Hello everybody,
I hope you don’t mind me posting.
Back in April, I arranged a hustings for Breast Cancer Care with my local MP candidates to discuss how government (both local and national) could help improve the lives of those affected with breast cancer.
I’ve now been invited to meet with the elected MP at the beginning of September and this is a real opportunity for me to let the MP know about the issues facing people with bc, and to encourage him to take action.
I want to make sure we’re representing the views of people with breast cancer in the meeting and to inform the MP of any problems you may have faced.
I’d be really interested to hear your views about what you think needs to improve for people living with and affected by breast cancer, nationally or locally in Greenwich (the main local hospitals in and around Greenwich are Queen Elizabeth Hospital, Woolwich, Queen Mary’s Hospital, Sidcup, The Princess Royal Hospital, and University Hospital Lewisham).
In particular, I am keen to source views on:
· When you were diagnosed, were you offered a referral to a fertility specialist? Did you have any problems accessing fertility treatment?
· If you have finished treatment for breast cancer, were you given enough information and support during and at the end of your treatment?
· If you have been diagnosed with secondary breast cancer, do you have access to a specialist secondary breast care nurse?
· If you have diagnosed with secondary breast cancer, have you been offered a referral to palliative care for pain management?
· Any other comments you have about your care or treatment
If you are able to offer any insight into the above, I would be so grateful. It is such an important opportunity and I want to represent as many views as possible.
Thanks again and look forward to your thoughts.
Take care,
Jackie
I am so sorry to see that this post seems to be buried with in the site, am sure many have opinions needing to be heard.
For myself I would have liked more support when finished with treatments - was expected to be ok, but was terribly fatigued.
Struggled with return to work, employment issues, (had had financial provisions in place pre-diagnosis so thankfully for me this was not such a massive hit, but still a hit).
At 50 fertility not a consideration. I found this site, ACAS, Macmillan and my union (not militant - but needed employment advice & help) all worthy sources. Also have heard though not used - Maggies Centres help with practical support / advice with claims, only assistance i have had is the prescription exemption, dont know if other claims could have been made.Terrible times when so fatigued too.
I was slow to access the support on these sites, found alot of places wished to give leaflets / websites, which i didnt have the capacity to plough thru, and only have my children in the household. Did not consider using friends for these functions - too personal & just didnt think of them in that role.
The lymphoedema nurse from my local unit has resigned & will not be replaced. Her advice support has been amazing, and I believe she has helped prevent me develop full blown lymphoedema with the advice and support she has given me. My arm persists in feeling more swollen (though her measurements showed a 7.5% difference at greatest) and therefore technically not lymphoedema. Without her assistance I may not have been able to continue to technically NOT have lymphoedema. Her role was seemingly extra to requirements - how can they say that about prevention, she cannot prove how many she prevented.
Good luck with your meeting, i hope others find you here
I was dx 2 years ago and was initially treated at Lewisham and I do have a couple of things to say about the treatment there.
I found a lump and was referred to the bc clinic at Lewisham. This clinic is run by the Guys team who come over to Lewisham twice a week I think. The clinic itself is mixed where people with quite different medical issues sit alongside people with bc and bc queries. The team were 99% sure it was not bc after mammo, us and biopsy. I was advised to have a sugical procedure to totally rule bc out which I had up at Guys but returned to Lewisham for the results. Shortly after the procedure I was concerned about the wound and the surgeon advised me to return to Lewisham so that he could check it. The receptionist upon my arrival was very rude and dismissive of me, but I did get to see the surgeon and all was ok.
When I went back to have the dressings removed and to get the results I waited nearly 2 hours for my appointment. During that time I heard the receptionist speak to another woman who was also waiting and told her that she would make sure she was seen first in front of everyone else who had an appointment at the same time.
By the time my name was called I was frustrated about waiting so long and hearing these comments. I was totally unprepared to hear that I had cancer. After that appointment I requested that all my treatment be done at Guys. I was prepared to travel up to central London in preference to going back to that clinic.
I think that there should have been some acknowledgement that if someone is about to be dx with cancer they should not have to wait so long and there should be a separate area for cancer clinics.
I also feel that there is not enough support when active treatment ends. I had a lot of fatigue for quite a while after rads. I think I returned to work to quickly after WLE and worked through rads. This was partly to keep some normality but looking back I think I should have taken more time off. Going forward it would be great if employers were aware of the post treatment issues and that one could take additional time off when things got too much. Everyone so quickly forgets that you have this treatment once you are back at work full time.
I hope your meeting goes well, do please let us know.
I am very angry at our treatment of breast cancer paitiants like myself here In USA. I recently under went a lumpectomy . I am stage one .
Upon my day of surgery, I am told I will be having needles inseted into my braest to inject die for finding my lymp nodes. They will be numbing the area. Then a larger needle will be peirced in to the tumor for surgeon to easily find. I begged them to please put me to sleep for this. They said they cant ?? I found NO reason for this what so ever. I spoke with other cancer paitiants about this and they all concluded that they recieved the same treatment in the areas that they lived in. Im curios is this the norm all over the world? Can it not be changed? We are going through enough pain and emotional sufferring as it is. This was VERY painful to say the least!
I want to start a campaign to stop this. A petition or something. Im not good with wording things . But I want to do this. Please can you give me some aid or advise on this matter? How is lumpectomy done in other countrys? Please contact me.
I can not attend this meeting. Will be in radiation at the time. But I am reaching out for assitance if you can please.