cared enough to ask. A couple said they wanted to ask but didn’t think I wanted them to. Since we’ve got through that, I find they’re there for me more. But I still have a couple of friends who never ever ask, and it feels like I’m leading a double life.

My mum is also into alternative therapy and has become quite a meditation expert! Like you, I’m not quite sure what I think about it but there’s no doubt that it makes her more relaxed and positive which is great. She lives in Kent and I’m sure they’ve mentioned the Liongate Clinic, don’t think she’s been there yet. I’ll pass on your mum’s recommendation.

Do you find that you have random mood swings? Sometimes I feel fine and able to cope and then the slightest thing will make me so miserable. Also, like you I am incredibly guilty that I’m not going with her to treatments (though am lucky to have dad). I go home every couple of weekends and call everyday, but don’t want to spend the rest of my life feeling it wasn’t enough. At the same time, I need to keep my job and my life and stay sane - that probably sounds really selfish :frowning:

I’ll let you know how the counselling goes next week (first session) and see if it helps. It’s called the Cancer Resource Centre and it’s on York Road.

I’d be happy to swap emails so we can chat more but I’m not sure you’re allowed to post them on here??

removed email - moderator

Poor us! I am actually a really positive person but I guess this is like a diary - you only write on here when you’re down. I’m sure we’ll pick up soon - after all, we’ve both got used to getting bad news and adapting and carrying on… On a good day, I say that this experience has brought the family closer together, made me appreciate little things and taught me a lot about myself - this just isn’t one of those days!

Chin up and more hugs xxxxxx

Hi Skylark

Oh well we will just have to keep chatting on here!

I am feeling a lot brighter too spent the day with my mum yesterday and she seemed very well - she was quite tired by the end of the day but we all get tired!

Mum was at the hospital on Thursday- she was supposed to be signing up to the new trial they have recommended fo her, but she has asked for more time to think about it. She has become quite disillusioned by the NHS and the drugs they keep chucking at her. She prefers to go down the natural route rather than pumping her body full of more chemicals (which she believes feeds her tumours). If she signs up to the trial it means she is going to have to stop her alternative treatment at the Liongate Clinic. Its a case of one or the other - neither treatment comes with any guarantee but its a decision she has to make. She has told the hospital she will let them know her decision on Thursday. Think she is swaying towards the alternative treatment and I think it is unlikely she will sign up to the trial. Not sure if its the best decsion but her argument is she has tried conventional treatment for over 2 years now and it hasn’t worked so why not now give the alternative stuff the chance to help. I am not convinced either way but it is her call. I just hope it is the right one. I will let you know what she decides.

Hope the counselling session this week goes well. I am keen to know if it helps you - I may try and sign up!

Did you watch the mummy diaries on Thursday night? I know I shouldn’t but I did and was very sad, but it also made me realise that I have had 25 years with mum and that is a lot more then some of the children in the programme. Made me appreciate things more and certainly inspired me to stay postive.

Anyway hope the week is good for you and the children don’t work you too hard at school!

take care,
xx

Hey ElleG

Just wanted to say I’m in Eltham, SE London, diagnosed in Feb this year. Realise it’s your lovely mummy, not you, but if you ever want to chat, have coffee or even go for a Sauvignon Blanc fuelled lunch, I’m your lady. I’m 39, have three boys, and need to be back for 3.30 pick up. Let me know - I can find you with Satnav! xx

Sally xx

Hi Elle,

My mum has the same outlook - she is tired of all the chemicals from the NHS. She went on a drugs trial over the summer which meant she had to stop her homeopathic injections (iscadore - her homeopath says it’s a very effective natural healer.) Anyway, sad to say, the trial didn’t work - but that doesn’t mean it won’t work for your mum. I think my mum’s done with conventional treatments now - she’s in bed with radio side effects, and again it doesn’t seem to have been successful.

I never know what to think about which treatment road to go down - I leave it up to her, but it is interesting to hear about experiences with alternative therapies. Mum’s really interested to know what therapies your mum is having at the Liongate clinic and how useful she’s finding them.

Glad you had a positive weekend with your mum too, I’m doing ok at the mo - still just functioning but generally better :slight_smile:

Anyway, I’ll let you know how my appointment goes tomorrow.

xxx

PS I haven’t watched the mummy diaries, but sometimes it takes other peoples’ tragic circumstance to make us appreciate our blessings! x

Hi Skylark

Just a quickie - but have my mum here and she is better at remembering her treatment than me!!

