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In August 2014 there was a Q&A Session. Here is that newsletter for download. Q&A August 2014
Newsletter: Currently Gill sends the newsletter to the Breast Unit for distribution by email. She had proposed that, to save time we, as a group could take over this function. After some discussion it was felt it would be more appropriate for the group to leave the distribution system with the Breast Unit.
Clinical Psychologist Debbie Williams (Birmingham University): To start the session Debbie asked us what issues we wanted to talk about. Two stood out; - In terms of diagnosis ‘family need our support, whereas so do we’ and ‘going back to work when expectations are the same as before’.
Strawberries & Tombola: Val is planning her annual Strawberry Tea event for Saturday 24th June with an addition to the tombola and plant stall of ‘name the Teddy’ competition. She asked if we could bring any tombola gifts to the next meeting when tickets for the event will be available.
Coffee Morning: A Coffee Morning is being held to raise funds for the Oncology Department between 10.00am – 12.00 pm on Saturday 6th May at Mountsteven Avenue Scout Hut (corner of Mountsteven and Lincoln Road)
Hinchingbrooke: This month our Breast Care Nurse Specialist was Claire Hall who told us about the merger with Hinchingbrook Hospital in Huntingdon. The Unit there operates differently from Peterborough as their screening is carried out in Addenbrooks Cambridge, so discussions were ongoing as to how the Breast Care Service will be organised in future. As a result of the merger, the Hospitals will be known collectively as North West Anglia Hospitals Trust.
Screening: The age for screening for Breast Cancer has returned to 50 years from 47 years. Screening is carried out every 3 years from then on until the age of seventy when it is necessary to refer yourself.
Tamoxifen: June had heard that Tamoxifen had been ‘taken over’. Claire said this was not the case, some women are switched over to different medication depending on their medical history during treatment and these like Tamoxifen are taken as a preventative measure for 5-10 years.
Karen Scholes, Oncology Research Nurse Peterborough City Hospital: Karen trained as a nurse in 1990 and works with Dr Macadam on 15 clinical trials at the moment which focus on Breast Cancer. She explained that a clinical trial may test new treatments, ways to reduce side effects of treatment or to control symptoms. They may also investigate the causes of cancer and new ways of preventing, diagnosing or screening for cancer.
Clinical trials: are voluntary and before joining a trial a doctor or researcher must get your permission and ensure that you understand what is involved before you sign the consent form. In Breast cancer trials this could involve taking tissue or blood samples.
Denise asked how the hospital chooses which trials to take part in? Karen said through Dr Macadam’s reputation as lead Oncology Consultant and our nearness to Addenbrooks so that patients and facilities can be combined. Current trials are listed in the newsletter pdf.
AOB: Val is planning her annual Strawberry Tea event for 24th June with an addition to the tombola and plant stall of ‘name the Teddy’ competition
We started our first meeting for 2017 with an information update from Lisa our Breast Care Support Nurse: Vanessa is now the Unit Manager, new Breast Care Support Nurse is Claire Snowden, Mr Goh is now the lead consultant, Mr Abdullah having semi-retired, and supported by Mrs Shetty, Mr Mathew and part time by Mr Rezulski.
Different breast reconstruction techniques are being introduced: a pioneering new approach is using pigskin. The pigskin graft works like an internal bra, cradling the implant and allowing some of the natural droop of a normal breast. The graft, known as the Strattice graft, is pigskin stripped of all pig cells, so that the body doesn’t reject it. This gives a reconstructed breast which sits lower in the chest, giving it a nice curve and making it a much better match to the other breast.
Denise then welcomed Ann from Cambridge and Peterborough Learning Trust who had given up her evening to talk to us about Nail and Hand Therapies. She started with some tips and we tried various varnishes techniques. We also discovered nail ridges tend to occur with age and can be hidden with ridge filler prior to painting the nails. White spots occurring on the nails could be a sign of iron deficiency if all the nails are affected or an indicator of damage if just one nail involved. Denise thanked Ann for coming tonight and we all felt we had learned a lot.
MERRY CHRISTMAS EVERYONE: It was great to see everyone again especially Olive who despite still needing a stick to get around came along with her daughter Sarah. Christmas parties were certainly in demand on Thursday at the Holiday Inn, ours of course was alcohol free but even without booze or music we still had a good time.
We were able to improvise music for pass-the-parcel with the help of Helens phone and Val acted as quiz master on what turned out to be quite hard questions,- the top team scoring only four and a half out of twelve questions. Although Rosemary did point out that most of us have memory problems at the moment. We also tried a new slant on Charades which was drawing the topic (title of songs) which alone was an artistic challenge. There was also a buffet and Val said this time subs would be paid for from PBCSG funds. Gill presented Denise and Val with bouquets from the group to thank them for all the work they have done in 2016. And we finished with a secret Santa gift for each of us.
