Cancer Support Groups

[Shar0n]

Do you find any support from local patient groups for people living with a cancer or specifically a lymphoma diagnosis. Have you found it helpful or do you prefer to access support online?

[Tinkerbellcgy]

Here in Calgary and other parts of Canada there is a not for profit organization called Wellspring which offers in person support activities for both the cancer patient and caregivers. They have a varied assortment of activities, programs and information sessions that one can participate in. It appears to be popular for many.

Having said that, I have participated in a couple of their programs over the years and have found the organization is not a good fit for my needs. I am very much a "cut and dried" type of person who would much rather get to the heart of matters than to pussy foot around. For the most part over the years, I have found that I cannot count on others for support and as a consequence have become my own support. As the saying goes ... "water seeks it's own level" and I guess that is what I do when it comes to support.

ETA: In speaking of Wellspring, I should have stated that Wellspring services patients with all types of cancer as well as their caregivers not just specifically Lymphoma.

[Knitjoni in reply to Tinkerbellcgy]

I highly recommend Robert Miller's Lymphoma survival.com for those with follicular lymphoma..

[Shar0n Volunteer in reply to Knitjoni]

That site gave me great hope and encouragement and I was lucky to find it within three months of diagnosis.

[TezzM]

I am in the same boat as Tinkerbellcgy , there are cancer support groups such as the cancer council which supports blood cancers but most of their resources go to supporting children with leukaemia and associated cancers. And I support that. If I were very ill I am sure I would get their assistance as required. For now I am happy to look after myself and try different things to see what works for me. As I'm sure you all know there are a lot of shonks out there all with a magical cure, which they will art with AT A PRICE. No thanks, the people on this chat line have provided me with more positive support than I can get elsewhere and I am happy to help any of you that may need the same.

[Shar0n Volunteer in reply to TezzM]

I don't feel the need for a local support group myself at the moment as the resources I've found online (including this group) are meeting my needs and keeping me grounded so far - a great group of positive, practical people here.

[Judyhoneycomb]

No I haven't found a group. Most are breast cancer. Nothing for Non Hodgkin lymphoma, especially Mantel Cel.

[Shar0n Volunteer in reply to Judyhoneycomb]

Lymphoma support groups seem to be confined to the cities where I live. Indolent NHL is not as common as some of the more aggressive cancers and it's harder to find groups in more thinly populated areas, I suppose.

[BelindaTupper in reply to Shar0n]

My Hematologist told me Indolent NHL is the most common type....lots more research on this type of cancer, he says. Most cancer support groups in rural NS are usually breast cancer support groups and the Look Good Feel Good workshops. I don't participate in those as I'm pretty self sufficient.

[Tinkerbellcgy in reply to Judyhoneycomb]

Judyhoneycomb, please don't get me started on the fact that most resources, fundraising, media, etc. Is so heavily concentrated on breast cancer. It infuriates me but as the saying goes "that's another show!"....stepping off my soap box now. 😉

[Judyhoneycomb in reply to Tinkerbellcgy]

I wasn't being negative tinker bell. My cancer is very rare in women and I was stage IV. I am in remission, and in a two year treatment which ends in July 2017. I just wish I could talk to some one about symptoms etc. I wish you the best and good health.

[Tinkerbellcgy in reply to Judyhoneycomb]

I know you weren't being negative. When you mentioned most resource groups are for breast cancer, it triggered in me an irritation that breast cancer seems to get the lion's share of resources and/or funding leaving the rest of the cancers to scramble for the leftovers. As I stated previously, that topic is "for another show" but I was simply voicing my opinion which was completely off topic.

[Judyhoneycomb in reply to Tinkerbellcgy]

Thanks for your affirmation and I wish you well. I am in the states. I did get some financial help from Lymphoma society and am ever grateful. I just wish I could find someone with Nhlmantle cel so I could talk about treatment and side effects. Not much reading material on Mantle cel. :o{

[Smileyman]

Yes. Here in the UK I would like to highlight 2 general cancer charities and 2 specialist cancer charities. Cancer Research UK & Macmillan Cancer Support both have very informative web sites, lots of good useful information that supports and tells as it is without causing a scare or over complicating matters. Lymphoma Association and Bloodwise are both specialist blood cancer charities, their web sites are also informative and very helpful. Macmillan and Lymphoma also run blogs like this one!.

Lymphoma have a network of support groups across the UK, I've attended a few meetings and met other patients, always with my wife who has been a bystander but is directly affected by my condition, these meetings have been a great source of comfort. We went to the Lymphoma National Conference last week, a full day of presentations on a wide range of topics - being informed and educated has been a great source of comfort to deal with a newly diagnosed condition that was very much a shock to the system.

However, having forums is also great, not everyone can get to meeting and of course blogs are open 24/7. Asking questions and learning from the experiences of others, being prepared and knowing makes life a lot less stressful than ignorance and the worry that comes. So all are good - just different ways meeting the needs of patients and carers.

[Hidden in reply to Smileyman]

Hi Smileyman, I really wanted to go to the Lymphoma seminar last week, but was doublebooked. I will definitely go next year. We are lucky in the UK but funnily enough I rely on this forum more than any others fir support. There a local support group for Lymphoma 20 miles from me but I don't feel that this would help me because I am a PMA person and I am worried that I will find that more difficult if I meet people who are less so. I like this site because I can spend a few minutes on it every week or so and then switch off. M

[BelindaTupper in reply to Hidden]

I feel the same way, MauraC. Some times it's goid to be able to shut it off.