Mums treatment consists of once or twice a week at the Liongate Clinic - Vitamin C infusions together with ozone therapy and has just started hypothermia (whis is apparently the only machine in the country) which is supposed to boost your circulation and heat up the cancer. She has been told that cancer hates heat and oxygen. They also have a nutriotinst there who recommends no sugar and basic diet with nuts, seeds, pulses- no dairy, no sugar. Mum tries to stick to it as much as she can but we are all human! We are drinking a glass of wine as we speak!! So she is not always completely following the diet. There are lots of people at the Liongate clinic with cancer of all ages and in all places. They also do complementary treatment. It does all cost but may be worth a consultation at least if your mum is up to it. Mum says she feels very well on it and they are all very caring professional doctors who have been practising medicine for years. Mum says its a better quality of life that you don’t find on chemotherapy.

Anyway hope this info helps - please do pass it on to your mum.

Hope your week is going well.

Speak soon.

xx

Hi Elle,

Thanks very much for that! Am going to pass it onto mum now. By the way, the counselling meeting was just a preliminary chat but have made an appt for next week so will let you know if it’s useful.

Enjoy your time with your mum and stay in touch xxx

I was so moved by all of your stories. They rang such a chord with me that I was in tears both for what you had gone through / continue to do through, but also because I recognised the places you were in or had been.

I certainly feel that I am in two differnt worlds there is the one where I am trying to carry on as normal at work and at home. Like you I have a very stressful job. I am also on temporary secondment to another (very large) office at the moment and whilst everyone has been really friendly - I have not told tham about mum’s cancer becasue really we don’t know each other at all and am having to carry on as if everything is fine.

I am used to being able to deal with everything that is thrown at me - but the cancer is so far out of my control - there is nothing I can do to make it go away - I find it so hard to see my mum having to go through surgery (when we nearly lost her) and going through chemo -. She has been such a good person - Like your mums she has also been really really brave and I admire her so much - I don’t know if it is a coping mechanism, I have told her she doesn’t have to be stong “for us” but she continues to be - however (and this sounds really selfish) sometimes this makes it harder because I feel like a failure because I can’t cope with it as well as she can and she is the one who has the cancer and has to go through these drug treatments - so I try and hide how I feel from everyone because what right have I got not to be coping when she is managing? Does anyone else ever feel like this?

I feel that I have had to enter a whole new world - with strange terms and expressions - grades and levels, words that I wished had never come into my vocabulary and to face the reality that she could die, which I guess I wasn’t ready for.

Hi SophieKym,

Another one joining our empathy-fest! I definitely know what you mean when it’s wierd talking about it with work colleagues. Luckily mine are nice and supportive, it must be particularly strange for you to be with people you don’t know what well. And yes, like you, I totally feel guilty that mum and dad seem to be coping better than me and they are having a harder time (though they think I’m coping well, I’m good at putting on a brave face). How long has your mum had it? Is it primary or secondary?

I’m sorry to say that my mum is going into a hospice as she’s been pretty unwell in this last week :frowning: They say it will only be for a week or so to get her medication sorted out, but not sure if this is just to lighten the blow. Either way, it’s not a great surprise and she needs to go - she’s lost a stone in 2 weeks cos she has no appetite, and her drugs are making her so dopey.

So the news is bad here, but there is no reason it should be like this for your mum, or for ElleG. Anyway, this site can be a lifeline at times (and depressing too - sorry) so stay on here and we can all support each other.

How’s your mum Elle? xxx

Hi Skylark

Thank you so much for posting a response. My mum has primary cancer which was diagnosed in July this year, but had to have all her lymph nodes removed as well as the lump - the tumour was very aggressive and had grown to over 3cm in under 18 months. Despite fighting hard she is now in hospital with a very high temperature (over 2 weeks) and an infection, lots of mouth ulcers etc from the chemo cycle. Fingers crossed there is no secondary cancer.

I was really sorry to hear that your mum has been having more problems - it sounds as if the hospice will help - but I’m sure it doesn’t make you wish it wasn’t happening or that it would all stop or that you could somehow take it all away. You will both be in my thoughts and I hope that they are able to get her medication back on track.

