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This is where you can find out about all the amazing things going on in the Online Community. It's where you'll find news about events and awareness months; ways to get involved with Macmillan and up-to-date campaigning news from Macmillan HQ.
Last month we had a web chat with Rosemary, our new local campaigns officer, where you told her what your biggest issue is.
The record of all of your issues is below, and Rosemary will be hosting a series of three monthly surgeries to teach you how to campaign at a local level to affect change. Please see my last blog post for more information on times and dates.
As far as I
know apart from this site there is no after cancer support for us considered
'cured'. There are some self-help groups, but since they are outside formal GP/hospital/etc
cycle, is very difficult to take time off work to attend. The latest in my area
finishes at 16:00.
I was diagnosed with lung cancer five
months ago and have still had no treatment for the cancer nor the symptoms I
have. There seems to be nobody qualified to give me my results and when my GP
sent me to hospital for symptom control they sent me home after telling me it's
all part of my condition and I basically have to put up with it.
I don't think some GPs care
enough. I think my pal might have stomach cancer but I haven’t told her
anything about my concerns. Her Dr. has referred her for a scope and she
finally got one on 9 September, the waiting times are so long for these things.
Waiting for results is my biggest
issue. I had to ring around the hospital to find my ultrasound results last
year. A nerve-wracking experience!
waiting times - three weeks until my clinic appointment even to discuss chemo?
Lack of cohesion at the hospital - I have a pleural effusion as well as cancer,
which seems to be being ignored; and money worries.
I am concerned about the lack of
support for cancer survivors. I am a survivor myself and would benefit from
support and the opportunity to meet other people in the same situation.
I had a
kidney removed in July with an aggressive tumour and was sent home 2 days later.
I saw a consultant who didn’t say much, just ‘we’ll scan you again at Christmas.’
I feel alone, scared and depressed but my GPs just say it takes time.
Obviously it’s important that
funding for support is provided for people going through treatment. But there
are now a significant number of people (and thankfully this is on the increase)
who are surviving and left feeling isolated and in the dark, to deal with
feelings, flashbacks, physical difficulties and money worries not to mention a
lack of confidence.
support is what's needed. For example, I saw my sister-in-law yesterday - she
told me when she was sick, sometimes she could only eat chipsticks. Made me
feel a whole lot better about my own eating problems!
I believe one of the biggest issues
I have had since my diagnosis is the wait between diagnosis and treatment. I
understood that quick response to cancer is key to recovery.
issue we have might seem strange to some of the posters, some people do not
want to be deluged by too much information, it actually made us feel
overwhelmed and even more frightened by everything that was happening with my husband’s
leukemia. I think at the beginning the doctors need to find out if you want so
much information or you should ask if there is something if you need / want to
know, as we are all different.
I didn’t ask for cancer and now have
physical problems as a result. I still feel like I’m constantly made to jump
through hoops and the stress it causes is overwhelming.
I find that
people struggle to understand and comprehend how I feel and think that four
years on I should be 'better,' 'over it' and have put it to bed now which is so
far from reality.
I find travel a problem being a
pensioner. I find it expensive to drive the 60 mile round journey to hospital and as I live in a village with limited
transport I have no option but to drive. We are just over the threshold for
financial help but going as often as we do it is getting so expensive.
car parking is my biggest issue.
Following a cancer survivors course
online I started a website for the members who take part and this makes such a
tremendous difference - to be able to chat with people who REALLY understand. I
wish I could do this more frequently and face to face close to where I live.
It’s such a
pity that most of the courses etc are in London.
My course was excellent. I was on
the first of the pilot courses and enjoyed talking to people but found the
downside to be that no ongoing contact was offered to set up my own site to
enable members to keep in contact.
really bad for saying this because thankfully my husband was treated successfully
and has been in remission for 5 months now. But its now that we are struggling,
we are like strangers and it’s really hard.
