Severe depression

I am really worried about my sister who had a mastectomy a year ago, followed by chemo and radiotherapy. She started on tamoxifen and is now going for a year’s herceptin course.
She’s normally a cheerful individual but the trauma of the disease and treatment has taken its toll and over the past 3 months in particular, she has become more and more depressed. After my sister was diagnosed [and in view of the fact that our eldest sister had died many years ago of breast cancer] I went for a mammgram and found that I too had breast cancer. I had a lumpectomy, chemotherapy, radiotherapy and am now on arimidex. I am also on warfarin as I was rushed to hospital with multiple pulmonary emboli.
I am a retired registered nurse and nurse teacher, and after my sister told me of her illness I resolved to become something of a breast cancer guru so that I could give advice and moral support. We live 130 miles apart and as I’m 77 yrs of age I can’t be physically there to support her, but when she phones I call her back and do my best to give advice and reassurance. Two married sons live locally - but one has MS, another son’s wife has just had a baby, and she has a daughter. Despite their very busy live they do visit frequently and help in many ways. Her husband is a kindly soul with a somewhat gloomy personality who does his best in difficult circumstances. Now things have reached crisis point.
My sister’s mental state has deteriorated over the past 3 months and I am now quite sure that she exhibits all the symptoms of severe clinical depression and needs urgent psychiatric treatment and counselling. Her GP does not realise how ill she is and has said there is a 6mths waiting list [but she can see 3 different GPs anyway]. I have told my brother in law and niece to make fuss, and a Macmillan nurse has said she will try to get counselling. I have also given them the BC free phone help number and mentioned support groups - but they haven’t rung yet because of the holiday.
As I have tried to help and given her positive ways to help her deal with her [real or perceived] problems - one little thing at a time - so a new problem is raised - insomnia, - sleeping pills don’t work, loss of appetite, can’t cook - don’t know what to cook, loss of weight, nothing fits, inability to think straight or cope with anything, feelings of loneliness, fear of being alone and death, fear of financial difficulties, inability to cook anything or plan meals, house in a mess, hopelessness so that even if she’s referred to psychiatrist no treatment will work and so on…
This sad situation could end in a tragedy and I have no more ideas on how to help. In my experience the medical and nursing professions have never really been much good at dealing with mental problems such as depression and a lay persons approach of’pull yourself together’ just does not work!
Is there really no help in the NHS to help breast cancer sufferers such as my sister?

My BCN arranged psychological counselling within 4 weeks when it became apparent I was becomming depressed.Can your sister contact her BCN (if she has one)?
Keep on at the GP too as 6 months is way too long!
You are right about the support not being sufficient to help with the emotional effects of a cancer diagnosis.
I hear that if you want a breast augmentation/reduction ,you have to see a psychologist first but no such luxury with BC!
Good luck,
Dot
x

Her husband rings the BCN number but it’s always on answerphone and noone returns the call. He rings me in desperation.

The ideal treatment for this kind of depression is anti-depressants AND a ‘talking therapy’ of some sort. However, the latter works only if the ‘patient’ wants that kind of help, and it sounds as though your sister might be quite resistant to it. Would she be prepared to have therapy for the sake of her family?

As to accessing therapy, the quickest (and often most successful) way is to find someone privately through the BACP website. Details of registered therapists are arranged geographically and contain important information about their qualifications, experience, and areas of expertise.

Of course, in an ideal world anyone who needed therapy would be able to receive it via the NHS, but…

Sass (psychotherapist, among other things!)

Thanks for your comments Sass. My sister would certainly go for counselling and/or drug therapy but cannot access the help she needs. That’s the problem. She couldn’t afford private care - even NHS dental charges are hard to meet. As I’ve said she’s normally of a cheerful disposition but is now overwhelmed by despair.

Could the GP help at least with the insomnia? I am asking because I developed insomnia and cognitive problems on herceptin that gradually worsened while I was on it, so some of the difficulty may be the medication. The last three months were particularly bad. I had difficulty coming up with the correct words when I talked and have since found that other patients have this problem. I found that taking a single trazadone on the days right after the herceptin lessened the insomnia, even though that is an off-label use. The insomnia made it hard for me to think and do things generally.

