health visitor's lack of understanding

I am lucky that after 8 years and IVf I gave birth to a daughter this summer, unfortunatly I was diagnosed with breast cancer whilst pregnant. After op and radiotherapy I am trying to ‘get back to feeling normal’ and going to mothers and babies groups but my health vistors (have had several due to people on sick leave) cant seem to understand what I have been through. I could,nt breast feed (on tamoxifin) and asked about a bottle feeding support group (they’ve got one for breast feeding) but they said it was’nt their policy to have a group for that. So I fumbled through. They asked me to do something called ‘The Edinburgh Test’ its for post natal depression whilst I was waiting for my results. Obviously I scored high because I was anxious re test results. However the Health Vistor siad ‘Oh I think you may have postnatal depression’ but she did’nt do anything and then went off sick with stress. The second health vistor also did test on me and the result was a lower score. I had test results back by then and I was glad I did’nt have to have chemo. Anyway I am now on my third health vistor who suggested to me that I go this group. I said is’nt that the one for postnatal depression. She said oh we’re thinking of expanding the group, i.e. to include that women with breast cancer cause we dont know where else we can stick her. I really dont think I need to sit in a room with a load of depressed people. I dont believe I have post natal depression nor does my docter. I think these health visters cant believe that I dont have it becaude it is more comfortable for them to stick me in that pigeon hole, cause their trained to deal with that. I can see in their eyes that they cant deal with the issued relating to the breast cancer, it seems to be outwith their training or remit. I feel angry, I feel anxious in case the cancer comes back. I feel let down. But I love being a mum and I don’t have post natal depression.
Sorry a bit of a rant but has anyone else had similar problems?

Hi raonaid

Welcome to the forums where I’m sure you will receive lots of help and support from the other forum users. Below is a link to information on Breast Cancer Care’s telephone support group, there is a telephone support group for younger women that has been developed specifically for women in their 20s and 30s, discussions cover issues such as coping with treatments, relationships, fertility, children, work, money, as well as everyday life. For more information you can either call the helpline on 0808 800 6000 or email <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%74%65%6c%65%70%68%6f%6e%65%73%75%70%70%6f%72%74%67%72%6f%75%70%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%74%65%6c%65%70%68%6f%6e%65%73%75%70%70%6f%72%74%67%72%6f%75%70%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>

breastcancercare.org.uk/content.php?page_id=3750

Best wishes
Katie

Haven’t had a similar problem but my sister in law is Area Breast Feeding Adviser and is the most thoughtless person regarding my bc and so…can’t think of the words for it. Put it this way. In her mind, breast feeding is the only way. She has no sympathy for anyone who can’t cope and yet her first child, who was breast fed almost 24/7 is the sickliest child I know. She is also extremely badly behaved and they are having real problems with her now she has a baby sister. Niece is 4 now. I can’t remember her ever asking me how I am, she didn’t visit me whilst I was having op despite working in the same hospital and she is the last person I would ask for advice. It doesn’t sound like post natal depression to me but a natural reaction to what you have been through and I don’t think that sitting with a load of breast feeding mummies will help your state of mind at all.

I would concentrate on enjoying your beautiful daughter and give these sort of clubs a miss. I would try going to a mother and toddler group. I did have post natal depression and found these helped. I didn’t seek help and sometimes wish I had but managed ok. I would also contact a Mc Millan nurse. They are so understanding and will come to your house and chat to you about how you dfeel. Mine also made the doctors give me some low doseage anti depressants which were life savers.
Good luck Raonaid. Hope some of what I said helps

Debbie
xxx

had to edit this due to illegable spellings…lol. Tam brain!!!

My daughter is now a teenager, but I still remember my Health Visitor being hurtful and unpleasant. I was forced to see quite a lot of her in the first 6 weeks because I had a C Section and while you cannot drive, they must come to you.

