Emotional Support

Hi Everyone - I was wondering what experiences you all have of emotional support offered by the NHS or McMillan? Mine is rubbish to say the least! I was diagnosed with secondaries Oct 08 and have now had two lots of chemo and various bits of radio and hormone therapy. During this time i must have seen 20 plus onoologists so have not been able to build up any relationship with a doctor and am never asked if I would like to talk to anyone. THis time last year I made representation thru the PALS service and got a reassurance that my comments had been ‘taken on board’ and that the availability of the McMillan nurses would be promoted in Oncology - but nothing has changed and I am not sure I have the energy to complain again! I have asked to see the nurse on a couple of occasions which has been helpful but wonder why it always needs me to make the running. I also made contact with the Mcmillan nurse attached to the GP practice and he came to see me in Nov 08, said he would ring in a month and i am still waiting!

Does anyone have a better story to tell or is it rubbish everywhere? I am a pretty resilient person and am amazed how far I have come basically with the support of friends but i do think the NHS should take account of our emotional needs as much as medical needs,

Alison

Hi Alison, sorry to hear that you are struggling to get help. I was referred to a Mcmillan psychologist via my BCN. Which was helpful to me. Also, have support from Sorbil House at Mount Vernon.(Haven’t been but I know they do a lot and have a 24 hour help line). Which I used once at 4am, when I was in a panic, recently and the nurse was very good.

I’m surprised that you haven’t been allocated a Mcmillan nurse, I was even though I don’t need nursing as such but a lady was sent to meet me at home and have a chat and I can ring her if needed.

Maybe I’m more fortunate in the area that I live in. McMillian do have centres that offer drop in services and other things.

I’m really sorry that you have had this problem finding support. Maybe a call to the help line here could help you find the right support.

Best wishes,
Paula

Hi Alison

I am sorry to read you are struggling with emotional support. Breast Cancer Care have many different ways you can receive support. We have an online chat facility where you can join others with a secondary diagnosis and speak in real time on-line. This service runs on a Tuesday evening 8.30pm to 9.30pm and from 13 January there will also be a session on a Wedenesday from 11.30am to 12.30pm. In some areas there are secondary support groups as well as other services which you may find supportive. Please have a look at the link below as it takes you directly to the web page with the different support available.

breastcancercare.org.uk/about-us/our-services/support-for-secondary-breast-cancer/

I hope this is helpful.

Kind regards
Sam (BCC Facilitator)

hi alison
I totally agree, i was diagnosed with liver secondarys on 4th dec 09, my own gp has been fantastic and obtained results and sent me for tests i feel my oncoogist is just going through the motions with me!! nobody has mentioned mcmillan or any support services to me!galen x

sorry to hear about you lack of support ,we have mc millan nurses attached to where i go for chemo ,theres always 2/3 there to talk to ,think they tend to let you make contact with them ,rather than other way round .My GP has been no use at all ,when i got diagnosed with secondarys in lungs and liver ,i got upset and said what shall i do "write xmas cards for a few years to close family and friends was his reply"that helps some people !!! Real positive vibes he gave me ,barb xx

Hi Alison, Barbara, Galen and Paula,
I have had bone mets for over 10 years and BC for over 20 years, and I have never had contact with a mcMillan nurse yet. But as I have good support at home ( OH was a charge nurse) I haven’t thought how they could help me in any way really. Yet there have been times when I probably have benefitted from speaking to one, but was too unwell to even think about it…hey ho… We now have a BC Nurse in the WGH in Edinburgh who has recently been appointed a a BC Nurse for ladies with secondaries. She has been most helpful and I have offered my services if there is any lady who would like to speak to someone who has been diagnosed with secondaries already. There was no such thing when I was diagnosed in 1999 and I thought “well that’s it”, but 10 years on and I am still around. My mother always told me I was thrawn ( stubborn)…!! Love to you all, love Val XX

Hi,

I’m in the same area as Galen but under a different oncologist. I’ve found my surgeon and oncologist great in particular and one of the bcn who knows the family (my mum had bc 7 yrs ago) very supportive but I’ve had to make the first move and found that really difficult. The bcn who was allocated to me at diagnosis never contacted me at any point and I only discovered she’d left when I rang to ask for advice after surgery and was getting a lot of shoulder pain - that’s when the other one stepped in and she’s sorted quite a few things for me.