Its long term support that I have
issues with. I’m 6 years post treatment, no longer under a consultant and feel
out of the loop financially and personally.
melanoma and after a neck dissection was told I needed radiotherapy. I was also
told that they would make an appointment to see about trials. When my
appointment arrived I waited 2 hours to be told that as I had radiotherapy I
wouldn't be eligible for trials. Surely they should have known this before
making me an appointment?
We all, irrespective of cancer type,
treatment or prognosis - are let down by a system which focuses almost
exclusively on the clinical aspect of our cancer. The clinical aspect is
important but we need a bit more and - ideally - we, as patients and carers,
should be supported and empowered to do more for ourselves.
Please see our campaigns section for more information about any of our campaigns, and ways that you can get involved.
I was Diagnosed with Bowel cancer (adenocarcinoma) in February 2011, admitted to the Ulster hospital, Northerb Ireland in early April. I spent 6 days in hospital and felt very well. Well enough to go home. A week later I had to be readmitted because my bowel stopped working altogether. Another 8 days in Ulster hospital, went home with everything working well. Chemo in June until now (almost finished) My experience of hospital and cancer services in Northren Ireland was fantastic. All the hospital staff from the surgeon to the domestics were amazing. No complaints at all 100% excellent. I even got a hug from my Oncologist at my final appointment, how good is that...........Mike M
I Have Hodgkin Lymphoma 3b and cant cope soo violent sick and dread next session They keep giving pills but it dont work
Since being diagnosed with bowel cancer a year gone september, and now having secondaries in her liver and lung,my mam has only had one bad incident and that was with a registrar who more or less told us to go home and phone macmillan. This was before he had a word with the consultant , who then said that they were gonna try another type of chemo. Apart from that incident, my mam has been treated amazingly, the nurses on the day unit and in outpatients are the best we could ask for. The oncologist, is lovely and thankfully he now has a lovely registrar, also she is doing well on this chemo . Sanath1131
My biggest issue is the waiting. I first went to my GP in January but all these tests etc. seem so far apart. Almost 6 months later I am booked in for my first treatment.
I hope it is OK to mention this here as i am a little upset.
I myself have ME CFS ,My father has lymphoma a rare cancer . I also know many people who had ME and have died recently from cancer. I think it is nasty to use the fear of cancer to ridicule those who have ME or any other disease or condition. Similarly I would not use any condition to ridicule cancer
When I feel sick I Google my symptoms and usually find out I have cancer,
I don’t find this funny at all.
find it at
Coincidentally my father who does not have ME has developed a rare incurable lymphoma recently, I myself have ME several others in my family are severely ill with ME
. I am constantly disappointed with this so called caring professional who do not seem to care if there names crop up alongside spiteful jokes and insults and degrading propaganda most of it against ME CFS . I also tired of there excuses.
the article says
We wish to thank rofessor Simon Wessely, Professor Ingvard Wilhelmsen and members of Network for Psychiatric Epidemiology (NEPE) for valuable comments in the process of this study. jadajada!
I have been diagnosed eventually with Pseudomyxoma Peritonei, I know it is very rare but it has taken 4 months to diagnose. Now we have a diagnoses another lot of waiting starts to get to the appropriate hospital for treatment (only 2 in England) that deal with it. I appreciate the fact that I am not alone with cancer , but not getting treatment is quite worrying.
I'm sorry to hear about your diagnosis - it must feel very isolating to have such a rare cancer type. I see that you have found the group on our Community for your cancer type and I hope that you can get some support from others with similar experiences. You may also wish to join some of the Cancer Experiences groups to discuss things with people with all different cancer types.
I can understand that the wait for treatment must be very worrying. If you have any questions or just need to talk to someone, you can call our Macmillan Support Line on freephone 0808 808 0000 (Mon-Fri, 9am-8pm).
If you have any questions about our organisation our Macmillan team would love to hear from you
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© Macmillan Cancer Support 2010
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