In my HV’s eyes, nothing I did was right. She was undermining my confidence about everything. For example:
* My daughter was born in the summer and it was hot, so I left her sleeping in the daytime in just a vest and nappy, with a sheet over her. I knew she wasn’t cold, because the back of her neck was sweaty. HV told me she was inadequately dressed and should be in a babygrow. My GP agreed with me, saying getting overheated was a bigger danger for summer babies than getting cold.
* I couldn’t breastfeed though I tried. Nothing to do with cancer as it predated that. I had pre-eclampsia before the birth and continued to vomit for several days after the birth and was on a drip. I was too rundown to have any milk (proved it with an electric breast pump). HV tells me that I’m not doing the best by my baby and almost everyone can breastfeed. I think the important word is “almost”.
* My daughter was a very long baby (her father is tall) whose weight was below that shown on the chart of average weight compared to length. HV accused me of not feeding her enough formula even though I was actually exceeding the predicted requirement on the tin. GP said average weights are not norms and she felt that my daughter was probably the correct weight for her, as she had a tall slim father. GP said that as my daughter looked very healthy, active and alert, she had no concerns.

My GP got my HV changed.

There is a difference between feeling a bit low and being clinically depressed. If you feel sure that you are in the first category, you are probably correct. A new mother won’t be cheerful all the time (lack of sleep sees to that).

I think if you don’t treat your HV as your new best friend, they have to find a reason such as depression?

Do what you think will lift your mood and see what happens.

Good luck!

I was diagnosed six months after pregnancy and my health visitor was brilliant. I think that the problem is that your situation is so unique that they don’t know what to do with you. When I was in treatment I was lucky because I met a woman who was diagnosed while pregnant and we could commisserate. It really helped alot.

In your health visitor’s defence, I would say that it is important for you to figure a way out of your depression. It is not good for a baby to have a depressed mum, no matter if it is post-diagnosis depression and not post-natal depression, and your health visitor is probably trying to help you the only way she knows how. Perhaps your health visitor will ease up if you find other ways of coping.

The BCC moderator has already mentioned the phone support groups, but I thought that your situation is so different that you might benefit from BCC’s one-to-one support programme. The supporters are cancer patients who are five or more years past diagnosis but who would have some experience in common, such as being diagnosed while pregnant. My supporter was wonderful.

I think that going to normal mum and baby groups would be very good for you. If your health visitor can’t provide you with one, there would probably be other ones in your area, such as the National Childbirth Trust teddy bear coffee mornings. Although the national organisation does push breast feeding rather hard, the mums I have met are not judgmental. I had to give up breastfeeding because my little boy had severe feeding difficulties and the breastfeeding mums never gave me a hard time. Alot of the discussion at NCT teddy bear mornings centered, as I recall, on how unreasonable health visitor expectations were. A good way to get out of the house, meet people, get your mind off cancer and have a good moan about your health visitor all at the same time.

Christine did’nt you read my post .I DO NOT HAVE POST NATAL DEPRESSION. I am going to several mother and baby groups now my treatment has finished. Due to my remote location I had to stay at the hospital (its a 6 hour round trip) for the the 6 week course of treatment, coming home at weekends so I was unable to attend any groups during that time. When i am not thinking about the breast cancer I am happy. I love my baby we laugh and have fun together. I trying to move on and it is annoying me off that they think i am depressed, what a load of rubbish.

So sorry that HV not listening to you. Yes we know breast feeding is good for baby but you should have had loads of support in bottle feeding. One of my daughters is expecting any day and the thought of breast feeding nauseates her. I breast fed all mine 6 of em. I fully support her decision. Can’t understand why a HV wouldn’t understand how frightening bc diagnosis is. I am 57 and worry every day at some point about the threat of it reoccuring. I have often thought of how you younger women cope with a baby and bc. My youngest is 17 and if there is one thing I have been grateful for it is that my kids are grown up. I am like you, happy until I remember and then I have a few wobbly moments. Enjoy your precious baby. You sund fine to me just like every one else on this site. Ask your HV to access this site it might do her good and giver her an understanding of how we feel. Love Eileen

Hi raonaid.

Sorry you are having problems with your healthvisitor. Most of their training is to do with healthy women although most will have been nurses before that. I think the suggestion of speaking to the macmillan n urse is a good one as they will be able to point you in the right direction. Are there any breast cancer support groups in the area - you should be able to find out from your breast care nurse. also in my area the District Nurses offer support to cancer sufferers of all ages. Ask for thier number from GP. If you get chance go on a healthy living day organised by breast cancer care as their you will meet ladies in similar positions as yourself who are the best form of support.

