This page was started to mark the countdown to our first public meeting and the build up to it as we go through organizing it all and then the events that carry on afterwards. There will be times when it is updated regularly and other times when things are quiet, but as things change we will amend this page. It will be done in reverse order so that the first paragraph will be the current one.
4 November 2015
I apologise for not updating in here for a while but i must write about our meeting tonight. Our speaker tonight was Jo Gregg of Macmillan Cancer Support and she was FANTASTIC tonight so thank you sooooo much Jo. I then worked out another way of using social media to promote our group and we had the most hits EVER on our website today so hopefully we have reached out to more people today which may boost our attendance but more important enable us to reach more people to help, fingers crossed here for that, thank you everyone for your support.
16 May 2014
Problems getting your injection prescriptions filled
It has come to our attention that the guys using Caverject injections were unable to get their prescriptions filled, so I (Bob) went to get mine to see what has been happening. Of course i hit the same problem and was told they cannot get them from Pfizer as they have production problems.
So I rang Pfizer to see what the issue is and it turns out they have problems with their manufacturer and are switching to another manufacturer and there will be non available till early 2016, fat lot of good that is to us. So i searched online for an alternative and found a company called UCB Pharma that make an alprostadil injection kit that does the same job as Caverject and it is available on prescription from your GP and my pharmacist at Manor Pharmacy checked with their supplier and they can get them.
It is a different delivery system to Caverject though so you need to see your GP for a prescription for the "Starter Kit" which is the injection kit and then you need repeat prescriptions for the refill kit. These come in 10, 20 or 40 micrograms sizes but due to demand they do admit to delivery issues with 10, sometimes with the 20 but the 40 is fine, so personally i will be asking for the 40 so as not to encounter these delivery issues.
I do hope that this information is helpful to you all and feel free to pass it on to anyone else that you know that is encountering this problem, also please bring it to the attention of your GP or the Practice Managers attention so that they are aware of this problem and the solution to it.
3rd April 2014
We recently lost one of our members to prostate cancer, Tony Oakwell, and he asked that no one brought flowers to his funeral but donated to two causes that were important to him and one of them was this group. His wife Christine and her daughter Kirsten came along to the April meeting and gave us a lovely card expressing Tony's wishes and thanks and presented us with a donation of £150 with a wish to use it to help those who are in need of our help in their fight against Prostate Cancer. Our heart felt thanks go out to Christine and her family and she and Kirsten know that there are always hugs and room for them here while ever they need our support, that is why we call ourselves a support group and we are here to help anyone who needs our support regardless of their circumstances.
8th February 2014
Girls/Ladies Night?
At our last meeting a suggestion was put forward that we need feedback on and if positive then it is something we can look at putting into action. The suggestion was that we look into setting up occasional meetings strictly for the ladies who are relatives or friends of a prostate cancer sufferer so that they can discuss their own issues of being with a man who is going this type of cancer, Prostate cancer affects a man in areas that many are reluctant to openly discuss where the ladies are generally more likely to talk about things more freely and a group like this might enable them to talk their own problems through in an atmosphere that suits them better.
This will be promoted via Twitter and Facebook so please feel free to share it on your accounts so that we can receive maximum promotion for this suggestion and see how popular it might be?
9th November 2013
Our November guest speakers where Dominic Nash and Jamie Burgoyne of Kings Mill Hospital. Dominic is the Research Team Leader and Jamie is a Data Manager and they work together with patients collating information and genetic background that relates to the possible family links to Prostate Cancer. Their talk was really well received and the group put plenty of questions to them which they responded to excellently. It was good to hear about the research side and how the medical community is further exploring the genetic links between family members and other cancers. this will hopefully lead to genetic screening in the future for guys who are at risk where prostate cancer can be traced through a family.
3rd June 2013
This last few days has set challenge in Bob and Libby's home, Bob went to renew his prescription for his Caverject which our doctor issued with no problems only to find that our pharmacy could not get it from their suppliers (UniChem) because Pfizer are limiting the quantity that pharmacies can have in stock. Bob can have 12 injections a month on prescription which is six boxes yet Pfizer limit to them to just eight boxes a month even though our doctor and chemist has a catchment area of several thousand people. Our chemist rang UniChem who told them to ring Pfizer who were not answering their phones but eventually Libby managed to get through and spoke to customer services with her "Support Group" head on and surprise surprise, our chemist will get Bob's meds tomorrow. Sooooooo if you hit the same problem, call Pfizer on 01304 616161, ask for customer services and ask why they have limited your chemist as regards your meds, hopefully they will get their finger out and lift these unreasonable limits.
21st April 2013
An apology from our Chairman (Bob) I am sorry that the website has not been updated much recently and that we are behind schedule sorting out our Annual General Meeting but we have had health problems at our home and Libby has been in and out of hospital since last November and is now recovering from surgery and on the road to recovery so fingers crossed we can move forward now and i can put my focus back onto the support group again. We are looking for some new guest speakers for our group meetings and we would welcome any suggestions so if you know someone that you think would fit into this opportunity then please get in touch and let us now. Finally if you spot this strange yellow thing in the sky, it is called THE SUN and summer is definitely just around the corner, yippeeeeee ;-)
5th February 2013
One of our team members (Libby) had an Ipad from Santa and loves reading "The Mail Online" and frequently finds articles relating to Prostate Cancer and emails them into the group email inbox so we are now placing the links in the "News & Media" page in here so that you can check them out for yourself and there is some VERY useful information in them too so please keep looking for and reading them.
It is our group meeting on the 6th so please come along and see us and lets see if we can help you, last month was a really low turn out but the weather was awful so put your winter woolies on folks and come along and see and hear our Libby talk on her subject. Next month's speaker is already booked so keep on looking for when we update our Meeting Dates page.
1st January 2013
Today Prostate Cancer UK started a campaign called "The Sledgehammer" where they are determined to raise public awareness about this type of cancer and eradicate the public ignorance of this. 10,000 men a year in the UK die from this and all it takes to drastically reduce this is to get more men talking about problems in their underwear department instead of ignoring it or putting it down to getting older, go to their doctor for a blood test and stop being stubborn about having their back passage checked out with a finger in a rubber glove. I get SO annoyed at the excuses i hear because men refuse to talk about these problems yet this simple procedure can quite simply save his life, then he gets to grow old and see his grandchildren grow up.
I think the best route to this is via the women in a man's life as they are more aware of intimate issues to go to a doctor with and in my opinion they are more likely to nag a man into going which i think is a great thing, so come on then girls .................. look at the men in your life. There are two very simple things to look out for, does he go to pee far more than he used to and then complains that he is struggling to pee and does the man in your life also have problems in the bedroom, in that he is not like he used to be. If so then feel free to nag him to be checked out because then all being well, he will be with you a lot longer and that has to be a good thing.
31st December 2012
As i type this it is that time of year when the last few hours of this year count down to a brand new year. Any type of cancer has a nasty habit of frightening people big style and their whole life turns upside down and they do not know how they are going to cope, in this support group we work hard to get people to think positively to convince them that there is life after cancer. So take time as we go into the new year to take on a new attitude as a new year sort of gives you the chance to wipe the slate clean and start again in some aspects of your life BUT this only happens if you choose to make this change in your mindset yourself so make Bob and the rest of us smile by taking on this challenge and move into a new year feeling REALLY positive :-))
Finally everyone here on the team and all the members wish all our readers and followers a truly wonderful new year and wish you all that you wish for yourselves.
