Home of the Hastings and Bexhill Area Breast Cancer Support Group
|
Home of the Hastings and Bexhill Area Breast Cancer Support Group |
|
These reports will
help members unable to attend a meeting keep up with what's been happening, and
give non-members an idea of what we do at our meetings. January meeting 2011 Due to illness, Gloria was unable to host our first meeting of the year and so it was held at The Conquest Hospital Social Club. Only a small number attended, some sent their apologies, while others would rather not meet in the hospital grounds as it reminded them too much of their visits for treatment. Just in case Gloria was unable to host our March meeting, alternative meeting places in Hastings were discussed, and it was left that one or two people would find out details of a couple of possible venues. We realised that we have been very lucky throughout our 30 year history to have had members give up there homes to the group. A place to have our annual meal out together was also discussed and it was left to Pat to make enquiries at The Wheatsheaf, Little Common for March/April time. Fundraising ideas for the group were also discussed. Heather reminded the group that she is still collecting bras and prothesis to send off to those in need in Romania. One of our members showed a card that she had been issued with from the hospital, stating that she had had glands removed from the armpit and was therefore at an increased risk of developing Lymphoedema, other members asked if they too could have copies to carry with them. We were pleased to welcome two new members to our group, and started off with a quick ‘round robin" which some new members find useful . We have members who had their cancer 10 or more years ago (what could be greater positive message than that!), some who are embarking on reconstructive surgery, those who have lymphodema problems, it’s a great way for new people to We had apologies from some members who for one reason or another couldn’t make it to the meeting, and some lovely Valentine’s ginger biscuits from Cynthia sent with her love. Travel insurance was again discussed. Kate told us that she had spoken to the Breast Care Nurse at the hospital about a trip she had cancelled to USA after having been quoted an unbelievable £1700 for her travel insurance!!!! The Breast Care Nurse gave her Macmillan’s latest leaflet on travel insurance and also sent a batch through to the group to distribute to our members. A couple of pieces of information forwarded to us by the Breast Care Nurses were read out. A new Breast Consultant will be starting in April, working between The Conquest Hospital, Hastings and DGH Eastbourne. If anyone has financial difficulties or need some financial guidance please ring Macmillan 0808 808 00 00. Grants are available, but like so many things which have been hit in the current financial climate, Macmillan now have a strict criteria. A new booklet on financial information for 2010/11 has been published by Macmillan and is available from then or can be picked up in the Oncology waiting area at The Conquest hospital. A new set of cards had been sent through to the group for members who wished to carry them. These cards state that the carrier has had lymph nodes removed and therefore, blood pressure, blood samples and injections are not advised on that arm. This lead to a discussion as to whether after a number of years it is "safer" to have blood pressure etc taken on the side where lymph nodes have been removed, which concluded with it being advisable to leave that side if at all possible, however long after surgery. A meal out for the group was briefly discussed, The Wheatsheaf Little Common was decided upon sometime in May. It was suggested that the group pay for the meal, but if anyone wanted to pay themselves, or give a donation towards it, that would be great. One member noticed that although our group have a 1066 pink ladies poster up at the hospital, giving our website address, there was no other information available, telelphone numbers etc., for those not on the internet. It was decided to produce a new poster. Carol gave us the date for Nin filed Carnival this year - Saturday 16th June, and asked for donations towards our stall and offers of help, as this was one way we annually raised money for our group. Sorry no notes were made at this meeting We were again happy to welcome a new member to our group and the return of a couple of members who for various reasons haven’t been able to attend meetings recently, making about twenty in all. There were apologies from some and news updates of those who have not been well recently or undergoing treatment. A contact list was sent round for members to update, Gloria and Pat , as hosts of the meetings, had decided on dates to meet for July to December and these will be printed and ready for the May meeting with the updated contact list on the reverse. As it was decided at last months meeting that the group would again sponsor two members to attend Breast Cancer Care’s London Fashion Show, a list was sent round for those wishing to have their name put into the lucky draw. Members wishing to pay for their ticket were reminded that payment needed to be in by our June meeting, but if anyone had any problems with this to speak to Janet or Jean. Travel Insurance came under discussion again as members undergoing treatment continue to find it difficult to get insurance cover – especially