Website Launch - GO Girls Support Group

  • By Hilary Maxwell
  • 09 May, 2016

New website launched for women with gynae cancers

Well, it's taken nearly a year of blood, sweat and tears - but our website is now here - www.gogirlssupport.org .

Sponsored by 123-Reg, I cannot thank them enough for their amazing patience and wonderful support - all their time and creativity has been given for free and I'm sure I've driven them mad!

Please feel free to share this with everyone! It gives us the platform to move onto our new phase in the GO Girls Support Group development - as we look to expand GO Girls UK-wide.  Our next launch is to Poole & Bournemouth.

We hope you like the website and you will see more developments over the next 12 months too - so keep posted and bookmark our page!

GO Girls are simply amazing - thank you @123-Reg!

http://www.dorsetecho.co.uk/news/14480022.Cancer_campaign_group_means__quot_people_don___t_need_to_f...

My Experience of running a gynae cancer support group

By Hilary Maxwell 08 Jul, 2016
Today, GO Girls Support Group have published their blog via Target Ovarian Cancer.  Hilary Maxwell  talks about the benefits of joining a support group.  GO Girls are massive fans of Target Ovarian Cancer and are looking forward to developing stronger and closer working relationships with them over time.  It's so important we  work together to campaign hard to ensure women receive earlier diagnostics and funds to support improved treatment.  Thank you to Target Ovarian Cancer for your wonderful support - we are team!

You can read our blog below:

https://twitter.com/GOGirls2015/status/751404524368257024
By Hilary Maxwell 07 Jul, 2016
Today sees the publication from NHS England of "Thousands of cancer patients to benefit from early supportive care".  This can only be seen as a good thing...strange, but true, we were only talking this morning at our GO Girls meeting (always a great opportunity for sharing) about the need for responsiveness to patients needs.

So what is the idea behind this initiative?  There is no denying that cancer is scary.  From the very first day you are told you have cancer - fear occupies a significant part of your emotions.  Supportive care is about ensuring you have this from the beginning of diagnosis, onwards.  The document is, however, not rocket science - it's good common sense - but it can hardly come as any surprise that patients want timely intervention for symptoms, good psychological support, support for their families and carers, as well as  good use of effective technology to ensure communication is swift and cohesive.

You could argue this is something we have already captured through the GO Girls.  We were founded just for these worthy reasons  - and sometimes you cannot underestimate the power of a hug, rather than drug.  We're  not saying medication and anti-cancer treatment is not important - of course it is, but it is important to know what it can do, what you can expect and how it will affect you.  Any long-standing, tricky illness deserves also a human touch - we need to stand out more from a medical model to an inclusive patient model where we really hear what the patient has to say and respond to this appropriately.  We know the NHS is straining with numbers - cancer cases are rising - and this inevitably puts a system under pressure.  But if we are truly to meet the needs of cancer patients, there must be investment - that's for government to recognise and I truly hope the Government will recognise the importance of such investment, as demonstrated by this report.  In the interim, the GO Girls will remain strong - we will always be here for women with gynaecological cancers - signposting them where we can and helping support them along every step of their cancer journey.  Yes, we are campaigning hard for funds.  Why? We want to achieve what women did for breast for gynae cancers and improve survival - we hope you can help us in our journey - thank you.  I am sure you will find this an interesting read  https://www.justgiving.com/fundraising/gogirlssupportgroup
https://www.england.nhs.uk/2016/07/early-supportive-care/#comment-492528

By Hilary Maxwell 14 Jun, 2016
Heh, have you been smeared?  I mean I don't want to sound mean nor like some dictat, but do you really know how important it is to undergo a smear test.  Is it really that embarrassing?  So, I'm going to share a secret.

It was a Saturday - desperate for a wee - shopping in John Lewis with my husband. Finally find the loos - pop in.  All done - phew, feeling much better now - back to the shopping.  Luckily, we were just by the restaurant and we both thought a nice cup of tea would go down well - after all what do us Brits like more (no, don't tell me, I am reading your minds!)....  So we turned to walk into the cafe and my husband says - "you've got a nice big piece of toilet paper hanging from your waist". Admittedly, I do like to use a lot of toilet paper - always have done - been a huge complaint of my mother's "you're using too much paper" - my argument, if I need it, I need it and now I can buy my own - I'm old enough.  At first, I didn't quite hear him or register what my husband was saying.  This was followed swiftly by "get back into the loos - you have toilet paper hanging to the floor!".  Wow, could I feel the colour rush to my cheeks, just contemplating the horror of how many people might have seen me walking around with a toilet paper tail!  OK, some might say it could become the new fashion, but I wasn't prepared to risk it!  The public shame - I looked like a snow fox (or whatever they are called!).