HAPPY NEW YEAR EVERYONE XX
3rd December 2012
Last week we where in Venice for a few days and you cannot go there without visiting St Marks church. As we where in there there was a section marked off in front of an altar where you could sit and soak the atmosphere up so we went and sat down. After a few minutes a priest came and started a service, none of which i could understand seeing as it was in Latin or Italian so i simply closed my eyes to soak up the atmosphere and automatically thought of the people that i know who are not well and concentrated on sending healing thoughts and energy to them. I have no idea how long i sat there but sending out healing thoughts felt like the most natural thing to do and i sure hope that my thoughts went to the people that where in my mind.
I think it is important that regardless of our own health and circumstances that we make time to think of others who are not well and send them healing thoughts as we all have people in our lives that need your thoughts, time and hugs to get them through their bad days.
2nd December 2012
I thought it was time we updated the site again and brought you up to speed on what is happening. This wednesday the 5th December is our Xmas fuddle and it was this meeting 12 months ago that i (Bob) gave in and agreed to run the group but it was with one condition, that the then Chairman Gerry Marshall was consulted about it and if he was happy about it, then i wanted him to join us on the committee so that he carried on with us moving the group forward. Sadly Gerry is sadly no longer with us but he is an honoury member of our team and will be fondly remembered by all of us here as we carry on what he started. A lot has happened in the last 12 months and i feel so proud of the group, the members and the team and i raise a glass to them all and say "cheers" and a merry Xmas to you all.
8th November 2012
Yesterday we attended at the request of the members a Men's Health Event at Kings Mill Hospital where the speakers where Mr Krishnan (consultant urologist) and Mr David Johnson (urology nurse specialist) As well as sitting in on the lecture we also took along our stand and display board with all our leaflets and information booklets and the stand was
quite popular and a lot of people where looking at and taking some of of our literature which is always a good thing. Also there where some people there that came and introduced themselves saying that they found the event via our website so it is good to know that this site and out Twitter page are doing there jobs. The more we can promote ourselves then there are more guys and their families that we can help.
7th November 2012
When our founding chairman, Gerry Marshall passed away and we went to his funeral the minister read out a poem that was important to Gerry so we asked the family if we could have a copy of it for the group's website, so here it is and it is a good moto to live your life by .............
Don't Quit
When you are at your lowest
And ready to give in
Grit your teeth and start again
Remember you can win
Each day that you wake up
Be determined in your mind
That you will enjoy it to the full
I think that you will find
Each day is like a bonus
And what more could you ask
God will lend a hand as well
And help you with this task
Strengths will come with each new day
Growing bit by bit
I believe that you can do it
So just for me …........ Don't Quit.
12th October 2012
Recently we were contacted by Kings Mill hospital and asked if I (Bob) could attend their Staff Excellence Awards evening at Mansfield Civic Centre to speak about a nomination i had made for an award called the People's Award, this award can only be nominated by members of the public and patients of the hospital and I nominated David Johnson, Specialist Urology Nurse, for his outstanding work in the way that he is with prostate cancer patients and their families. David's name comes up constantly when ever some one in this area talks about prostate cancer and it was my pleasure to nominate him and indeed an honour to be invited to talk about him.
However i did not realise that i would be on a podium/stage talking to 400 people and to say i was wobbly would be an understatement but i had my piece typed out and followed it the best i could with a bit of adlibing and when i had finshed reading it i then spoke from the heart unrehearsed as to my feelings about David and why i consider him so special to me, to this group and to anyone that needs his care.
Now i am a huggy person and will hug anyone and love it, but i know from experience that David was not always keen on being hugged but i think he is now converted because when his name was called and he came to the stage through all the applause for him, he flung his arms wide, grabbed me and gave me the biggest hug, way to go David ;-) As i drove home i had the biggest smile on my face knowing that this special man is rewarded by his patients for his hard work and i am honoured to know him and call him my friend.
11th October 2012
As our group is growing, different aspects of it affect me (Bob) in different ways and recently i felt quite humbled by the members. We had two new couples attend, one where the guy is a long term cancer sufferer and his care is on going and another where the guy is newly diagnosed and goes in for his surgery on the 22nd. Both of these couples have different concerns both of which can be VERY unsettling obviously but it was the way that the group members took to them and took them under their wings and supported them that made me smile inwardly. Some times it is not about talking to a health care specialist and being bombarded with lots of medical jargon, some times it is just being able to talk to some one that has trod this path before you and allow your self to be guided and supported by their experiences. Knowing there are others there to talk to who have been there, worn the tee shirt, eaten the pie and come out of it with a good outlook on life and a smile, is great to know and to share. The whole idea of this group from a support point of view is that the members are there for each other and there is so much knowledge and support from them as their experiences are unique to them so everyone can give you a different perspective and outlook on it based on what they have done on their journey through prostate cancer, i am humbled by the members and proud of them.
29th September 2012
Well the next meeting is nearly here again and our phone has been busy with new enquiries and we know that David Johnson in our local Urology department and Jo Gregg from Macmillan Cancer Support have been handing out our cards for the group. When we relaunched the group we were moderately hopeful that we might be successful but funds were limited at the time so we ordered 250 business cards but as things picked up our cards ran out, so tonight we bit the bullet and ordered 2,500 so hows that for being optimisic and sending out lots of positive thoughts that the guys newly diagnosed will now seek us out so that their journey through prostate cancer to a good long life afterwards will be helped by those who have trod this path before them, the moto on the card reads " We are here to care and support"
16th September 2012
I have just being watching a program about China that had nothing what so ever to do with health care but a troubled man was helped by another and offered a quote of his own that I loved "Sometimes you just need some one to make you feel better" I think this is very compatible to what our aims are about in this support group. We do not have a magic wand but we have lots of hugs if needed, ears to listen to you and your problems and people who have walked this path before you, so they can offer realistic advice based on their journey from prostate cancer to smiling again. This is possibly the best way to move forward from the worst news ever to getting your life back on track and taking charge of it again so that you are once more in control of your life and your life choices.
6th September 2012
Last night was our monthly meeting with Jo Gregg of Macmillan Cancer Support from Kings Mill Hospital as our guest speaker. She spoke at length about all the aspects that Macmillan has to offer and explained how Macmillan has changed over the years. Simply put, they are no longer about "end of life" scenarios but concentrate on helping people to adjust to making decisions about their treatment options and learning to live your life differently by adjusting your life accordingly. It was interesting watching the members lean forward listening to her and some taking notes so, so thank you Jo for a great night which was informative and you made it fun too.
We heard some good news too last night and today, we have two new members (a couple) where he is newly diagnosed with Prostate Cancer and his bone scan and MRI scan both came back showing no signs of the cancer spreading outside the prostate so it is big smiles for them as it is EXREMELY treatable at this stage so after surgery they can expect many more years to come and watch their family grow. Sending you lots of hugs guys :-)
1st Septmember 2012
Recently as we monitor and upgrade this website we have noticed a significant increase in the number of people who are visiting the site. So this prompts us to think that perhaps there are more people needing support in any way connected with prostate cancer so please make your self known to us. The group is not here just for the guys, we also support anyone connected to a prostate cancer sufferer so please contact us or come along and see us. You have nothing to loose but friends and cookies or buns to gain due to the family always baking.
31st August 2012
It can be a strange mix of emotions with our support group as we meet different people affected by prostate cancer in one way or another, it can be rewarding, it can be a buzz or it can be sad and those are the emotions that I (Bob) went through inside this last week. The rewarding side came about after a new couple to the group approached us after he was diagnosed that day and was looking for help in making decisions about his treatment options and to be assured that life does go on after Prostate Cancer and that life still IS good. I know from my experience that it certainly changes your attitude to life and what you expect from it.