those wanting to go on a cruise. Macmillan produce a leaflet with several contacts on to help with this. It was decided to order some leaflets for group meetings especially for members who don’t have internet access themselves. Lymphoedema,a painful problem which sometimes develops after removal of lymph nodes during breast surgery, was highlighted and Pam was trying to arrange for a lymphoedema nurse to speak at one of our meetings. One member had sent off for some information from the Lymphoedema Support Network and was wearing a charity wristband embossed with "Lymphoedema matters" to make others aware of the problem. She also showed us a blue hospital style bracelet, which could be purchased and worn when attending hospital to alert medics to the Lymphoedema problem that the wearer might have. It was agreed that the group would purchase some of these bands for members who felt that they would like one. The personal issue of sex and vaginal dryness as an aftermath of treatment was discussed, and it was pointed out by a couple of members of the group, that they had approached their GPs who had made recommendations which had helped a great deal. A group member undergoing reconstruction at the moment spoke about what had been done so far and the next procedures. It is fantastic that our members feel that they can share with us all their experiences, including personal ones, its great encouragement for others and allows either open discussion or a more personal one to one chat with someone who may be experiencing the same thing. Thank you everyone for the part you all play in supporting each other. Other items mentioned Our stall at Ninfield Carnival The meeting ended with a couple of amusing e-mails being read out, a raffle, and a cuppa and a chat. Just over 20 attended this meeting, some months we have as few as 15 and other months it can be nearing on 30! As always we were happy to welcome some new members who had come to join us. We also welcomed Mandy Hawker, a representative from Amoena, who came along to speak to us about the job that she is now doing for this company since she left the Conquest Hospital a short while ago. She spoke to us primarily about prothesis and answered questions. We then continued our meeting and at coffee time Mandy made herself available for consultation in a separate room allowing members privacy. Mandy had also brought along copies of Amoena magazine – a very informative magazine for those who are going through or have undergone breast cancer treatment. Articles that vary from personal relationships after breast cancer, facing breat cancer the second time round, bilateral surgery, reconstruction, tips for controlling side effects of hormonal drugs, facing breast cancer alone to hair and skin care during chemotherapy. The magazine also offers the opportunity to write in and ask questions, and for others to reply and give their advice/experience. The group were very pleased to receive these magazines as Pat had laid out all her back copies at the last meeting and they had been very well received. She had also arranged that a number of copies be delivered to the group at each publication. A new breast surgeon has been appointed, who will be working across both the Conquest and Eastbourne DGH, it was agreed that a letter of invitation to one of our group meetings would be sent as he had shown interest in getting involved with support groups, and had been involved at his previous hospital. Janet reminded everyone that tickets for the London Fashion Show (organised by Breast Cancer Care) needed to be booked and paid for in June. Members who have not previously had a "free" ticket for this event, paid for by the group were asked to make sure their name was added to the list for a draw at the June meeting 2011 will be especially exciting as two of our members Debbie and Clare have both been accepted as models for this years show, and because of this Breast Cancer Care have said that hey would make sure that any table we booked would be near the catwalk. Congratulations Debbie and Clare! Gloria told everyone that she and Jane, who have been running Headstrong for the last five years, were very upset to hear that Breast Cancer Care want to drop Headstrong at the Conquest. A discussion of how their training could help future cancer patients took place. Following last months meeting Pat had ordered a number of Lymphoedema Alert bands for members who wished to have them, as these proved to be very popular it was agreed to order some more to keep and be available at future meetings. Lymphoedema hospital alert wrist band – "The LSN has produced a useful plastic lymphoedema alert bracelet which is very helpful for patients who already have lymphoedema and need to go into hospital for any reason. It is also useful for those patients ‘at risk’ of developing the condition… and who wish to stay that way!Wearing the bracelet during a stay in hospital will help to alert medical practitioners to the condition and will help to ward off unwanted attempts to take blood pressure readings and injections, etc. The bracelets have adjustable fittings and will fit most arm sizes. Should patients wish to wear a bracelet on a swollen leg, two bracelets can be clipped together. The wording on the bracelet states: ALERT:LYMPHOEDEMA – No Blood tests, Blood Pressure, IV Access or injections in this limb." Other items discussed Pat gave news on Cynthia’s progress A full house this month and the room was buzzing. Claire told the group
