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In August 2014 there was a Q&A Session. Here is that newsletter for download. Q&A August 2014
We welcomed Claire who has recently taken up the post of Staff Nurse part-time at the Breast Unit. Lisa, who accompanied Claire, reported that Katherine Jurkschat who works for Macmillan Cancer Care is hopefully planning to set up both a newly diagnosed information day and open days in the future.
Chris thought this was a good idea as initially you are tied up with all the physical stuff like surgery and chemotherapy and when this is over the emotional effects begin to kick in. Lisa will send flyers if available at that point about these events for the next meeting.
Denise had brought some posters for us to take to our GP Surgery’s advertising the PBCSG details. Thanks to everyone who volunteered to help.
Mandy gave us an insight into her work as a Head Strong volunteer. So far she has done 4 or 5 sessions, in total 6 volunteers provide the Head Strong service in Peterborough and this is still not enough, Mandy is the only volunteer who has not had cancer. For Mandy working for Head Strong has meant she is able to help to make women feel better and share their laughter and experience’s of treatment, family matters or what’s on the telly.
We also discussed our Christmas Party in December and agreed to have a secret Santa bran tub. Other activities suggested were pass the parcel and maybe the Twister game, a themed Christmas Quiz, musical chairs, tying head scarf’s and a memory game and we will ask the hotel to supply the nibbles.
Denise asked for suggestions for speakers for next year, Carole is going to ask an Oncologist if they would come and speak to us, and Val suggested asking Rosie Callcott to do a session on Lymphoedema.
It was agreed Katherine Jurkschat who is based at the Macmillan Centre should be asked to provide a talk on managing fatigue in the New Year.
This meeting was highly anticipated due to the visit of Mrs Shetty Consultant Oncoplastic Breast Surgeon and the turnout was good. We welcomed three new members Valerie, Justine and Julie and in the time before Mrs Shetty’s arrival Denise took the opportunity to explain to them how PBCSG operated and the support given, and Margaret highly recommended the ‘Moving Forward Course’, at the Robert Horrell Centre run by the Macmillan Nurses.
The following items were highlighted:
The City Council are offering 10 free sessions on their ‘Lets Get Moving’ course looking at diet, exercise and weight loss.
The group took part in a health and safety day at Perkins on 30th July ‘One Life – Live It’.
Macmillan Cancer Support are hosting an event on behalf of the Hospitals Cancer Service User Group (CSUG) on 5th September 10am – 3pm at the ‘Quality Hotel’ (formally the Butterfly Hotel) and a light lunch is provided.
Helens 50th Birthday donations raised £270.00.
An Orton Southgate Pilates instructor/physiotherapist is hoping to put together a course for breast cancer patients.
Sadly our Treasurer, Pat Ash has had to give up this post. We send our best wishes to Pat, her Mum & family and Thank Pat for all her time and effort, including coming into Peterborough whenever we needed something doing!
Meanwhile we are grateful to Val who has generously added to her already busy schedule.
We were a smaller group for this meeting, which took place as usual in the Holiday Inn. Our speaker Patricia Mendes had cancelled her visit due to family commitments.
Denise, therefore, updated us about the Strawberry Tea event that Val organised in her lovely garden at Longthorpe. The weather was excellent and 48 people came along to support the event raising over £300 at the end of the day.
We were reminded that the Health and Safety day at Perkins on 30th July ‘One Life – Live It’, needed volunteers willing to spend 1 – 2 hours talking to people about the group and to provide information about Breast Cancer.
Jabeen and her friend Tafseer were attending for the first time and Dovi suggested we all introduce ourselves to them. Dovi said that for her part the trials and tribulations of cancer treatment had led to feelings of being down and coming to the group had provided positive feedback.
Denise said that Mrs Shetty would be coming to the group's August meeting and was there any questions that members would like to put to her?
Vanessa reported that the hospital has seconded an Outpatient Nurse to Breast Cancer Care unit to join the Breast Care Nurse Team.
Concerns were expressed about younger women now being diagnosed with Breast Cancer and GP surgeries failing to pick this up. Some GP’s needed more training as they could be dismissive around what they see as inappropriate referrals even though they are not specialists in this. It seems that Breast Cancer is viewed as age related and unlikely to occur in younger age groups.
We had a good turn out to plan the Strawberry Tea event on 21st June, which is being hosted by Val. In case of bad weather Val has organised a Marquee and there will also be a tom bola stall (donations to this welcome) and space for plant sales.
Val also reported on the Perkins Engine Health Fayre event on the 30th July ‘One Life – Live It’. Members willing to spend 1 – 2 hours talking to people about the group, answer people’s questions, advise on where and how to get further information and to give out Headstrong and Breast Aware leaflets, are needed. Denise will collect the names of those willing to take part at the PBCSG July meeting.