Then of course we had the sad side as we received the news that Gerry our founding chairman had passed away and we set about emailing people that knew him and asking them to let others know, i will always remember him for his smile, his stubborn independance and that cheeky look he always seemed to have on his face, he certainly was one of life's good guys and a great character.
A funny memory of Gerry was him coming to our home on his crutches, in the rain, in his slippers and was adamant he was ok and did not need a lift in any one's car. So we all laughed about it with him but he DID get a lift home and did take a bag of home made cookies and buns back with him and i do not suppose they lasted long ;-)
The buzz came from going to see Jo Gregg of Macmillan to talk about her guest speaking for us and having a conversation about the way that information leaflets are structured for newly diagnosed men and how they do not seem to help the new guys. So we are looking towards a joint venture between Urology at Kings Mill Hospital, Macmillan Cancer Support and ourselves so that we all give out the same information to newly diagnosed men based around advice and information that will enable them to make an informed decision abour treatment options and we are soooooo pleased to be asked to be involved in something of this nature.
2nd August 2012
Our August meeting went very well and there was some exciting news from three of our members, two members had blood test results that showed their PSA levels as undetectable and one had a significant drop in his PSA due to a positive response to a change in treatment so it was big smiles for the group. We always state that we are member driven so we discussed with the members various options on guest speakers and therapists and we now have a list to work our way through. In the next few months so we will be having a speaker from Macmillan Cancer Support. A fitness trainer to teach the group how to strengthen the lower the abdominal and core muscles to compliment the pelvic floor muscle exercises that support the bladder and aid bladder control. Someone to talk to the group about incontinence issues and how to improve or cope more successfully with it. Then someone to talk about the side of Prostate Cancer that appears to be a tabboo subject yet is close to us all ..... the dreaded ED issue, so yes we will be looking to find ways to help you improve your sex lives as it IS important, should be discussed and we are more than willing to openly discuss this delicate issue and any other problems. We have no boundaries here and will openly talk about any aspect of prostate cancer and find ways to help you improve the quality of your life.
25th July 2012
There is a blood test that anyone that understands prostate problems will be aware of, it is the PSA test which is Prostate-specific antigen. The worse prostate health is then the psa count rises, even after having the prostate removed they still do the blood test because if it rises again post op it is an indicator that the cancer may have returned. So today was my (Bob) turn to go through this again so here is my latest update, i am now 2 years since diagnosed with PCa and 19 months post op to remove the offending gland. Had my bloods taken on monday for my psa test and hospital rang with my appointment at 22nd August so i rang Urology today to ask for my psa results and they rang me back an hour later. It is ................... 0.03 which they class as undetectable as the equipment will not read any lower ............ so it is big smiles all round again :-))))
22nd June 2012
I spotted something earlier about how guys who have had Prostate Cancer seem to be treated unequally as regards treatment towards the intimate sides of our lives so i thought i would copy and paste it here. Apologies if it seems not right to repost but i left his name/ID off .........
I'm appalled that it is considered necessary for women (who I have pity for) that suffer the challenges of breast cancer have reconstruction paid for because it is considered medically necessary because of the psychological impact. Where is the treatment for our psychological impact? Is it ignored because it is not visible or do we just not speak up enough due to the embarrassment of feeling that we lost a big part of what we consider to be our manhood? I advocate, talk and bitch about our problems every day, but it doesn't seem to be enough. When will we 'mobilize' and have our concerns not only heard, but addressed as well? I am a man, a son, a brother, a father, a husband, and a prostate cancer survivor; but mostly a man. I am tired of being shut out and placed in a corner because I have a condition that is not discussed in 'polite society'. This is a real problem that affects real people and we can no longer sit around and allow others to dictate what is right for us.
19th June 2012
Erectile Dysfunction medication update, this was spotted on a Facebook page that is for guys that have gone through prostate cancer and i was sure it would be appreciated in here. I will paste the link in here so that you can highlight it, right click and copy it and then paste it into a new page in your internet browser. I really must work out how to make web links active in here ;-)
http://www.prostate.net/2012/erectile-dysfunction-impotence/stendra-for-erectile-dysfunction/
16th June 2012
Our youngest team member, Adam Whittaker became aware of Prostate Cancer when his grandfather was diagnosed with and then passed away with it. When it was the first anniversary of his passing, Adam along with his mum (Jeanette Whittaker) decided to honour his memory by fund raising in memory of him for the Prostate Cancer Charity. He and his mum in just two months raised £2000 in total and Adam's school helped him in this and are so proud of him that they are awarding him the David Yates Award for the most effort in charity fundraising. But this is being done publicly at our local theatre and thay have asked us to represent the Prostate Cancer Charity UK by accepting the "Big" cheque for them and we are indeed honoured to do so. We say once again ..... well done Adam.
6th June 2012
WOW!!!!! what a night and if you where not here then you should have been. David Johnson our speaker tonight was fantastic, his presentation, delivery and content was spot on and he handled all questions proffesionally and with due care and in one case he handed out his card and said "come and see me in clinic tomorrow and we will sort it" If i said i was impressed it would be an understatement. It may appear that i am biased towards David and yes that is correct, in my (Bob) personal case David has been the guy i have turned to when i have hit a "rock bottom" problem and he is always there to support and care. I spoke to the bulk of the committee about him to seek permission to ask him something which they agreed to and now David is on the team as our Urology Advisor so we have someone to turn to when we are asked a question which we are not qualified to answer. Watch this space for future speakers and if you have a suggestion for one then please feel free to contact us.
21st May 2012
At last we have managed to sort out our new bank account and I did not realise that it could be so complex. The account is classed as "Community Banking" as it is an account for a chartity, society or a club where you are banking for the benefit of others instead of an individual therefore the bank insist on doing credit checks on the officers whose names are on the account. Obviously the bank need to safe guard the account so that no one can abuse it. Though we are SOOOO pleased to be able to bank this money so that we can help others we will be so careful to make sure that it is used wisely so that others benefit from it.
13th May 2012
One of our team , Adam Whittaker, who is also our youngest member has been awarded the David Yates Award for the most effort in charity fundraising by his school but this was due to him helping towards raising £2000 for the Prostate Cancer UK charity after loosing his grandfather to PCa, his mum who is also on our team is very proud of him and is to inform the school that his work is still carrying on in memory of his grandfather as he works hard with the rest of us on this team. But we congratulate him on this award as so few guys would work so hard on a project like this, so WELL DONE Adam from all of us on the NNPCSG.
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5th May 2012
It was our fund raiser last night and Libby had originally set herself a target of raising £1000 for the group but ticket and raffle sales were going better than anticipated so the suggested target kept being nudged upwards and as the event started we began to think that maybe we could reach £1500. As we started Becky and Sarah set about about working out how much we had achieved with tickets and raffle and we were amazed to have reached £1502.53 but at the end we asked people if they could drop any loose change in a bucket and that ammounted to over £50 so we totalled out at £1557.04 so we came away with big smiles all round. So it is huge thanks to Libby, Becky, Jeanette, Sarah and Adam and i think we should all be proud of what we have achieved.