Now that is embarrassment - having a smear - nothing!  At least you have a lovely nurse, the privacy of a consulting room - it's not like you have to have to undergo it in John Lewis, after all?  It takes such a short time to do - so what are you waiting for or do you want to be one of the statistics - those women who actually don't survive for more than 5 years with cervical cancer?  Every woman can have a smear from age 25 and earlier if clinical symptoms determine this to be necessary.

I work everyday with women with gynae cancers - so I see all those young girls with cervical cancers and older women too - who have been too scared to go for the test for years and I'm sorry to say, some do die.  Please don't be one of those.  Our amazing Holly (you can read her story) wouldn't be here if she had not gone for her smear test - by going for this, her cancer was detected early and after treatment, she is now back to living - she sings, she works and she so supports us GO Girls - so what are you waiting for  - just do it #JDI.


By Hilary Maxwell 13 Jun, 2016
Loss: what does this really mean? Is it just a meaning or a feeling? The dictionary, whilst is has several examples, principally describes loss as  " the   fact   that you no   longer   have something or have less of something".

So you have been told you have cancer.  Almost immediately, you will feel a sense of loss - you are no longer the person you were one minute ago, 30 seconds ago.  You are, no doubt, in your mind, feeling less of a person - someone who has lost their identity in a nano second - you are now a cancer victim. Cancer does that - it changes everything.  It changes how you view yourself, your family, your whole life, in fact.    Being diagnosed with cancer, arouses strong emotions in us - fear of what cancer can mean - gives rise to us thinking of losing so many of the things that we prize and this can be extraordinarily painful, let alone the thoughts of losing life.

Well it's certainly more painful than losing your purse or car keys, although boy, they have certainly caused me a considerable amount of anxiety on occasions - this is different.

Seminal works by Kubler-Ross have talked at length about loss, following her work with patients.  So let's look at a starter for ten.  There is the loss of your health - you now have a serious illness.  It may mean a loss of work - something you might have enjoyed - and so often a loss of control - consumed by a whirlwind of tests, hospital appointments and everyone telling you what you should do, how you should behave, how to stay alive.  A loss of relationships or a change in how those relationships work.  A loss of your feminity, the loss of feeling like a woman.  But what is so often forgotten, is that, you are still you .  Yes, facing cancer is no walk in the park - no way is it ever going to be that, but you still have feelings, wants, needs and every inch need to be heard - after all it's you who is going to have to walk around with the little beast inside of you.

But with a sense of loss, come another multitude of emotions - it's OK to ask "why me?" - Exactly, - why me?  there is a wicked sense of isolation - feeling there is no one to reach out to - who could possibly understand? Then there is the guilt - perhaps it was something I did or said that was bad, and then wham bham, begins the rage....but rage can turn to fight - we often talk about "fighting cancer"  - of course, we don't get out a physical weapon to try and strike it down, but we turn to clinicians for all in their medical armoury and we are prepared to join their battle - to be part of the army  - to try and survive.  In fact, we start to feel part of a new community, one that feels safe - it wraps us in its powerful arms - and we start to regain a new identity - yes, we may have lost something of our former selves, but we are now a cancer survivor - that early loss that we felt is fading as we regain new ground and recreate ourselves. We often become warriors! Boudicea would have met her match!

And after months of what is often gruelling treatment, treatment finishes ...and the loss begins again. The new identity you fought so hard to recreate, the new hospital community you were part of, the battle you joined  - gone, in a flash - a flash as quick as those words which were first uttered ... "it's not good news, you have cancer" .  So what now?  This part of any cancer journey can be one of the toughest - you feel as if you have been thrown into the mid-Atlantic with no life jacket, as if somehow everything will be all right.  Well, of course, it's not all right - you have cancer - you are different - you are a new you  and why can no one else see this?  But at the same time, you are still you - never forget that!

And that's where support is critical.  This is why we set up the GO Girls.   Anyone, who hasn't faced the trauma of cancer (or other major illness) will not appreciate the true loneliness this dreadful disease can bring.  We know having cancer is hard - the hardest, hardest thing.  And if it's hard, we have to help - surely? The GO Girls can help with your loss - we are here to support you - to wrap you in our special hugs - to be that comfort at difficult times - to share the loneliness in a safe place - to offer you advice and support.  So many women, have made new friends through the GO Girls - some have never even met in person.  GO Girls have helped others to regain their new identities - you will always be different, yet the same.  You will just have a special place for those with who can truly share your fear and hopes - coping with the losses  - a place to share tears and laughter.