Helen has been dealing with emails that have arrived through our Face book page and was contacted by Yaxley Medical Practice for some of our leaflets. These can be obtained through the Breast Cancer Clinic or Carole. A discussion on whether we should be putting these in all GP Surgeries resulted.
Denise informed the group of the hospitals trust Cancer Service Users Group, which is reforming and is open to all cancer patients. Its purpose is to provide some insight into what is wanted by service users. Val, Margaret, June and Gill agreed to attend and find out more about it.
A session on financial help was suggested which could be crucial when going through cancer treatment and care. Most members felt the process of how and what can be applied for is mainly a mystery. So a session on this might, it was thought, be useful and maybe the CAB could provide an information session.
We began the evening listening to a presentation given by Susan ably aided by Davide. This husband and wife team are the generous donors of our websites www.pbcsg.co.uk & www.peterboroughbreastcancersupportgroup.co.uk and all that entails. They have worked tirelessly in updating and modernising every aspect of the site.
Susan & Davide explained that our face book pages are separated into a public area & a private area. Anyone can see & communicate on the public pages, so family, friends etc. can be invited onto this page. However, the private area can only be accessed by members of this group who are invited to join by current members & the administrator who is currently Susan; family & friends will not have access to this page.
We welcomed back Belinda who is still undergoing chemotherapy. You look good Belinda, just take one day at a time; we are all rooting for you.
Please support our main fund raiser this year. Saturday 21st June, the longest day, Val, Dennis & their family will kindly host our Group Strawberry Tea at their Longthorpe home. We need: Plants for the plant stall; Lots of smallish tombola prizes; Small tables & chairs for use on the day & as many people as possible attending to create a great atmosphere & boost our funds for local cause/s. Please contact Val on 01733 267005 for address & the most suitable times of delivery of furniture. Donation for the Tombola & plant tables can be brought to the June Meeting.
Rita, Denise’s Co coordinator and volunteer contact for the PBCSG leaflet and website, has sadly had to resign due to caring commitments. We would like to give a big thank you to Rita for all she has done for the group over the years. Helen and Pat agreed to step in and replace Rita’s name on the leaflet. Helen will deal with the website and will filter emails and answer/pass on those messages that need a response to Denise or Gill.
Printing of the revised PBCSG leaflet - which goes into the Breast Care Unit’s new patient pack – has been donated by the printers Carole works for. The design, formatting and setting up the leaflet has been provided by Susan from Blue Monkey. We are very fortunate to have the goodwill of these local businesses and are grateful for both their help and support.
Margaret gave us a demonstration on how to make a buttonhole with silk flowers and then provided us with the necessary materials to make one ourselves.
Val is selling tickets for the Strawberry Tea event in her garden. This will take place on the longest day, 21st of June and tickets are £5.00 each. Val will be providing strawberries and cream, scones and strawberry jam plus a cup of tea.
Denise reminded us that our main fundraising efforts for this year will go towards the X-ray Departments Linac Gating appeal for chest and lung cancer’s, at present patients have to travel out of the area for treatment.
Denise announced the development of the ‘Lets Get Moving’ courses that are now based around the city - a free 10-week programme with 2 physical activity sessions a week run by trained instructors.
Jane Mulhearn who runs the Bourne Breast Cancer Support Group is organising a charity ball for the breast and oncology units at Peterborough hospital on 28th June here at the Holiday Inn. She is hopeful some of us will support her in this.
We were pleased to see the return of Psychotherapist Mimi Kilgour. Mimi, who donates her time freely to the group, previously ran a workshop looking at the individual impact of a cancer diagnosis. This time she was looking at how to deal with family emotions.
Mimi used the simple analogy of a boat with everyone close to us in it that is rocked by a sudden wave and the effect that has on everyone aboard. In the same way a cancer diagnosis will at the least cause anxiety and sometimes fear for family, friends and to some extent in the wider environment such as work colleagues and neighbours.
There was a very positive response to Mimi’s workshop providing the opportunity for us to express our feelings and share our experiences. Mimi also provided a comprehensive hand out on Effective Communication Within the Family, giving examples of different ways to communicate. Mimi ended by saying that she offered two free sessions to any member of the Group who wanted it, in memory of her dear friend Carol who was the Groups founder member.
A patient leaflet about a Community Cancer Nursing Pilot was circulated for comment. Vanessa explained that this was a two-year project involving caring for people in the community with a cancer diagnosis.
Denise reported that the Breast Cancer Support Group Leaflet was due for a reprint and that Carole who works at a printers said she'd ask the cost of printing 500 copies.
Our first meeting in 2014 was small due mainly to the weather. Who would have thought it could rain so much and for so long?