3rd May 2012
Things are going along great with the group as we become established and our membership is gradually increasing which is terrific and makes it all worth while. Yesterday at the group meeting we asked the members what they wanted from the group as I told them that I do not mind steering the group on this journey but we want to be able to provide what the group members expect of the group. They asked if we could bring in some guest speakers now that we are getting established so we talked about various options and we decided on the first two and I have already emailed the first person and "fingers crossed" they are free and can attend. As I was typing this a response email came through and our first guest speaker accepted and is booked. So David Johnson, Specialist Urology Nurse at Kings Mill Hospital will be talking to the group, big smiles here now :-))
Tomorrow is our first big fundraiser evening and we are getting excited now, the tickets for seats have nearly sold out and we have already sold over £100 worth of raffle tickets so we are anticipating raising in excess of £1000 for the group which is AMAZING!!!!!! and we are already looking at ways to provide help for people with problems relating to prostate cancer. We are not here to build up a huge bank balance, we are here to help and support.
11th April 2012
A lovely suprise came in the post today from Macmillan Cancer Support, a letter telling us that our application for a grant was successful and we now have £500 to put into our account. That is when we open it, we have had a pack come through from Barclays to open a new account for the group and there is LOTS of paperwork to do first, ah well never mind at least we can pay money into it now :-)
5th April 2012
Last night was great and our home was buzzing with new people. I (Bob) really did not want to interrupt the chatter to start the evening as it was sooooo good to see every one chatting and getting on but we needed to make a start. I started by introducing myself and telling the group about my background and personal experience with prostate cancer and what my hopes are for the future of the group, then i asked the "team" to introduce themselves to the group. After that it was the members time to talk about their experiences with prostate cancer. It was not just new guys here, their wives/partners where here also and it was interesting to hear their side of life too and how this had affected them. I was asked what my plans where for the group and my answer suprised people, i said it is not my group but theirs and the team will take note of what the members want and ask for, then the group will evolve naturally the way that they want it too, it is to be a member's led group.
4th April 2012
Well today is when we open up our home as we officially relaunch the group at our "Premiere" The house is reorganised, i cleared the snow off the drive (yes you read it right, it snowed here overnight in April) And we have had contact from people confirming they are coming, So it is time to get showered and changed and make people welcome as they turn up, all systems go at last ;-)3rd April 2012
The day before our first meeting and it is quiet here now. No more emails to send out, no more letters to post and no more posters to send out. I check daily on the "hits" on the website and they are generally increasing with more hits in the weekend than midweek so we know that you are finding the site and looking through it, maybe it is this page you keep coming back to read ;-) The girls are having a baking session tomorrow so there will be goodies to go with your tea or coffee or if you are really good you could have a coke, oh no you cannot as there is way too much caffeine in that for us prostate problem guys. If you are coming along tomorrow it would be helpful if you could ring 01623 515899 or email us (email addresses on contact page) to let us know, it makes it easier then to adjust our home accordingly. Well that is me done now (apart from folding yet more handouts) so we look forward to whatever tomorrow night brings, remember though that this group is YOURS not ours so please come along and introduce yourself and you will hopefully make new friends too.
31st March 2012
The membership and business cards came today, so we are all set for our "premiere" as Jeanette calls it now. I never thought of it like that but i suppose it is true, we are premiering this group, our dreams, our ambitions and our hopes that we can help people through this awfull condition. Every one of us in this team has been touched by Prostate cancer and it has had a massive impact on each and every one of us, so we want to share our experiences so that others may go through this journey with a shoulder to lean on.
29th March 2012
We have decided to do our membership cards in laminated sleeves so we ordered the sleeves and have gained access to a laminator and the membership cards are now in the post so they should be here any day now. We have written to the old members from when the group was in it's first phase to invite them along to the relaunch and it will be good to see them if they are free. Also today we had an email from a doctor's surgery asking us to send them via email the handout leaflet that we use so the doctors can print it off for their own patients, it is great to know that we are now being considered usefull. This week we delivered posters of our meetings and our handout leaflet to the Urology Clinic and to the Mcmillan pod at Kings Mill Hospital so that they can display the posters and give the handouts to anyone that we may be able to help. If you think you know of some where to display a poster for us, then please get in touch and let us know.
21st March 2012
I ordered our business and membership cards last night, I think the online ordering system is so complex that they will be printed in less time than it took me to order them. Each time we think everything is in place, then it is what about this and this and this? Ah well we WILL have everything in place soon as i am determined we will have, now we just need you, the readers here as our members, not that we wish anyone to be ill of course :((
19th March 2012
I (Bob) went to our local paper today, the Chad, to see Catherine Allen who has agreed to do a feature on the group prior to the first public meeting. She asked about my history/background with prostate cancer and how i came to be involved with the group. I was also very pleased that she asked about the purpose and aims of the group as this is far important than any individual's story, this group is here for you if you are reading this or anyone who has been touched by prostate cancer. So hopefully we will get a good write up (are you reading this Catherine lol) which will promote the group sufficiently so that our membership increases so that we can help more people. So look out for us in this week's Chad and on their website.
Also we had our first response from our big mail out today, a local pharmacy emailed us to ask for some handouts to keep in his shop so that he can give them to his customers that are in a situation where we may be able to help. It felt sooooooo good reading that first email knowing that we are now out there in the hands of others.
Our early days.
We had our first meeting with Steve Shaw & Amanda Brikmanis in early January this year (2012) and brought together the team, all of us in one way or another have been affected by Prostate cancer and that gave us all motivation to relaunch the support group so that we could be there for others who have been on this same journey but need help, support, friendship, a shoulder to cry on or just simply a hug and a chat.
We are an ambitious team so decided if we are going to do this we will aim to be as good as we can. So we decided to organise a mail out to promote ourselves to the health care community as well as the general public. So we set ourselves goals to achieve and this website was one of the first, then the Twitter page and the Face Book group and obviously the group email account, which we are probably going to change for one that is shorter and simpler. Then we started on the mail out, Sarah looked on the direct gov website and found you can search for doctors and chemists in your own area so we compiled a list of 100 doctors and 100 chemists which Becky typed into a "Word" document, this was emailed to Niki who I (Bob) work with and she converted it into a label run for us. I approached my manager at work to see if I could use the photocopier and he very kindly said yes. I then spoke to his manager to ask if the company would donate the envelopes, who not only said yes but offered to pay for the postage, to be honest I nearly cried at that point as it made me sooooo emotional. So it took a week of photocoping on my lunch breaks and all the letters went out on Thursday the 15th of March, so now we sit back and wait and hopefully (fingers, toes and eyes crossed) we get a positive response.
I also spoke to a senior Urology nurse at Kings Mill Hospital about how to get some literature so that we can offer this to members to enable them to make informed decisions on their choice of treatment. He recommended I contact the Prostate Cancer Charity who have been fantastic and sent us ten boxes of leaflets covering all aspects of prostate related problems and treatments so we are now well stocked up. Steve Shaw had organised an event for Self Help Groups so Libby, Becky and Sarah went along to have a stall to promote our group and start on the raising of awareness of this disease in our area.
The next thing is to promote the group more prior to the first public meeting, so on Monday the 19th I have an appointment at our local paper, the Chad, and they are going to do an article on us and I hope I can get them to also post it on their website and on their Twitter page also. Then also said that if the group turns out to be successfull that they will then run a bigger feature on it, so it smiles all round at the moment.
As we move on from this we start to think about fundraising for the group and it's members, we have applied for a small grant from Macmillan but being ambitious we have bigger ideas, so that brings Jeanette into the limelight now as she is our fundraiser, one event is being planned but Jeanette is thinking of other grander ways to raise funds too. If we want our members to be well supported then we need to be able to offer what ever we can to help them and generally this needs to be funded, so if you are feeling generous then we will kindly accept any offers to boost our funds to help prostate cancer sufferers and their loved ones.