Facing cancer creates a huge sense of loss at so many levels, but with advice, support and hugs.  GO Girls will help you come to terms with all that you face - we are always here for you so you are lost no more.


By Hilary Maxwell 19 May, 2016
May 2016 has seen the publication of the Achieving World Class Outcomes: taking the strategy forward.  It is always good to see such publications and that cancer is seen as a priority - but what does this really mean for women with gynae cancers?

Clearly there is a keen emphasis on prevention, but also early diagnosis.  We know that ovarian cancer is one of those cancers that is often diagnosed so late - not giving women the chances they deserve.  Again, there is an emphasis on enhancing survival rates and improving quality of lives.  But how will this translate at the grass roots?  There are lots of unanswered questions still - this document certainly provides the rhetoric and it shouldn't be knocked for its intention. There is an emphasis on high quality equipment and environments - a huge positive.   Alongside this, there is a keen direction to encourage more self-management to enable people to live more successfully with cancer, particularly as survival improves - no longer the death sentence of yester year, but a disease that is managed - although we cannot say it's not truly without risk.

The GO Girls welcome an emphasis on early diagnosis. We are working very hard to fund initiatives that will support earlier diagnosis. I certainly don't want to sound cynical, but perhaps provide a truth.  The reason there has been such improvements in breast and prostate cancer is simply, money has poured in to support both these cancers.  GO Girls must be brave to talk about all things gynaecological, campaign hard to raise awareness and encourage everyone you know to support our #just10GOGirls campaign - the more we can raise, the more we can support you.

We will tirelessly campaign, working with other leading charities, to do our very best.
If you feel you can support us, you can visit our Just Giving Page  https://www.justgiving.com/fundraising/just10GOGirls  or text a donation to GYNA99 £(enter your amount) and send to 70070 - thank you.  We will always be here to provide you with advice, support and wrap you in our very special hugs.

http://ttps://www.england.nhs.uk/wp-content/uploads/2016/05/cancer-strategy.pdf
By Hilary Maxwell 16 May, 2016
It's strange to think that you might miss treatment, isn't it, or is it?  Remember the terror the words chemotherapy, radiotherapy and surgery evoked?  But often when treatment is finishing or has finished, you are thrown "out into the cold", expected to fend for yourself with seemingly very little support.  The hospital and a plethora of appointments has almost become a comfort - a sense of regaining control and you know that something is being done to hit those nasty little cancer cells on the head and "someone" is taking care of you.

But without treatment, the anxiety so frequently returns - what now - what do I do - how do I cope?  You've so longed for treatment to end, no more side effects, but in a funny kind of way, it's become a friend - a new security for you.  But treatment must end - you cannot remain on treatment forever - it's important to get back to normal and regain self-confidence.  Admittedly, this is bound to be a "new normal", and, that in itself, will take time to adjust to - who is the new you?  And this will certainly not happen overnight, so don't expect miracles.

So what can help you settle back into "living".  Well, to be sure - you will probably always worry - so that is most likely to be a given - will my disease recur, when will it recur.  Now that's a hard one to manage, but there are things that can help you.  First, you always have your oncology team at hand and your specialist nurse - you know we are always here and don't go away - we may not see you as often in the hospital setting but we will always see you quickly if we need to and we will always be at the end of the phone.

Then there are other things to do that can help you feel better.  Research demonstrates that being part of a support group/activity group is extremely valuable in providing on-going support, and this is where the @GOGirls2015 can help fill that gap and be there for you - help lift you up in those dark days and pull you through.  An environment where you can make new friends, share laughter and tears, and those all important GO Girl hugs.

So yes, life may not be the same again - how often is it when you have a life-changing event - think of marriage, the birth of the child - life takes on a different form and this is no less true then having a diagnosis of cancer and coping with all that brings - for you and your family.  But what you can be assured of is that support is a very valuable part of regaining your well-being - helping you on your road to recovery, helping you enjoy life again and to always be here for you. You will blossom again!
By Hilary Maxwell 09 May, 2016
Well, it's taken nearly a year of blood, sweat and tears - but our website is now here - www.gogirlssupport.org .

Sponsored by 123-Reg, I cannot thank them enough for their amazing patience and wonderful support - all their time and creativity has been given for free and I'm sure I've driven them mad!

Please feel free to share this with everyone! It gives us the platform to move onto our new phase in the GO Girls Support Group development - as we look to expand GO Girls UK-wide.  Our next launch is to Poole & Bournemouth.

We hope you like the website and you will see more developments over the next 12 months too - so keep posted and bookmark our page!