This was an open meeting and we talked about a number of issues starting with the problems of using prosthesis after mastectomy and how to stop them falling out of a bra. Some of us had discovered stick on ones, which seemed to do the trick providing we did not get hot enough for them to peel off. You can discuss about stick on prosthesis in the Prosthesis Clinic if/when you require a new prosthesis.
Bras in general are often a problem after breast cancer surgery and there was a mixed reaction to how Marks and Spencers and John Lewis provided their bra fitting service. ‘Eve’ in Oundle had good feedback.
Claire reminded us that in fact John Lewis would be hosting a lingerie evening in conjunction with Breast Cancer Care on 10th April 2014.
We also discovered that a BMI (Body Mass Index) over 32 would mean that not all options of reconstructive breast surgery could be carried out. For those of us wanting to loose weight the City Council run ‘Lets Get Moving’ and ‘Lets Keep Moving’ sessions. Denise, who is currently going to the sessions was feeling the benefit of the exercises and was meeting people with other conditions not just cancer. Sessions can be accessed via a GP referral.
Macmillan Nurses also run ‘Moving Forward’ courses at the Robert Horrell Centre on the Peterborough City Hospital Site, which concentrate on getting life back into focus after a cancer diagnosis/treatment. To attend these contact Breast Care Nurses.
May we wish ALL of you Compliments of the Season and a very happy, healthy and prosperous New Year.
Thank you to everybody who came enjoyed and contributed to make our Christmas-month meeting a happy & cheerful occasion. We missed all who were unable to make our festive gathering due to poor health or other commitments.
We learned that there were too many quizzes and no time was given for jokes, rhymes etc. many apologies to all who brought in contributions but were unable to share them. We enjoyed the food especially contributions brought in by members, and we finished up with our Secret Santa gifts.
Gill & I would like to remind you all that there is a Cancer Services Users Group currently requiring any patients who have been affected by any cancer to say what you thought was good, bad or indifferent about the services/treatments you received.
We have had a wonderful offer from our website owners-Davide and Susan for Blue Monkey services and Domain names. Many of us who have been dealing with various parts of the website and the Specialist Nurses, Claire & Vanessa, shared the information and decided to take up their offer to redesign, update & modernise & make our websites interactive. Davide & Susan will donate their services for as long as we need them as a gift following friends & relatives recently being diagnosed with bone & breast cancer & say they will “…take care of annual renewals.”
A good group of us gathered in the large Essex Room of The Holiday inn (West) for this meeting along with Lisa & Jane our Breast Cancer Support Nurses. We thank Rita and Gill for keeping our monthly meetings going at short notice.
Our Guest Speaker Nicola Mulkeen introduced herself & colleague, Gemma, both Physiotherapists working at PCH who see patients after breast surgery. Nicola outlined some of the conditions they help us overcome or cope with. A question and answer session followed. Next Nicola, ably assisted by Gemma, led us through a variety of Pilate’s stretches & exercises. Pilates is a body conditioning routine that is said to help build flexibility, muscle strength & endurance. It puts emphasis on spinal & pelvic alignment, breathing & developing a strong core or centre & improving coordination & balance. Nicola holds classes at Preston’s Independent multi-disciplinary Physiotherapy & Health Centre on Tuesday evenings between 6 & 7pm generally for about 8 people. There is a short waiting list or she says if enough people want to join she is happy to start another regular weekly class.
Our October meeting turned out to be busy despite Psychotherapist Mimi having to cancel because her Mum was ill. Members welcomed Pat, Margaret, Belinda and Lynne to the group.
Val opened the meeting with the news that Denise had been admitted to Hospital with a heart attack, ended up in Papworth having a stent fitted and was now at home. Being Denise she had remained upbeat about it all but it was a shock to everyone who knows her. At the moment she feels very tired and has been referred to Cardiac Rehabilitation sessions for the next month. Val had taken her a bouquet on our behalf and there was a thank you card from Denise who sends her love.
Gill distributed a draft survey from Healthwatch Peterborough who hopes in time to develop more cancer support services for patients and is currently working with staff from the Robert Horrell Centre on the feasibility of using the centre’s facilities.
Member’s provided some useful insights into wording and layout of questions as well as feedback on types of activities.
The meeting was very well attended and additional chairs had to be brought in, all four Breast Care Nurses attended and were able to clarify issues as well as the doctors, we also appreciate their time.
Welcome to any new members, sorry I don’t know your names at this point to give you an individual welcome but that information is with Denise but we do hope you will join us again and look forward to seeing you at future meetings.
Our next meeting on 3rd October was supposed to be attended my Mimi Kilgour a psychotherapist who some of you will remember her very informative talk she gave earlier this year. Unfortunately she won’t be attending as her mother is ill.
Instead Gill Metcalf would like to share a survey that will soon be going out to cancer groups and carers. The survey is asking about what activities in your experience would be most useful at diagnosis, through treatment and recovery.