4 November 2015
I apologise for not updating in here for a while but i must write about our meeting tonight. Our speaker tonight was Jo Gregg of Macmillan Cancer Support and she was FANTASTIC tonight so thank you sooooo much Jo. I then worked out another way of using social media to promote our group and we had the most hits EVER on our website today so hopefully we have reached out to more people today which may boost our attendance but more important enable us to reach more people to help, fingers crossed here for that, thank you everyone for your support.
16 May 2014
Problems getting your injection prescriptions filled
It has come to our attention that the guys using Caverject injections were unable to get their prescriptions filled, so I (Bob) went to get mine to see what has been happening. Of course i hit the same problem and was told they cannot get them from Pfizer as they have production problems.
So I rang Pfizer to see what the issue is and it turns out they have problems with their manufacturer and are switching to another manufacturer and there will be non available till early 2016, fat lot of good that is to us. So i searched online for an alternative and found a company called UCB Pharma that make an alprostadil injection kit that does the same job as Caverject and it is available on prescription from your GP and my pharmacist at Manor Pharmacy checked with their supplier and they can get them.
It is a different delivery system to Caverject though so you need to see your GP for a prescription for the "Starter Kit" which is the injection kit and then you need repeat prescriptions for the refill kit. These come in 10, 20 or 40 micrograms sizes but due to demand they do admit to delivery issues with 10, sometimes with the 20 but the 40 is fine, so personally i will be asking for the 40 so as not to encounter these delivery issues.
I do hope that this information is helpful to you all and feel free to pass it on to anyone else that you know that is encountering this problem, also please bring it to the attention of your GP or the Practice Managers attention so that they are aware of this problem and the solution to it.
3rd April 2014
We recently lost one of our members to prostate cancer, Tony Oakwell, and he asked that no one brought flowers to his funeral but donated to two causes that were important to him and one of them was this group. His wife Christine and her daughter Kirsten came along to the April meeting and gave us a lovely card expressing Tony's wishes and thanks and presented us with a donation of £150 with a wish to use it to help those who are in need of our help in their fight against Prostate Cancer. Our heart felt thanks go out to Christine and her family and she and Kirsten know that there are always hugs and room for them here while ever they need our support, that is why we call ourselves a support group and we are here to help anyone who needs our support regardless of their circumstances.
8th February 2014
Girls/Ladies Night?
At our last meeting a suggestion was put forward that we need feedback on and if positive then it is something we can look at putting into action. The suggestion was that we look into setting up occasional meetings strictly for the ladies who are relatives or friends of a prostate cancer sufferer so that they can discuss their own issues of being with a man who is going this type of cancer, Prostate cancer affects a man in areas that many are reluctant to openly discuss where the ladies are generally more likely to talk about things more freely and a group like this might enable them to talk their own problems through in an atmosphere that suits them better.
This will be promoted via Twitter and Facebook so please feel free to share it on your accounts so that we can receive maximum promotion for this suggestion and see how popular it might be?
9th November 2013
Our November guest speakers where Dominic Nash and Jamie Burgoyne of Kings Mill Hospital. Dominic is the Research Team Leader and Jamie is a Data Manager and they work together with patients collating information and genetic background that relates to the possible family links to Prostate Cancer. Their talk was really well received and the group put plenty of questions to them which they responded to excellently. It was good to hear about the research side and how the medical community is further exploring the genetic links between family members and other cancers. this will hopefully lead to genetic screening in the future for guys who are at risk where prostate cancer can be traced through a family.
3rd June 2013
This last few days has set challenge in Bob and Libby's home, Bob went to renew his prescription for his Caverject which our doctor issued with no problems only to find that our pharmacy could not get it from their suppliers (UniChem) because Pfizer are limiting the quantity that pharmacies can have in stock. Bob can have 12 injections a month on prescription which is six boxes yet Pfizer limit to them to just eight boxes a month even though our doctor and chemist has a catchment area of several thousand people. Our chemist rang UniChem who told them to ring Pfizer who were not answering their phones but eventually Libby managed to get through and spoke to customer services with her "Support Group" head on and surprise surprise, our chemist will get Bob's meds tomorrow. Sooooooo if you hit the same problem, call Pfizer on 01304 616161, ask for customer services and ask why they have limited your chemist as regards your meds, hopefully they will get their finger out and lift these unreasonable limits.
21st April 2013
An apology from our Chairman (Bob) I am sorry that the website has not been updated much recently and that we are behind schedule sorting out our Annual General Meeting but we have had health problems at our home and Libby has been in and out of hospital since last November and is now recovering from surgery and on the road to recovery so fingers crossed we can move forward now and i can put my focus back onto the support group again. We are looking for some new guest speakers for our group meetings and we would welcome any suggestions so if you know someone that you think would fit into this opportunity then please get in touch and let us now. Finally if you spot this strange yellow thing in the sky, it is called THE SUN and summer is definitely just around the corner, yippeeeeee ;-)
5th February 2013
One of our team members (Libby) had an Ipad from Santa and loves reading "The Mail Online" and frequently finds articles relating to Prostate Cancer and emails them into the group email inbox so we are now placing the links in the "News & Media" page in here so that you can check them out for yourself and there is some VERY useful information in them too so please keep looking for and reading them.
It is our group meeting on the 6th so please come along and see us and lets see if we can help you, last month was a really low turn out but the weather was awful so put your winter woolies on folks and come along and see and hear our Libby talk on her subject. Next month's speaker is already booked so keep on looking for when we update our Meeting Dates page.
1st January 2013
Today Prostate Cancer UK started a campaign called "The Sledgehammer" where they are determined to raise public awareness about this type of cancer and eradicate the public ignorance of this. 10,000 men a year in the UK die from this and all it takes to drastically reduce this is to get more men talking about problems in their underwear department instead of ignoring it or putting it down to getting older, go to their doctor for a blood test and stop being stubborn about having their back passage checked out with a finger in a rubber glove. I get SO annoyed at the excuses i hear because men refuse to talk about these problems yet this simple procedure can quite simply save his life, then he gets to grow old and see his grandchildren grow up.
I think the best route to this is via the women in a man's life as they are more aware of intimate issues to go to a doctor with and in my opinion they are more likely to nag a man into going which i think is a great thing, so come on then girls .................. look at the men in your life. There are two very simple things to look out for, does he go to pee far more than he used to and then complains that he is struggling to pee and does the man in your life also have problems in the bedroom, in that he is not like he used to be. If so then feel free to nag him to be checked out because then all being well, he will be with you a lot longer and that has to be a good thing.
31st December 2012
As i type this it is that time of year when the last few hours of this year count down to a brand new year. Any type of cancer has a nasty habit of frightening people big style and their whole life turns upside down and they do not know how they are going to cope, in this support group we work hard to get people to think positively to convince them that there is life after cancer. So take time as we go into the new year to take on a new attitude as a new year sort of gives you the chance to wipe the slate clean and start again in some aspects of your life BUT this only happens if you choose to make this change in your mindset yourself so make Bob and the rest of us smile by taking on this challenge and move into a new year feeling REALLY positive :-))
Finally everyone here on the team and all the members wish all our readers and followers a truly wonderful new year and wish you all that you wish for yourselves.