GO Girls are simply amazing - thank you @123-Reg!

http://www.dorsetecho.co.uk/news/14480022.Cancer_campaign_group_means__quot_people_don___t_need_to_f...
By Hilary Maxwell 07 May, 2016
It's hard to imagine really what it's like to lose your hair.  Men frequently lose their hair as part of an ageing process, but for women hair has always been considered to be their crowning glory.  But with chemotherapy treatments, keeping your crowning glory is often a challenge.  Of course, not all chemotherapy agents make you lose your hair, but sadly many do and all too often this can be distressing for many women. In fact, so distressing at times, women can be reluctant to undergo necessary treatments for fear of coping with hair loss.  So how do women cope?

So, if you are like our wonderful GO Girl, Karen, you might decide to take control and shave it off.  You can argue that taking control, when you are floating in a world that all of a sudden is out of control, can be empowering.  Then there's always the wigs - so much better now - and the numerous head attire and scarves. Karen used a variety of head covers and scarves, but as the summer days are dawning she has decided to give her "heid an airing" as she would describe it.  And I don't think Karen looks any less beautiful now than she did before.  

Of course, hair will grow back and for those who have never coped with hair loss, that may seem all too easy to say, when you have never had to face this challenge.  But many GO Girls do say just this. For them, they know the treatments are difficult and they know they inevitably cause hair loss, but for them fighting the cancer overrides this.  So by taking control and deciding how they will look without hair is something they can choose to manage - they cannot choose not to have cancer but can still take control over how they look!  So at the end of the day it's all in the heid (as the Scots would say).

GO Girl, Marian, has made some amazing snuggle hats - you can see her sporting one of her designs on "Our Stories" page and they have become quite a trendsetter with the GO Girls.

No matter what, the GO Girls will support you - you will still be and are beautiful to us!

By Hilary Maxwell 04 May, 2016

Thanks for taking the time to visit our GO Girls Support Group JustGiving page/ https://www.justgiving.com/fundraising/just10GOGirls ?

TEXT GYNA99 £10 to 70070

In March 2015, GO Girls Support Group was born. Its aims are quite simple to ensure all women across the UK are supported with our unique blend of  Advice, Support and Hugs , to raise awareness of these diseases and improve earlier diagnosis in whatever way we can.

We are determined Teal should be the new pink - we want to achieve what women have done for breast for gynae cancers.  We didn't used to talk about breasts either, but we do now - like it's no more difficult than talking about tea or the weather and it's great that survival from breast cancer has now improved dramatically but surely women deserve the same for gynae cancers?

Women suffering gynae cancers, particularly ovarian cancer, do not fare so well - 5 year survival is still very low and it's still known as the "silent killer" - quite simply it's an insidious disease that creeps up on a woman with very little warning.  But there are symptoms and we need to be shouting about this and loudly to everyone.  As a nurse, I know the horrors of these diseases - everyday, I thank my lucky stars I am not in my patients' shoes, which is why I and all GO Girls want to make a difference, not just now, but for the future - for all future generations of women! We won't give up!

In February 2016, we launched our  #just10GOGirls  appeal. Quite simply, we are asking all women and men across the UK to donate just £10 so we can try and reach our target of £2million. It might sound a lot, but it's all about the numbers - after all, where I live in Dorset, that's 200,000 people, which is just half the population of the county.  Of course, you may not have £10 to give, but we'd be so grateful for anything you could spare. I've set an intial milestone of £100,000 - so that's just 1,000 people donating £10 - do you reckon we can do this?

Our group was founded jointly by me, gynae-oncology CNS, Hilary Maxwell, and patient, Gill Harler - without whose inspiration GO Girls would not have become a reality.

You can read much more about us on our website at  www.gogirlssupport.org .

Can you help us turn the town Teal?

GO Girls Support Group's funds are managed by Dorset County Hospital - this means that we no running costs and all monies go directly to supporting our aims.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

By Hilary Maxwell 03 May, 2016
Hello I'm Noah.  Last year my nanny died of ovarian cancer.  My daddy was very sad.  My nanny was supported by the GO Girls Support Group and my daddy wants to give something back in memory of my nanny.  So little ol' me is asking if you can help daddy.  He's going to do a big run, in a desert - lots of miles in not many days - sounds pretty tough to me, but mind you my legs are quite little, so I'll let him get on with it.  We need to raise £10,000 - I know it' s a lot - but could you help by texting £3 to help my dad.  It's simple, even for me!  Text TGGO99 £3 (or more if you wish!) to 70070.  So that's TGGO99 £3 70070 .  Thank you - off to play with lego now!
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