AOB: Eastern Angles Theatre company at the Key 26/01/2017 at 2.30pm. If you are hoping to come along can you let us know by 20th January.
Phone or email
REMINDER: No meeting in January
Kathy Dickinson the Wellbeing Project Manager came along to give her talk. Kathy is employed by the Hospital Trust and funded by Macmillan Cancer Care. The Wellbeing Centre is a two year project to develop services which provide ongoing practical and emotional support for patients, their families and friends and is part of the National Survivorship Initiative. A number of topics were highlighted top of which was making the Centre visible to the Peterborough population. Lisa said that the Breast Unit recommends the ‘Moving on Course’ run at the centre as lots of times people need help at the end of treatment. Kathy said that once people finish treatment they are given a moving on appointment to talk about the next steps; - common side effects, diet, anxiety, returning to work etc. It is also planned, depending on capacity, that the centre will run monthly tumour specific support groups to provide camaraderie and targeted information and supported by ex-patients.
Hospitals End of Life Committee: A request from Margaret Robinson about the wording of a survey to be given to bereaved people when direct contact with hospital services ends. After discussion a number of suggestions were made which Gill will pass on.
Cambs & Peterborough NHS Foundation Trust - Adults & Older Peoples Services are looking for people interested in attending or being part of a Patient / Carer user group concentrating on local NHS physical health community services. If you would like more information contact
‘Patient View’ have asked for feedback from patient groups about the pharmaceutical industry. Gill said she had looked into this request and had found it was a Europe wide study. If you would like more information contact
We started our new meeting format this month. Claire was on hand from 7.00pm – 7.30pm to provide advice followed by a discussion on the proposed activities at the new Wellbeing Centre and Breast Cancer Care pulling out of training for Headstrong Volunteers.
Claire will also be attending the Ladies Luncheon fundraiser tomorrow as a speaker and will be sharing a platform with Gloria Hunniford, (this event raised in excess £8,000.00 last year for the Breast Unit).
Speaker: Shirley Howard from the Cambridge and Peterborough Learning Trust was our speaker for the evening and introduced herself to the group. She explained that the Trust’s focus was on learning for wellbeing and had become involved as a volunteer as she had an interest in craft work and thought she could put it to good use.
Nine years ago she became widowed and to occupy her time started making cards. From there Shirley has gone on to learn other associated crafts such as paper flowers, stamping, bow making and table decorations - which she was going to show us tonight.
AOB: Val had visited Olive and give her a bouquet from us all. She still has her arm in a sling but is at home, a support worker to look after her for the next few weeks.
June provided a flyer about the Eastern Angles production of ‘Stoat Hall’ at the Key Theatre in January. This has now become an annual event and for members wanting to see their latest comedy the date is Thursday 26th January starting at 2.30pm.
Denise and June who had met with Dave Christian from the CP Learning Trust and discovered that they could provide speaker’s on Beauty Therapy, LUSH cosmetics and up-cycling furniture.
This was an open meeting to discuss opportunities and issues for PBCSG over coming year (2017) and whether to change the format for our meetings.
Breast Care Nurses: Breast Care Nurses have been struggling to regularly attend our meetings due to staff shortages. Claire had contacted Denise to suggest they come along for the first half hour 7.00pm – 7.30pm, to provide the opportunity to answer any open or private questions.
Drop-In Event: The drop-in event at the Robert Horrell Macmillan Cancer Centre on 10th August had given us food for thought. Headstart are planning weekly sessions at the Centre. Talking to the Centre’s project management it was found that they also plans to set up specific cancer support groups including one for breast cancer; which will run for a year. This implied that the new membership for PBCSG would dwindle! read more...
Crokus: Gill had had a chat with the Crokus Group who organised various activities & events for members throughout the year, which everyone present agreed was a good idea worth trying.
Helen suggested an activity every other month such as a pizza or a drink. Val did not think we should abandon the hotel and thought any activities should take place after 8.00pm. Rosemary said if we did we could spend the time doing craft stuff which we could sell to raise money.
We decided to draw up a rough list of suggestions for 2017 taking on board that the Breast Cancer Nurses will always attend between 7.00 – 7.30pm except in January.
AOB: Jaysee had raised £16 from the Rowing Lake walk, which is something we will repeat next year.
Olive has been moved to the Elms at Whittlesey to help with her recovery following her accident. Both Val and Denise had spoken to Sarah, who said Olive can now walk with help and she is hoping to get her home in the next 2 weeks.
Helen is picking up emails off the PBCSG website, Gill will contact Susan to find out how she can access them too.
Like most groups our August meeting was very depleted, just four of us turned up and we were greeted with the news that Olive had fallen down and fractured her pelvis and arm. We wish Olive all our best wishes, a speedy recovery and a safe return home.