HAPPY NEW YEAR EVERYONE XX
3rd December 2012
Last week we where in Venice for a few days and you cannot go there without visiting St Marks church. As we where in there there was a section marked off in front of an altar where you could sit and soak the atmosphere up so we went and sat down. After a few minutes a priest came and started a service, none of which i could understand seeing as it was in Latin or Italian so i simply closed my eyes to soak up the atmosphere and automatically thought of the people that i know who are not well and concentrated on sending healing thoughts and energy to them. I have no idea how long i sat there but sending out healing thoughts felt like the most natural thing to do and i sure hope that my thoughts went to the people that where in my mind.
I think it is important that regardless of our own health and circumstances that we make time to think of others who are not well and send them healing thoughts as we all have people in our lives that need your thoughts, time and hugs to get them through their bad days.
2nd December 2012
I thought it was time we updated the site again and brought you up to speed on what is happening. This wednesday the 5th December is our Xmas fuddle and it was this meeting 12 months ago that i (Bob) gave in and agreed to run the group but it was with one condition, that the then Chairman Gerry Marshall was consulted about it and if he was happy about it, then i wanted him to join us on the committee so that he carried on with us moving the group forward. Sadly Gerry is sadly no longer with us but he is an honoury member of our team and will be fondly remembered by all of us here as we carry on what he started. A lot has happened in the last 12 months and i feel so proud of the group, the members and the team and i raise a glass to them all and say "cheers" and a merry Xmas to you all.
8th November 2012
Yesterday we attended at the request of the members a Men's Health Event at Kings Mill Hospital where the speakers where Mr Krishnan (consultant urologist) and Mr David Johnson (urology nurse specialist) As well as sitting in on the lecture we also took along our stand and display board with all our leaflets and information booklets and the stand was
quite popular and a lot of people where looking at and taking some of of our literature which is always a good thing. Also there where some people there that came and introduced themselves saying that they found the event via our website so it is good to know that this site and out Twitter page are doing there jobs. The more we can promote ourselves then there are more guys and their families that we can help.
7th November 2012
When our founding chairman, Gerry Marshall passed away and we went to his funeral the minister read out a poem that was important to Gerry so we asked the family if we could have a copy of it for the group's website, so here it is and it is a good moto to live your life by .............
Don't Quit
When you are at your lowest
And ready to give in
Grit your teeth and start again
Remember you can win
Each day that you wake up
Be determined in your mind
That you will enjoy it to the full
I think that you will find
Each day is like a bonus
And what more could you ask
God will lend a hand as well
And help you with this task
Strengths will come with each new day
Growing bit by bit
I believe that you can do it
So just for me …........ Don't Quit.
12th October 2012
Recently we were contacted by Kings Mill hospital and asked if I (Bob) could attend their Staff Excellence Awards evening at Mansfield Civic Centre to speak about a nomination i had made for an award called the People's Award, this award can only be nominated by members of the public and patients of the hospital and I nominated David Johnson, Specialist Urology Nurse, for his outstanding work in the way that he is with prostate cancer patients and their families. David's name comes up constantly when ever some one in this area talks about prostate cancer and it was my pleasure to nominate him and indeed an honour to be invited to talk about him.
However i did not realise that i would be on a podium/stage talking to 400 people and to say i was wobbly would be an understatement but i had my piece typed out and followed it the best i could with a bit of adlibing and when i had finshed reading it i then spoke from the heart unrehearsed as to my feelings about David and why i consider him so special to me, to this group and to anyone that needs his care.
Now i am a huggy person and will hug anyone and love it, but i know from experience that David was not always keen on being hugged but i think he is now converted because when his name was called and he came to the stage through all the applause for him, he flung his arms wide, grabbed me and gave me the biggest hug, way to go David ;-) As i drove home i had the biggest smile on my face knowing that this special man is rewarded by his patients for his hard work and i am honoured to know him and call him my friend.
11th October 2012
As our group is growing, different aspects of it affect me (Bob) in different ways and recently i felt quite humbled by the members. We had two new couples attend, one where the guy is a long term cancer sufferer and his care is on going and another where the guy is newly diagnosed and goes in for his surgery on the 22nd. Both of these couples have different concerns both of which can be VERY unsettling obviously but it was the way that the group members took to them and took them under their wings and supported them that made me smile inwardly. Some times it is not about talking to a health care specialist and being bombarded with lots of medical jargon, some times it is just being able to talk to some one that has trod this path before you and allow your self to be guided and supported by their experiences. Knowing there are others there to talk to who have been there, worn the tee shirt, eaten the pie and come out of it with a good outlook on life and a smile, is great to know and to share. The whole idea of this group from a support point of view is that the members are there for each other and there is so much knowledge and support from them as their experiences are unique to them so everyone can give you a different perspective and outlook on it based on what they have done on their journey through prostate cancer, i am humbled by the members and proud of them.
29th September 2012
Well the next meeting is nearly here again and our phone has been busy with new enquiries and we know that David Johnson in our local Urology department and Jo Gregg from Macmillan Cancer Support have been handing out our cards for the group. When we relaunched the group we were moderately hopeful that we might be successful but funds were limited at the time so we ordered 250 business cards but as things picked up our cards ran out, so tonight we bit the bullet and ordered 2,500 so hows that for being optimisic and sending out lots of positive thoughts that the guys newly diagnosed will now seek us out so that their journey through prostate cancer to a good long life afterwards will be helped by those who have trod this path before them, the moto on the card reads " We are here to care and support"
16th September 2012
I have just being watching a program about China that had nothing what so ever to do with health care but a troubled man was helped by another and offered a quote of his own that I loved "Sometimes you just need some one to make you feel better" I think this is very compatible to what our aims are about in this support group. We do not have a magic wand but we have lots of hugs if needed, ears to listen to you and your problems and people who have walked this path before you, so they can offer realistic advice based on their journey from prostate cancer to smiling again. This is possibly the best way to move forward from the worst news ever to getting your life back on track and taking charge of it again so that you are once more in control of your life and your life choices.
6th September 2012
Last night was our monthly meeting with Jo Gregg of Macmillan Cancer Support from Kings Mill Hospital as our guest speaker. She spoke at length about all the aspects that Macmillan has to offer and explained how Macmillan has changed over the years. Simply put, they are no longer about "end of life" scenarios but concentrate on helping people to adjust to making decisions about their treatment options and learning to live your life differently by adjusting your life accordingly. It was interesting watching the members lean forward listening to her and some taking notes so, so thank you Jo for a great night which was informative and you made it fun too.
We heard some good news too last night and today, we have two new members (a couple) where he is newly diagnosed with Prostate Cancer and his bone scan and MRI scan both came back showing no signs of the cancer spreading outside the prostate so it is big smiles for them as it is EXREMELY treatable at this stage so after surgery they can expect many more years to come and watch their family grow. Sending you lots of hugs guys :-)
1st Septmember 2012
Recently as we monitor and upgrade this website we have noticed a significant increase in the number of people who are visiting the site. So this prompts us to think that perhaps there are more people needing support in any way connected with prostate cancer so please make your self known to us. The group is not here just for the guys, we also support anyone connected to a prostate cancer sufferer so please contact us or come along and see us. You have nothing to loose but friends and cookies or buns to gain due to the family always baking.
31st August 2012
It can be a strange mix of emotions with our support group as we meet different people affected by prostate cancer in one way or another, it can be rewarding, it can be a buzz or it can be sad and those are the emotions that I (Bob) went through inside this last week. The rewarding side came about after a new couple to the group approached us after he was diagnosed that day and was looking for help in making decisions about his treatment options and to be assured that life does go on after Prostate Cancer and that life still IS good. I know from my experience that it certainly changes your attitude to life and what you expect from it.