As far as Macmillan nurses go, never met one or been offered one even though I had 2ndries from day 1. When I was in oncology a few months ago, the registrar did see if she could grab one and ask her if there was anything that would help with my side effects and the message came back that it would be a referral to bcn and nothing to do with her !! My onc was on holiday so I saw her when she came back.

I’m fortunate in that my other half hasn’t needed emotional support - he just helps me get on with things but again no offers of help have come from anyone for him (to the best of my knowledge anyway). We get through it together and I’m feeling great at the mo.

GP service - I’ve found a couple who have been ok but you usually see a different one every time so there’s no rapport/relationship building. The nurse who gives me my zoladex jab monthly has been brill and a source of excellent support, as have the nurses at oncology when I go for zometa monthly.

I’m quite lucky in that I’ve felt strong enough for the most part to get on with things without needing the emotional support from professionals to a deeper level if you know what I mean. I have a couple of close friends and they have been brill and I couldn’t have got this far without them.

The other thing that I’ve enjoyed is going to a jewellery class once a week at our local cancercare centre - the hammering and bashing are wonderful therapy (know Galen agrees!) but the ice prevents me going tonight. Again, I was referred by 2nd bcn and onc otherwise I wouldn’t be there either.

Interested to hear on tv this morning that Macmillan say the after effects of cancer treatment and future health problems and lack of support is vastly underestimated…

Hope you all find the help you need without too much hassle but not sure that will be possible !

Liz

Thanks everyone - it does seem a mixed bag nationally and I do take on board that they wait to be approached but i have found that means I feel I have to be in a really bad way before I do that which has only happened once (following a bad scan)I too have some great friends who have been great but there are some conversations I think are best had with a professional as family and friends have their own feelings to cope with.

I saw a young Onc on Wed (think that is 21 I have seen!) and she was lovely - not only had good social skills herself but reminded me of the BC nurses who are based in the Breast Institute at Nottingham rather than in Oncology which is in a different part of the hospital. So that’s an improvement

Like the sound of the jewellry course - sounds very therapeutic

Best Wishes to everyone and good luck

Alison

Hi Alison

I have sent you a private message

Fiona

Hello Alison,

Sorry to hear about your experiences.

I live in Kent and when I was dx with secondary bc the breat cancer nurse phoned me to see what support they could offer me. She refered me to the Mcmillan nurses and they contacted me within the week.
At the time I was very weak and ill. I found it hard at first because of the connotations associated with Mcmillan. However, I had a lovely nurse come out, who was extremely helpful/supportive. She visited me several times and now after my treatment telephones just to see how things are progressing.
She is very knowlegdable and there are things I can ask/say to her that I would not ask family/friends as they are to emotionally involved.
I hope you get the support you want and your practice nurse sounds lovely. Mine is great as I too have Zoladex injections and she always make sure she does them.

Take good care
best wishes
Chris

Hi

When I lived in Plymouth my Macmillan centre onc etc was fab, used to get a visit every other week, and was made welcolme all the time. Am now in Portsmouth, every thing is spread out in different hospitals and they don’t talk to each other. My onc is good, tho slightly odd, but hey who would do his job? I have not been offered any macmillan help at all, even tho I went up and visited, I was shunned-not even a cup of tea was offered, I never went back. I found a local centre The Harbour Cancer Support in Gosport. I pop in for a cuppa and have even helped fund raise.

So I know how you feel, my GP did get in touch with Macmillan who did ring but after talking they decided they were not of any hepl-is that a good thing or a bad one.

I say support you local help/advice centre they need the funds more.