Hi I went through a really tough time for at least a year after my primary and secondary diagnose. I would say it is only recently that I have been improving. I received help from several areas
My GP was great and prescribed me anti depressants and sleeping pills. When things were worse he came round to see me every week. I have scaled back these visits to once a month as I feel that I am improving… My gp is great though and will respond to me the same day if i leave a message. I am taking amitryptyline for my depression -dosage is slowly being reduced as I cope more. Also on Zoplicone for my insomnia. Insomnia is a terrible thing it makes you feel even less able to cope.
My BCN. also great. There are four of them. I have email addresses for all of them. Sometimes they are really busy and can’t phone me back but will always reply to an email. If i need an appointment just to chat they will arrange this. My husband has also been to see them for support
My Macmillan nurse-again always at the end of the phone. She arranged for me to see a trained counsellor to talk me through my depression and also always took the time to ring me once a week and come round as often as she could
I have also been seeing the Dr at my local hospice. Again to chat through stuff. She is great at chasing up appointments and scans. Very supportive. I also went on a 6 week course at my hospice although this was only open to people with secondaries. This course was wonderful and dealt with lots of issues including insomnia and excercise

Does your sister have a macmillan nurse? I also can’t believe there is so little support from her GP. What about a support group she could go along to? There is plenty of support but not widely advertised - i know I had to keep asking to find out although it did help that my best friend was the sister of the cancer ward at my local hospital and could find out stuff for me. She was excellent and came and gave my family counselling in her free time of what was going to happen to me nd what treatment i would receive. I think your sister or her husband needs to go back to your gp and also ring the Macmillan nurse again. There is support out there so I do hope you get something sorted.Your sister is lucky to have someone as supportive as you

All the best
Jools

Thanks for your replies. The coordinated kind of support you have had jools is exactly what I would want for my sister. I told her to ask for Zopoclone - which was prescribed but she says it doesn’t help. She also has an antidepressant - but it clearly isn’t the right one for her. I will have to see what tomorrow brings but if her timid husband cannot cause a stir to get one good GP to organise the drugs and counselling she needs then I guess I will have to cause a stir myself. I would really like an independent person to take the load. The time is 22.40 and once agin she’s the last worry on my mind and will no doubt be the first thing I think about in the morning. i am blessed to be able to cope and have a wonderful and cheerful BH at my side who does cosset me. That does make a great difference. But I know there are many ladies who have had a tougher time than me and who also deal with difficult symptoms and treatments.
So I send my love to all you brave ladies and may peace be with you all. Goodnight xx

Well my sister didn’t get the help she needed in an orderly way via her GP. Even though the oncologist had written to the GP after saying he couldn’t refer her for a psychiatric consult. It all had to be triggered by a crisis - calling 999 after an incident, with the police arriving being very good and giving a crisis team telephone number. Yesterday my sister was admitted to hospital in an agitated state. All disgraceful and unnecessary - just because nobody would listen and understand that this patient with breast cancer needed psychological support at a critical time in her life.
All I can hope now is that she can get the counselling, drugs and support to set her back on the road to recovery. She’ll need it as she still has months of herceptin treatment to come.

Oh Feisty sister. I am so sorry to see your post. I just hope now that your sister has been admitted that she will get the help she desperately needs. She is so lucky to have a sister like you

Jools

Hi Feisty sister

my thoughts are with you and your sister
I 'm n anti-depressents and sleeping tablets and the worst times are when I have lack of sleep!!

I hope she gets the help she so desperately needs

Kay x

So sorry to hear this. Are you able to visit her regularly? It’s sometimes necessary to be sure that the treatment is of the standard you would hope and expect (sorry, but this has been my experience of NHS psychiatric units).

Sass xx

Thanks for your comments. As Sassie says NHS psychiatric units are said to have their faults. This morning I rang the ward and spoke to the staff nurse [who seemed aware and sympathetic] said I was a retired nurse teacher and gave some of the history. My sister has settled and is not so agitated I’m told so I’m thankful she can now get help she should have got a month ago. I’m 130mls away and can’t visit because of my own health problems but I wanted them to know I’m here and want to know about the care she’s being given.

Kay and jools I hope you continue to get the help you need. Unfortunately lay people and some professionals don’t always understand that clinical depression is an illness that can’t be brushed off by a ‘pull yourself together’ stance. Severe depression can be nipped in the bud if only people and professionals would listen.

But isn’t it odd that it took a 999 call and the sympathetic police to mobilise a crisis health team where an oncologist, GP, MacMillan Nurse, family et al all failed?