Jillxx

Hello Raonaid

There are good and awful Health visitors, as there are good and awful in many professions. As a Health visitor myself ( a good one of course), I think you have suffered from a lack of continuity of care. Although ALL Health Visitors are registered nurses, not all will have had any experience of oncology or the indescribable emotions which go with it. Prior to BC, I could only begin to guess what the mum’s I was responsible for were going through -and the “guessing” is hugely different from the reality in my experience. I don’t have a magic soloution but I would ask if there is a health visitor who has any recent and close experience of dealing with BC , or if you have met one that you like from a personality perspective , that you have her as your “named” HV. Regretably ,most HV’s will believe that once you’ve had treatment you can put it all to the back of your mind and “move on”. If only…
Cherry

Just found this thread and it angered me so much the attitude of your health visitor, but it did not suprise me.We expect because they work in the so called caring health profession they will ‘care’ and ‘understand’ however they don’t.
I go to a clinic for something not cancer related and i have found one of the nurses there so annoying. Infact i cringe when i see her. she has come out with some hurtful comments like ‘i make my BC an excuse not to work’ and after recent MRI scan and it being a tendon tear ‘there you go then your fine you look great and theres no excuse not to carry on as normal your cured’ How the hell does she know I am. Also she doesnt work lifting children all day she sits on her bum giving ‘crap’ advice.

You most definately do not want to be with depressed people and label yourself. I have even found that with cancer support groups i quit the one i went to last Jan.

As regards breast feeding it must be awful for you not to be able to feed. I could not feed my daughters i had a awful breast abcess funnily enough this is where i got BC ( a different story) I felt so sad as alot of friends fed no probs. My children are wonderful now 19+ well loved and intelligent.

You let me tell you are marvellous to be getting on and looking after your precious baby so dont let anyone especially this HV get to you.

thinking of you
Rx

Have you tried contacting MacMillan Cancer Support?

My GP referred me recently as I was very depressed about my diagnosis and they visit you in your own home and let you talk about whatever you want and concerns you. I was reluctant at first because I associate their services with terminal care which of course is not the case and cannot recommend them enough. I think you will find them sympathetic to the situation you are in and you will be able to talk to them about your concerns with the ‘service’ from you health visitor.

Lots of good wishes to you

Angee xx

I agree with Angee. The radiographers referred me as I couldn’t get through a single session without bursting into tears and having panic attacks. I am normally a tough person who can put up with most things but the constant radiotherapy delays, 4 and 5 hours some days, just tipped me over the edge. A lovely Mc Millan nurse came to my house, talked about how I felt, rang my doctors and MADE them give me some mild antidepressants. I had gone to the doctors previously to this and was told that drugs were not the way to go even when I told one I felt like taking an overdose of paracetamol. That is how bad I felt. I have no faith in doctors, not much more in bc nurse but wouldn’t hesitate to ring Mc Millan nurse again.

Debbie

Just realised I have already said this…Tamoxifen brain again no doubt. Am leaving posting unchanged, none the less
xx
xxx

Hi Raonaid,

It sounds great that you are having so much fun with your baby. Hurrah.

How annoying that people are trying to pigeonhole you. I reckon that any anxiety about BC is a thoroughly normal reaction and as unrelated to post-natal depression as you can get. I’m sorry that people are so unimaginative and unempathetic and unable to change their mindset to include a new situation. But think positively; at least your GP has some sense.

The HVs clearly need to label you in some way so why not produce your own label the next time you see them.

How about:

“Post-BC Warrior Mum” (rather than “post-BC worrier mum”), “BC Bolshevic” (if you are a political firebrand), “Post-BC Post-Natal Postgraduate” (if you have a degree"), " or possibly “A Maternal Amazon” (only if you’ve had a mastectomy).

I’m sure you’ll come up with something.

Good luck.

SuperSue

I was diagnosed when 30 weeks pregnant and had chemo during pregnancy and still having it. My baby is 10 weeks old and i have 2 older children. I refused to do the edinburgh test when the baby was 6 weeks old which the HV did not understand at all - how i feel the fist week after chemo is not how i feel normally - my HV could not understand this at all. The only thing she has offered me is to join her craft group which is laughable as my chemo side effects are almost unbearable and most days i struggle to get dressed and rely heavily on my older children to help with the baby as we have no family living near to us. It is as if the HV don’t actually listen to what is being said - after the 6 week check she is not planning to see me again till february. I don’t fit into the depressed box so i don’t get any support, i’m not breast feeding because i didn’t produce any breast milk - so i don’t get any advice. There is a definate lack of training for women in our position of having babies and breast cancer.
Annie