all about her and Debbie’s experience so far with Breast Cancer Care since being
selected as models for their prestigious fashion show in October this year. We
hope they will find some time to write all about it, so that we can add it to
our website and follow them through this exciting event. Pat reported that following last months discussion on supporting men with breast cancer, we now have a page for men on our website. The latest travel insurance leaflets from Macmillan were freely available for those interested, and Trisha reported that had just obtained a very reasonable annual travel policy from Age UK travel insurance which applies to the over 50’s. Lymphoedema and where to get help locally was also discussed as a former member of the group had contacted Pat to ask for some advice. Members recommended a referral to The Plaza centre in Hastings. Although Gloria was unable to act as our host, she was kind enough to offer up her home so that the meeting could still take place as usual. We welcomed four new members into our fold and had apologies from some of our regulars who were absent. A whole range of items were briefly discussed or mentioned
Carole reminded everyone of Ninfield Carnival dates and help needed manning our stall, she also announced, that as circumstances had changed, she would no longer be able to organise the stall at the Carnival in future years and asked if anyone else would like to take it on. Pat spoke about an offer to raise money for the group, which had been received by e mail, and that there would be a meeting with the person concerned to find out more details. It was agreed to make up a wish list of things that we would spend our money on if we were lucky enough to receive any. A book was passed around for members to write down their ideas. After this tea, coffee and biscuits were had, which gave individuals an opportunity to chat with our new members. A full house and we welcomed Karen Gaughan from Comfort and Joy as our guest. Karen has worked for 9 years as a practice nurse, has personal experience of breast cancer and has now set up her own business providing mastectomy wear that is both pretty and practical, that is mobile and can be brought directly to the door for a home visit – a definite bonus for those whose circumstances don’t allow them to visit the usual stockists of suitable lingerie. She showed us a range of items including bra’s, pants, swimwear, nightwear and tops, but also partial shapers for those who need to correct the shape of their breasts after surgery Having spoken to Mandy at a previous meeting Pat had had her new contact prostheses from Amoena fitted and fully recommended them. Debbie attended the meeting and told everyone the latest news about herself and Claire and the Breast Cancer Care Fashion show. Woman’s Weekly is producing an article in September, which she was interviewed for. Eighteen members of the group will be attending the Fashion Show this year and Breast Cancer Care have assured us that they will be giving us a table fairly near the catwalk so that we can encourage Debbie and Claire as they walk down the catwalk. Pam pointed out
Other items:
Sorry no notes were taken at this meeting. What a celebration! October can be the month which we all dread, Breast Cancer seems to loom up everywhere, magazines, posters TV, which of course is necessary, making others aware, but for some of us the facts and figures produced are all to much of a reminder of what we are going through, or have been through. However this year was a real celebration for our group. Two of our members Debbie and Claire were chosen as models at the prestigious London Fashion Show run by Breast Cancer Care. Sixteen members of our group attended the afternoon show, kindly organised by Janet, and were lucky enough o have tickets right besides the catwalk. Debbie and Claire were magnificent as they strutted their stuff on the catwalk and as you’ll see from the photographs looked amazing. (We are hoping to get a write up from them for the site) A week later we held our annual "Pink Party", well a more relaxed meeting, with pink as our theme and Debbie and Clare popped in to give us a personal account of their experiences. We are all so proud of them, what they have achieved since being diagnosed, and they have really put 1066 Pink Ladies on the map. We played a couple of games as well as discussing some points of interest. During the meeting we discussed the best days for meetings to be held in 2012, and after discussion with Pat and Gloria, our hosts, it was decided after a vote to keep the arrangement as we’ve had it this year. For the first six months Hastings meetings will be held on a Wednesday changing to Tuesday for the latter half of the year, and Bexhill meetings will be on Tuesdays until June and then change to a Wednesday, this is in an attempt to make ourselves as accessible to as many people as possible. Sorry no notes were taken at this meeting, but thanks were given to the Radiography Team from the Conquest Hospital who during October, made cup cakes, had raffles etc., and raised money for our group. December Meeting 2011 Party time again, as it was nearly Christmas. After starting off with mulled wine or hot spiced apple, we played a few games, interspersed with any business needing to be dealt with AND LAUGHED A LOT a great ending to the year.
2009 reports ~
2010 Reports
|