Greetings
Well it’s 2 months since my last post and my sister has been an inpatient since then. My sister is as bad as ever so it’s very distressing to speak to her. The first antidpressant didn’t work so she is on another one and could be in hospital for some time. I am so angry that her GP didn’t listen when she told him how depressed she was, then the depression could have been nipped in the bud.

As for me I got over the pulmonary embolism and am now on Warfarin. The dexascan put me at the lower end of normal so I’m taking calcium tablets and cod liver oil - self-prescribed!!! Unfortunately I’ve been recalled for ultrasound and ? biopsy after having my first follow-up mammogram. The 20mm tumour was grade 3 so I’m keeping fingers crossed. At least the arrival of a new car tomorrow will keep my mind occupied until Monday!!!
Good wishes to you all
feistysister

Well it is now well over 2 months since my last post and since then my sister has been an in-patient in a psychiatric ward. I am so angry and upset because this would not have been necesaary if the responsible professionals had acted promptly.

After my sister was admitted she was eventually prescribed antidepressant drugs but they did not work and were changed after 6 weeks. There has been little or no improvement in her mental state. Goodness knows how it will all end. I cannot believe that a psychiatric ward and institiutional care are the best way to help a patient who has suffered - and bravely coped with! - all the trauma of mastectomy, chemotherapy and radiotherapy and now Herceptin treatment. Surely there should be dedicated mental health teams ready to help patients with breast and other cancers, before they reach crisis point.

So all I can do now is to continue to give what limited support I can to my sister and her family and to warn other breast cancer patients who may feel depressed to seek medical help urgently and persistently until they get the help they need and deserve.
Best wishes to you all x feistysister

Your sister’s plight really has worried me. I looked through my old herceptin warnings leaflet and noticed that under ‘other common side effects of herceptin, occurring in less than 10 out of 100 patients’ are insomnia and fatigue, as I had remembered, but also malaise and ‘anxiety, depression, thinking abnormally’. I think that ‘thinking abnormally’ probably refers to the problems with attention and concentration that people on herceptin develop, perhaps also some of the weird stuff like loss of verbal fluidity, rather than anything more sinister, although I am not entirely sure.

Did your sister’s problems arise after the start of herceptin? Unfortunately, I have found oncologists to be rather oblivious on such matters.

Dear Christine
The depression started probably 6wks after Herceptin treatment started. The oncologist has apparently said it has nothing to do with Herceptin - but who can say. So many side effects get mentioned -just to cover manufacturers, that it’s to hard say which drugs may be to blame. The paychiatrist certainly hasn’t blamed it and my sister still goes to the other hospital for it every 3wks. But so far anti-depressents haven’t worked. We all live in hope that she will soon return to her true self.
Best wishes xx

Hello everyone

I have been prescribed citalopram 10mg. and have only taken 3 days but having symptoms of fast heart rate, headache, excessive thirst. which I am wondering is due to this drug. Would be grateful for any feedback from anyone re side effects, how beneficial it has been in helping the depression, how long before effective, etc. etc. I have tried so hard to resist antidepressants since diagnosis Oct 2007, but am so negative that I have given in, having talked to others who went down the same road and now say they feel ‘normal’. I don’t know if my anxiety is causing the fast heart rate or whether it is causing the anxiety (chicken or the egg!)

I have had a fasting blood glucose today to check for diabetes!! but hoping for the best.

Love dee

Hi Dee,

I was prescribed citalopram 20mg when first diagnosed in Sept 2008. I too had palpitations,excessive thirst and feeling of nausea.I stuck it out and started to feel better and calmer after about 2 weeks. I went to GP around Xmas as I felt I had hit a brick wall and my emotions were allover the place!I now take 40mg per day and don’t think I could have got through chemo and rads without them. I too did not want to take tablets as got through diagnosis of endometrial cancer 3 years ago but looking back I was a ‘wreck’. I have been much more positive and upbeat this time even though I hsve been through so much more. My advice would be to stick at them, do not feel ‘guilty’ for taking them. They are non addictive so you will not be on them forever but if they help you now I am sure your positivity will return and you will feel ‘better’ soon.

Hope this helps

Brenda x

Well I’m pleased to say that my sister has been discharged from the psychiatric ward after 4mths. If only she’d been a patient at my GP surgery she would have received immediate help. It’s such a relief to be able to have a normal conversation with her. I can only end by urging anyone with depression to seek help as soon as they feel depressed and to insist on treatment if the depression persists.
Regards to allxxxx