Then of course we had the sad side as we received the news that Gerry our founding chairman had passed away and we set about emailing people that knew him and asking them to let others know, i will always remember him for his smile, his stubborn independance and that cheeky look he always seemed to have on his face, he certainly was one of life's good guys and a great character.
A funny memory of Gerry was him coming to our home on his crutches, in the rain, in his slippers and was adamant he was ok and did not need a lift in any one's car. So we all laughed about it with him but he DID get a lift home and did take a bag of home made cookies and buns back with him and i do not suppose they lasted long ;-)
The buzz came from going to see Jo Gregg of Macmillan to talk about her guest speaking for us and having a conversation about the way that information leaflets are structured for newly diagnosed men and how they do not seem to help the new guys. So we are looking towards a joint venture between Urology at Kings Mill Hospital, Macmillan Cancer Support and ourselves so that we all give out the same information to newly diagnosed men based around advice and information that will enable them to make an informed decision abour treatment options and we are soooooo pleased to be asked to be involved in something of this nature.
2nd August 2012
Our August meeting went very well and there was some exciting news from three of our members, two members had blood test results that showed their PSA levels as undetectable and one had a significant drop in his PSA due to a positive response to a change in treatment so it was big smiles for the group. We always state that we are member driven so we discussed with the members various options on guest speakers and therapists and we now have a list to work our way through. In the next few months so we will be having a speaker from Macmillan Cancer Support. A fitness trainer to teach the group how to strengthen the lower the abdominal and core muscles to compliment the pelvic floor muscle exercises that support the bladder and aid bladder control. Someone to talk to the group about incontinence issues and how to improve or cope more successfully with it. Then someone to talk about the side of Prostate Cancer that appears to be a tabboo subject yet is close to us all ..... the dreaded ED issue, so yes we will be looking to find ways to help you improve your sex lives as it IS important, should be discussed and we are more than willing to openly discuss this delicate issue and any other problems. We have no boundaries here and will openly talk about any aspect of prostate cancer and find ways to help you improve the quality of your life.
25th July 2012
There is a blood test that anyone that understands prostate problems will be aware of, it is the PSA test which is Prostate-specific antigen. The worse prostate health is then the psa count rises, even after having the prostate removed they still do the blood test because if it rises again post op it is an indicator that the cancer may have returned. So today was my (Bob) turn to go through this again so here is my latest update, i am now 2 years since diagnosed with PCa and 19 months post op to remove the offending gland. Had my bloods taken on monday for my psa test and hospital rang with my appointment at 22nd August so i rang Urology today to ask for my psa results and they rang me back an hour later. It is ................... 0.03 which they class as undetectable as the equipment will not read any lower ............ so it is big smiles all round again :-))))
22nd June 2012
I spotted something earlier about how guys who have had Prostate Cancer seem to be treated unequally as regards treatment towards the intimate sides of our lives so i thought i would copy and paste it here. Apologies if it seems not right to repost but i left his name/ID off .........
I'm appalled that it is considered necessary for women (who I have pity for) that suffer the challenges of breast cancer have reconstruction paid for because it is considered medically necessary because of the psychological impact. Where is the treatment for our psychological impact? Is it ignored because it is not visible or do we just not speak up enough due to the embarrassment of feeling that we lost a big part of what we consider to be our manhood? I advocate, talk and bitch about our problems every day, but it doesn't seem to be enough. When will we 'mobilize' and have our concerns not only heard, but addressed as well? I am a man, a son, a brother, a father, a husband, and a prostate cancer survivor; but mostly a man. I am tired of being shut out and placed in a corner because I have a condition that is not discussed in 'polite society'. This is a real problem that affects real people and we can no longer sit around and allow others to dictate what is right for us.
19th June 2012
Erectile Dysfunction medication update, this was spotted on a Facebook page that is for guys that have gone through prostate cancer and i was sure it would be appreciated in here. I will paste the link in here so that you can highlight it, right click and copy it and then paste it into a new page in your internet browser. I really must work out how to make web links active in here ;-)
http://www.prostate.net/2012/erectile-dysfunction-impotence/stendra-for-erectile-dysfunction/
16th June 2012
Our youngest team member, Adam Whittaker became aware of Prostate Cancer when his grandfather was diagnosed with and then passed away with it. When it was the first anniversary of his passing, Adam along with his mum (Jeanette Whittaker) decided to honour his memory by fund raising in memory of him for the Prostate Cancer Charity. He and his mum in just two months raised £2000 in total and Adam's school helped him in this and are so proud of him that they are awarding him the David Yates Award for the most effort in charity fundraising. But this is being done publicly at our local theatre and thay have asked us to represent the Prostate Cancer Charity UK by accepting the "Big" cheque for them and we are indeed honoured to do so. We say once again ..... well done Adam.
6th June 2012
WOW!!!!! what a night and if you where not here then you should have been. David Johnson our speaker tonight was fantastic, his presentation, delivery and content was spot on and he handled all questions proffesionally and with due care and in one case he handed out his card and said "come and see me in clinic tomorrow and we will sort it" If i said i was impressed it would be an understatement. It may appear that i am biased towards David and yes that is correct, in my (Bob) personal case David has been the guy i have turned to when i have hit a "rock bottom" problem and he is always there to support and care. I spoke to the bulk of the committee about him to seek permission to ask him something which they agreed to and now David is on the team as our Urology Advisor so we have someone to turn to when we are asked a question which we are not qualified to answer. Watch this space for future speakers and if you have a suggestion for one then please feel free to contact us.
21st May 2012
At last we have managed to sort out our new bank account and I did not realise that it could be so complex. The account is classed as "Community Banking" as it is an account for a chartity, society or a club where you are banking for the benefit of others instead of an individual therefore the bank insist on doing credit checks on the officers whose names are on the account. Obviously the bank need to safe guard the account so that no one can abuse it. Though we are SOOOO pleased to be able to bank this money so that we can help others we will be so careful to make sure that it is used wisely so that others benefit from it.
13th May 2012
One of our team , Adam Whittaker, who is also our youngest member has been awarded the David Yates Award for the most effort in charity fundraising by his school but this was due to him helping towards raising £2000 for the Prostate Cancer UK charity after loosing his grandfather to PCa, his mum who is also on our team is very proud of him and is to inform the school that his work is still carrying on in memory of his grandfather as he works hard with the rest of us on this team. But we congratulate him on this award as so few guys would work so hard on a project like this, so WELL DONE Adam from all of us on the NNPCSG.
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5th May 2012
It was our fund raiser last night and Libby had originally set herself a target of raising £1000 for the group but ticket and raffle sales were going better than anticipated so the suggested target kept being nudged upwards and as the event started we began to think that maybe we could reach £1500. As we started Becky and Sarah set about about working out how much we had achieved with tickets and raffle and we were amazed to have reached £1502.53 but at the end we asked people if they could drop any loose change in a bucket and that ammounted to over £50 so we totalled out at £1557.04 so we came away with big smiles all round. So it is huge thanks to Libby, Becky, Jeanette, Sarah and Adam and i think we should all be proud of what we have achieved.