Group Funds: Val gave an update; so far there is £1,546.42 in the Kitty.
Walk: Gill and Rosemary had raised an additional £35.00 from their Rowing Lake walk event on 16th July. The walk had been great and took about 1 hour after which, as it was then lunch time, we stopped off at the Boathouse for refreshments.
10th August: There was a drop-in event at the Robert Horrell Macmillan Cancer Centre on 10th August prior to the launch of the new Wellbeing Centre in September.
Doncaster Model for Cancer Care – This is a scheme set up by a cancer survivor, Doncaster council and Macmillan Cancer Support and is made up of a network of volunteers across various age groups. If anyone wants more information or is interested in setting up a scheme in Peterborough contact Gill on
Speakers: It was agreed that the time given to speakers be reduced to one hour from 7.15-8.15pm, including the inevitable question & answer session.
This July Caroline Lansell revisited the group to tell us about current thinking on sleep and being able to relax. Caroline is based at the Robert Horrell Centre and is a Clinical Specialist Occupational Therapist. She explained that she is not an expert on sleep therapy but she had brought along a number of ‘tips’ to improve sleeping patterns.
Denise thanked Val for all her hard work with the Strawberry Tea event and presented her with a bouquet, Gill was also given some flowers for her work on the plant stall.
Val said that the Strawberry Tea had made a total of £408.90p. This was made up from £225 for tickets, £85 from the tombola, £26 from plants sold and £96 in donations. Val thanked everyone for their contributions and making the event a success.
We welcomed Joy Keys back to the group from New Zealand.
Rowing Lake Walk at 11.00am 16th July. Rosemary, June, Denise and Gill confirmed they would be taking part.
Casting for Recovery – Although it was thought it might be a bit late for applications for this activity, Gill will find out the where and when to bring back to the group in August
Our June meeting was small, perhaps because although it was June, the weather was more like April and people did not feel like turning out. Anyway we met to organise the Strawberry Tea event to be held in Val’s garden on June 18th with the hope that the weather would pick up again.
Walking Event: July was the preferred month with either the 9th or 16th (both Saturdays) as the date. It was felt that if we started at 11.00am we could finish with lunch together at 12.30ish. The Boathouse or Dragonfly at the Rowing Lake can cater for our large group and parking is free. Denise asked people to contact other members they knew to find out their preferred date. If people wanted to take on fundraising, sponsorship forms can be provided at our meeting on 7th July.
Reconstructive Surgery: Vanessa gave an update on the Breast Unit and the introduction of new reconstructive surgery which was saving some women from having a mastectomy depending on the position of the tumour.
AOB: The Head and Neck groups AGM will be held on 18th September at the Woodman to which we are invited time to be confirmed nearer the date.
Joy Keys who visited last year from Malaysia is planning another six weeks trip to Peterborough and hopes to catch up with us again then.
Val asked if anyone had seen Rita recently or knew how she was getting on.
Rosie Callcott, Lymphoedema Specialist Nurse was our speaker for the evening. Rosie is based at the Robert Horrell Macmillan Cancer Centre on the City Hospital site, where she has the dual role of leading the Day Centre Team and providing the Lymphoedema service.
There is a Charities Conference on the 7th June at the Kingsgate Centre for anyone who is interested in attending. Details can be provided by Denise
Tombola prizes for the Strawberry Tea were passed on to Val who reminded everyone that she will be selling tickets at the next meeting £5.00 each.
We have looked into the possibility of a Walk, (for those that want to collect sponsorship that is OK to do it personally) followed by a food/social sit down and chat. As the end of June seems busy we can possibly book a walk and food on any of the following days: Saturday or Sunday June 11th & 12th or July 9th, 10th, 16th or 17th.
Please let us know by the next meeting if ANY of you are interested in doing this as there is a lot of organisation involved and give us your preferred dates, we felt Saturdays were more favoured at the last Meeting!
We had an open meeting in April to give us the chance to organise our activities for 2016. These were:-
Strawberry Tea 18th June: Tickets £5.00 Val asked if we could bring items for Tombola prizes to the May meeting. Also, any garden chairs, tables and sun shades would be handy. There will also be plants for sale to help boost funds.
Future Speakers: Rosie Callcott is attending the May meeting to tell us about lymphedema and its effects. Dobbi had been in contact with a GP willing to talk to us about nutritional supplement for later in the year. As more information is needed about current endocrine treatments, a request that a speaker from the Oncology department was made. Croccus Group – we have been invited to attend their AGM at the Woodman with a view to holding a joint meeting.
AOB: A suggestion was made to raise group funds by a sponsored walk around Ferry Meadows. Wellbeing project - Gill no longer attends meetings but update awaiting. Lisa had visited a prosthesis tour in Dublin and had been amazed at the quality of the new products available. Carole asked if anyone would like some shampoo and conditioner for wigs.