111101 Recovery Club Newsletter

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NEWSLETTER NOVEMBER 2011

Trish Sutton Liaison Officer

0173636938207402792558 [email protected]

Dave Squibb Liaison Officer01726 86276607914 040636 [email protected]

1 st November

Hi everyone I hope you are all well. As you are aware Dave decided to hand over the role of the newsletter to me and I hope I will be able to pass on all our news to the same standardthat he achieved. Some of you, already know I m the quiet one of the group :o)

I am always available if you have any ideas or concerns and I will try my best to guide youto the right person for support. I hope that you would be willing to share any ideas that willraise our profile to be able to reach others and make them aware that the Recovery Group isavailable for new and old patients.

For our first meeting this month we welcomed new comers Dale and his wife Cathy to thegroup. Dale shared with us that he had only recently finished treatment and expressed someconcerns with us.

Sadly we must share with you the sad news that our beloved Maggie passed peacefullyaway at home with her husband Jeremy and family present.Jeremy had kindly sent an email to Dave the following morning to say that Maggie wished topass her thoughts onto everyone and thank them for all their support.

Most members of the group who meet regularly attended the beautiful Celebration Servicefor Maggie at The Church of the Immaculate Conception in Penzance on the 31 st October.The service was conducted by father Philip Dyson who we all felt delivered one of the nicestand emotional services ever.

As you can imagine the church was packed with everyone huddled together all wearing

something bright to celebrate M aggie s unique persona. As the funeral cortege preceded down the road the Samba Band Maggie belonged to, playeduntil she arrived at the church and Brian who witnessed the procession said it was wonderfulto listen to.

At Maggie s request the service cel ebrated her life and it was a privilege to have been thereand listen to those stories shared by her family. One in particular was by her brother in lawwho described a little about Maggie s life.

Maggie was born in Rochdale Lancashire and moved to Penzance in 1973 as a single mumwith her daughter Vicky. She spent a lot of time at Long Rock where it became an

inspiration for her many talents. Maggie was always a very independent woman with the
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most amazing infectious and wicked sense of humour that we all loved..... It is this that wewill always remember Maggie for.Maggie worked in the library and at St Justin Jewellery. Here she made lots of new friendsand enjoyed the freedom to express her creative side. In 1999 she married Jeremy andbecame a grandma to her beloved Grace in 2003.

5 years ago Maggie s illness first started and throughout all the years that followed shealways dealt with whatever came her way with dignity, strength and love topped off even tillthe very end with her wicked sense of fun.

Following the service some of us went to the Queens Hotel where I was able to mix withsome of Maggie s friends and learn more about her.

Maggie had chosen What a Wonderful World by Louis Armstrong for her final goodbyemessage.

http://www.youtube.com/watch?v=54zAKGJsLp4&feature=share

At the funeral it was lovely for members of the group to see Sue Tregear who is one of ouroriginal members back when it started some 5 years ago. We were pleased to hear she isremaining well despite her recent surgery.

Here is a message from Dave about Maggie s involvement in the group.

We first met Maggie in 2007. Her ability to organize became apparent when she took overfrom Emma, the task of producing our newsletter, thus paving the way for our group to bemanaged by our members. She also became involved in The Keep cancer care in Cornwall campaign. How ironic then that Maggie was diagnosed with upper GI cancer resulting in herreceiving treatment at Derriford.

It was around this time that I became aware of her determination and courage. Herwonderful sense of humour manifested itself when she was being transferred from Derrifordto West Cornwall Hospital following a massive operation, and I received a text messagesaying here I am in the back of an ambulance with a dishy young paramedic and I m too illto do anything about it!

Maggie was always keen to stress to our members that her abdominal cancer wasunconnected to the head and neck cancer that she had undergone.

We have lost not only a very respected member of the group but also a much lovedfriend. Dave

I think we would all support that Maggie was an exceptionally special person and for all of those privileged to have met her she will be deeply missed but never forgotten.

We have decided to donate 100 to FOSS..(Friends of Stennack Surgery towards specialistequipment for cancer patients).
http://www.youtube.com/watch?v=54zAKGJsLp4&feature=sharehttp://www.youtube.com/watch?v=54zAKGJsLp4&feature=sharehttp://www.youtube.com/watch?v=54zAKGJsLp4&feature=share


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We were very pleased to have Hannah Cary who is one of our Specialist Dietician-Oncologyand Palliative Care staff join us. We discussed in detail the enormous and emotive subjectof food and eating and how they impact on our social and family life. Difficulties discussedwhere the lack of eating, eating during treatment and later during recovery and themorbidity of this on some of our lives. What became very clear and more importantly is thehuge impact it has on family life and all family carers and children, and not just the sufferer.

Yet again the issue of the psychological impact head and neck cancer treatment has and thereal need for this aspect of care to be looked at on an already stretch health service here inCornwall. However, following a chat to Mr Wilde he is now looking into this for us.Hannah emphasised that most people cannot understand the major impact about food andits pivotal effect it has on family life ...its social; it s very emotive and is very underestimated the effects this has on family life.Hannah shared with us that lots of support is given about cancer and the effects of treatment, but feels like all of us, particularly for head and neck cancer suffers, this area of after care is under looked. She suggested that the how to deal with the problemsassociated with food and eating needs more thought and research. We all agreed that weneed psychological support at the beginning and throughout.... and that all of us need tolearn how to manage and live with eating and the potential struggle that some associatewith this. We found it interesting how for some, certain foods were easy to eat and yet forothers it wasn t and this just highlighted how individual the effects of treatment can have onboth sufferers and care r s. We then went onto discuss the physiological effects and how oursmell senses and taste buds are damaged by treatment and how for some these effectswere minimal and for others are still an ongoing issue of concern.

Awareness Month January and Clinic Posters

In our last newsletter we were concerned that very few new patients are joining our groupand the suggested organising a support group awareness month in order to attract some of the hundred or so patients diagnosed each year with our type of cancer. This is nowscheduled for January and new posters and leaflets are advertised in clinic. If there isanything you would like to see on the wall please feel free to contact us.

Please noteThe group has been running now successfully for over 5 years and for some of you the timemay have come where you no longer wish to receive the newsletter. Therefore please wouldyou return this email if you receive this by email and if you receive it by letter please giveme a ring so that I will continue to keep you on the mailing list. Also this is so that we havean up to date list of members. `

15th November

A few met at the County Arms where we chatted about lots of nice things as well as some


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sad news. We were pleased to hear from Margaret that Bill is continuing his dive treatmentsat Derriford and has made some new friends and his spirits are high.

But we were sadden by the news that Janis is requiring treatment and we would like to wishboth Janis and Brian much love and to let them know we are thinking of them at this

difficult time as Janice starts treatment next week. As Christmas draws closer we would like to take this opportunity to wish you all a HappyChristmas and New Year and look forward to seeing you all soon.

14 th December Christmas meal lunch time at Carlton Hotel,Truro

3 rd January Jacqui Williams Confirmed.

Please feel free to come to any of our meetings. We are always glad to meet newfriends .

PLEASE LET ME KNOW IF YOU COULD RECEIVE THE NEWSLETTER VIA E-MAIL

We'll leave the last word with Maggie please see attached back page of bookletxxxxxx

RECOVERY CLUB MEETINGSFIRST AND THIRD TUESDAY 11am-12.30pm

COUNTY ARMS, TRURO


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111101 Recovery Club Newsletter