Hi Sophie,

Your poor mum! A worrying time for all of us. That’s the good thing about this site - you finally find people who understand exactly what you’re going through. My mum is on a cocktail of drugs prescribed by different people and the hospice are going to sort that out so hopefully she’ll feel better soon, not sure if she’ll be able to come out though but here’s hoping…

Fingers crossed for your mum too xx

SophieKym - how unfortunate your mum is also ill. It must have come as such a shock to you and your family. I understand how you must be feeling. I like you find it very hard at work - I started a new job in August and it is a contract position so I will be leaving in February haven’t told anyone at work that my mum is ill and some days I really want to tell people but it is a very corporate environment and I have a team underneath me so don’t feel I can be as honest as I like. My last job I was there for 3 years and the people were so supportive about my mum and even now when I found out her recent results they have been there for me. However new job or not I don’t think it would make this situation any easier. We all put on this front of coping but I know and understand that underlying that is a different story. Sorry to hear your mum is in hospital and hope she will be home soon. Do keep posting as we are here to support each other.

Skylark - I am so sorry to hear that your mum is going into a hospice for a short while. I hope it will give her the care she needs and all the nutrition she needs to be able to be strong enough to cope at home very soon. My mum is also losing weight quickly and doesn’t have much of an appetite. She is however on the whole doing well. She has decided against the trial and is spending as much time as she can at the Liongate clinic for the next month having vitamin infusions. She is going to go back to the hospital for another scan in a month to see if they tumours have grown/ shrunk. Very brave of her shunning conventional treatment but quality of life is her priority and she didn’t think she would have that on the trial. Feel very mixed in the run up to Christmas - always think is this going to be the last one with mum. Shouldn’t think like that but it always creeps in. We find out on 18 December if mums cancer is genetic or not - I really hope for me and my sister that this is not the case. Not the type of news you need to know before xmas! I do have some good news though which has lifted the family and why I haven’t posted recently. My sister has found out she is pregnant - its early days but it wasn’t expected and she is still gettng over the initial shock. However for my mum it is her dream come true becuase she was so scared of not ever seeing any grandchildren that it has given her a renewed passion for life and determination to stick around for as long as possible. I just hope she stays around long enough to see any children I may have in the furture.From my perspective I am so pleased to have something else to focus on other than the cancer - is this selfish? Some moments I am so excited about becoming an auntie and then it switches to being so sad about mum - such mixed emotions.
Anyway how is the counselling going? I really hope your mum begins to get stronger. You and your mum are in my thoughts and am here to talk whenever you need my support.

xx

Hi,

I am new to this forum and thought that it would help me cope. My Mum has had bc for 23 years. My Mum was 42 when she had a lumpectomy she was on Tamoxifen and then it came back 14 years later and she had her breast removed, massive operation they did what you call a flap and took muscle from her back to rebuild it slightly. 4 years later it was in her lymph nodes so she had some removed, she also has a lymphodemia arm. For the last 18 months she has been quite breathless and x ray showed fluid on her lung. She had a pleurodesis as she had a pleural effusion. We got told that it was the cancer but nothing to worry about that it was treatable. My Mum was on Faslodex for 10 months but then she had 2 lumps in her neck and one one her head. We got told 5 weeks ago that the treatment wasn’t working and that the cancer had gone to her lungs. She is now on her second dose of EC chemo but I am finding it very difficult to cope. My Dad had also gone to pieces. On a positive note she has been alot better not as breathless but I can’t stop getting upset.

I have a 4 month baby and it upsets me that she won’t see her grow up. I just can’t imagine life without her she is my best friend and we do everything together. I see my Mum everyday. IMy Mum is positive and a fighter.

Hello Holly

I have just noticed your comment, as this last thread was accessed nearly a month prior to you coming on it may be that it has not been checked for a while.

I do hope you find the support you need at this very difficult time, the helpline numbers on here are for family members to talk and seek support not just the ladies recovering or having treatment for Breast Cancer. Please do ring the numbers as i am sure they will be able to offer great help to you, also you could start a new post yourself and i am sure the lovely ladies on this posting will come right back and post to you. In the meantime i send you a great big hug from me and all my very best wishes.
Suzy