3rd May 2012
Things are going along great with the group as we become established and our membership is gradually increasing which is terrific and makes it all worth while. Yesterday at the group meeting we asked the members what they wanted from the group as I told them that I do not mind steering the group on this journey but we want to be able to provide what the group members expect of the group. They asked if we could bring in some guest speakers now that we are getting established so we talked about various options and we decided on the first two and I have already emailed the first person and "fingers crossed" they are free and can attend. As I was typing this a response email came through and our first guest speaker accepted and is booked. So David Johnson, Specialist Urology Nurse at Kings Mill Hospital will be talking to the group, big smiles here now :-))
Tomorrow is our first big fundraiser evening and we are getting excited now, the tickets for seats have nearly sold out and we have already sold over £100 worth of raffle tickets so we are anticipating raising in excess of £1000 for the group which is AMAZING!!!!!! and we are already looking at ways to provide help for people with problems relating to prostate cancer. We are not here to build up a huge bank balance, we are here to help and support.
11th April 2012
A lovely suprise came in the post today from Macmillan Cancer Support, a letter telling us that our application for a grant was successful and we now have £500 to put into our account. That is when we open it, we have had a pack come through from Barclays to open a new account for the group and there is LOTS of paperwork to do first, ah well never mind at least we can pay money into it now :-)
5th April 2012
Last night was great and our home was buzzing with new people. I (Bob) really did not want to interrupt the chatter to start the evening as it was sooooo good to see every one chatting and getting on but we needed to make a start. I started by introducing myself and telling the group about my background and personal experience with prostate cancer and what my hopes are for the future of the group, then i asked the "team" to introduce themselves to the group. After that it was the members time to talk about their experiences with prostate cancer. It was not just new guys here, their wives/partners where here also and it was interesting to hear their side of life too and how this had affected them. I was asked what my plans where for the group and my answer suprised people, i said it is not my group but theirs and the team will take note of what the members want and ask for, then the group will evolve naturally the way that they want it too, it is to be a member's led group.
4th April 2012
Well today is when we open up our home as we officially relaunch the group at our "Premiere" The house is reorganised, i cleared the snow off the drive (yes you read it right, it snowed here overnight in April) And we have had contact from people confirming they are coming, So it is time to get showered and changed and make people welcome as they turn up, all systems go at last ;-)3rd April 2012
The day before our first meeting and it is quiet here now. No more emails to send out, no more letters to post and no more posters to send out. I check daily on the "hits" on the website and they are generally increasing with more hits in the weekend than midweek so we know that you are finding the site and looking through it, maybe it is this page you keep coming back to read ;-) The girls are having a baking session tomorrow so there will be goodies to go with your tea or coffee or if you are really good you could have a coke, oh no you cannot as there is way too much caffeine in that for us prostate problem guys. If you are coming along tomorrow it would be helpful if you could ring 01623 515899 or email us (email addresses on contact page) to let us know, it makes it easier then to adjust our home accordingly. Well that is me done now (apart from folding yet more handouts) so we look forward to whatever tomorrow night brings, remember though that this group is YOURS not ours so please come along and introduce yourself and you will hopefully make new friends too.
31st March 2012
The membership and business cards came today, so we are all set for our "premiere" as Jeanette calls it now. I never thought of it like that but i suppose it is true, we are premiering this group, our dreams, our ambitions and our hopes that we can help people through this awfull condition. Every one of us in this team has been touched by Prostate cancer and it has had a massive impact on each and every one of us, so we want to share our experiences so that others may go through this journey with a shoulder to lean on.
29th March 2012
We have decided to do our membership cards in laminated sleeves so we ordered the sleeves and have gained access to a laminator and the membership cards are now in the post so they should be here any day now. We have written to the old members from when the group was in it's first phase to invite them along to the relaunch and it will be good to see them if they are free. Also today we had an email from a doctor's surgery asking us to send them via email the handout leaflet that we use so the doctors can print it off for their own patients, it is great to know that we are now being considered usefull. This week we delivered posters of our meetings and our handout leaflet to the Urology Clinic and to the Mcmillan pod at Kings Mill Hospital so that they can display the posters and give the handouts to anyone that we may be able to help. If you think you know of some where to display a poster for us, then please get in touch and let us know.
21st March 2012
I ordered our business and membership cards last night, I think the online ordering system is so complex that they will be printed in less time than it took me to order them. Each time we think everything is in place, then it is what about this and this and this? Ah well we WILL have everything in place soon as i am determined we will have, now we just need you, the readers here as our members, not that we wish anyone to be ill of course :((
19th March 2012
I (Bob) went to our local paper today, the Chad, to see Catherine Allen who has agreed to do a feature on the group prior to the first public meeting. She asked about my history/background with prostate cancer and how i came to be involved with the group. I was also very pleased that she asked about the purpose and aims of the group as this is far important than any individual's story, this group is here for you if you are reading this or anyone who has been touched by prostate cancer. So hopefully we will get a good write up (are you reading this Catherine lol) which will promote the group sufficiently so that our membership increases so that we can help more people. So look out for us in this week's Chad and on their website.
Also we had our first response from our big mail out today, a local pharmacy emailed us to ask for some handouts to keep in his shop so that he can give them to his customers that are in a situation where we may be able to help. It felt sooooooo good reading that first email knowing that we are now out there in the hands of others.
Our early days.
We had our first meeting with Steve Shaw & Amanda Brikmanis in early January this year (2012) and brought together the team, all of us in one way or another have been affected by Prostate cancer and that gave us all motivation to relaunch the support group so that we could be there for others who have been on this same journey but need help, support, friendship, a shoulder to cry on or just simply a hug and a chat.
We are an ambitious team so decided if we are going to do this we will aim to be as good as we can. So we decided to organise a mail out to promote ourselves to the health care community as well as the general public. So we set ourselves goals to achieve and this website was one of the first, then the Twitter page and the Face Book group and obviously the group email account, which we are probably going to change for one that is shorter and simpler. Then we started on the mail out, Sarah looked on the direct gov website and found you can search for doctors and chemists in your own area so we compiled a list of 100 doctors and 100 chemists which Becky typed into a "Word" document, this was emailed to Niki who I (Bob) work with and she converted it into a label run for us. I approached my manager at work to see if I could use the photocopier and he very kindly said yes. I then spoke to his manager to ask if the company would donate the envelopes, who not only said yes but offered to pay for the postage, to be honest I nearly cried at that point as it made me sooooo emotional. So it took a week of photocoping on my lunch breaks and all the letters went out on Thursday the 15th of March, so now we sit back and wait and hopefully (fingers, toes and eyes crossed) we get a positive response.
I also spoke to a senior Urology nurse at Kings Mill Hospital about how to get some literature so that we can offer this to members to enable them to make informed decisions on their choice of treatment. He recommended I contact the Prostate Cancer Charity who have been fantastic and sent us ten boxes of leaflets covering all aspects of prostate related problems and treatments so we are now well stocked up. Steve Shaw had organised an event for Self Help Groups so Libby, Becky and Sarah went along to have a stall to promote our group and start on the raising of awareness of this disease in our area.
The next thing is to promote the group more prior to the first public meeting, so on Monday the 19th I have an appointment at our local paper, the Chad, and they are going to do an article on us and I hope I can get them to also post it on their website and on their Twitter page also. Then also said that if the group turns out to be successfull that they will then run a bigger feature on it, so it smiles all round at the moment.
As we move on from this we start to think about fundraising for the group and it's members, we have applied for a small grant from Macmillan but being ambitious we have bigger ideas, so that brings Jeanette into the limelight now as she is our fundraiser, one event is being planned but Jeanette is thinking of other grander ways to raise funds too. If we want our members to be well supported then we need to be able to offer what ever we can to help them and generally this needs to be funded, so if you are feeling generous then we will kindly accept any offers to boost our funds to help prostate cancer sufferers and their loved ones.
