I was really sad to read that some friends are facing particularly difficult times right now and remembered someone telling me about a Penny Brohn course for women with advanced ovarian cancer. A course described as something that might help women when the 'going gets tough'.
I haven't been to this residential centre but have heard its courses can be of real benefit so I just thought I'd mention one that is coming up:
Living Well with the Impact of Cancer is a free two day residential course for anyone living with terminal ovarian cancer. The course shows how to take simple steps to live well with cancer.
When: Tuesday 08 July 2014 at 5.00pm and finishes on Thursday 10 July 2014 at 5.00pm
The course is at the Penny Brohn Cancer Care, Chapel Pill Lane, Pill, Bristol BS20 0HH
There's more information at the following website plus booking form:
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34 Replies
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I agree with you Gwyn. To some people this may seem trivial but it is the principal and disrespect that are more important when using something that doesn't actually belong to us. Gill xxx
Thanks Annie, you are a real rock on this site and your selfless support and advice to everyone is amazing. On another note I was in the wine shop tonight (I know, but as my Onc says "you can have a glass but just make sure it's the good stuff') and I saw a bottle called 'Whippit'. I didn't have my phone to take a picture but I thought of you and burst out laughing. I'm sure everyone thought I was mad, but so what! Thanks for also giving me a good laugh. xxx Trish - The next time I'm down there I'm bringing the phone and I'll send on the picture. Wish I lived near enough to buy you a bottle and give it to you x
hahahaha Trish. That made me laugh so much. Fancy there being a bottle of wine called Whippit. I'm going out to my local offie to see if I can find one for myself.
I'd love to share a bottle of Whippit with you!!!!! xxx Annie
Whippit, whoppit or whippet it all tastes the same to me lol xx
I hope you're doing OK Paul. I can't say I've tasted the Whippit wine but I'm definitely going to look out for it and as I'm partial to a drop I'll send some feedback when I've tasted it!
Thanks so much Paul! I've just looked it up. Trish goes to posh offies. Apparently Longview Whippet Sauvignon Blanc is sold in OddBins and has a palate displaying racy acidity with great intensity of fruit flavour and a long persistent finish. Think that sums me up perfectly. I am off to Oddbins immediately. I'm reminded of Monty Python's Australian Winetasting skit years back describing one Australian wine as having a bouquet like an aborigines armpit. mmmmm
Gwyn, I'm pleased you wrote this. The course is actually labelled for women with incurable OC, they don't use the word terminal. There are many incurable diseases where people enjoy a quality of life and that is what I was told to think of my OC as. My oncologist told me he can't cure me but the aim was to help me learn to live with it. I hope this gives a positive to women who are newly diagnosed as you say. Xxx
I thought this site was all inclusive what ever stage of disease we have. Does this mean because i am a lot further down the line I can't talk or ask questions incase I upset a newly diagnosed lady? What is the point of this site if I can't get help and support when I need it too. I agree when we are first diagnosed we are fragile and like to hear positive things but life isn't like that and certainly not with an advanced diagnosis. Most of us are terminal but with many years of life left in us. X
Sounds worth exploring. I need to explore the logistics of doing TPN whilst I am there. Means hubby staying close by for 2nights but nothing is impossible!
Thanks Annie, I have been to penny Brohn courses twice and found it a very useful and supportive experience and also have used telephone appointments with their doctors and nutritionists which is possible once you've been on a residential there. I don't understand the earlier comments about Ovacome and penny Brohn and disrespect so maybe I've missed something. I didn't know about this particular course for women with advanced oc, of which I am one, and I'm not someone with their head in the sand at all! Unfortunately I'm away then so can't go but I'll look for another one
Hi Francesca, I also went on a Penny Brohn Course last year though one that was specifically for younger women with OVCA. I had, since diagnosis, intended to go as I was aware of their range of supportive opportunities and knew that anyone with a cancer diagnosis and their closest person can attend. Although I feel sure that I would have been helped a great deal from their general residentials which run all the time there was something extraordinary helpful about being able to share so much with women who had similar circumstances. I believe that Ovacome have also collaberated with Penny Brohn so like you am unsure why sharing this opportunity is so contentious. I will always be incredibly grateful to the fellow Ovacome supporter who mentioned last years course as I had not been aware of it happening and it had an enourmous impact on my recovery.
I am grateful to the very core of my being to the many charities (including and especially Macmillan, Ovacome, Penny Brohn and Target) that have helped not only me but also my loved and cherished ones in very different ways over the last two years- we shall continue to support them not only financially but also in sharing news of the vital work that they do. Xx
Thanks Gwyn, thoughts are all important in my understanding! I am really interested to read the information myself, having "kept my head in the sand"! and been relying on my Hospital Onc Drs for information mainly. I begin to realise what a mine of useful experience we have between us to share considerately with others who use Ovacome looking for answers. xox
We are all different in what we think and how we feel. For me, although I do ask for information, I really am less wanting support now I'm progressive disease than when I was first diagnosed. This is what Gwyn was saying too. I come on here hoping to be supportive to new (and existing) members. I'm not sure I do that but helping others helps me too. Even though I've spent quite a lot of time asking for information on my particular cancer and how it runs its course, (because there are difficulties which are more prevalent with certain types of cancer) I've met with almost a blank response. However, over the last few days, two people have shared information about what happens when there is a situation when the bowel gets blocked. I was told by my surgeon that if I get another blockage, I mightn't be able to have an operation. It depends on where it is basically. So, in my mind, this meant that I wouldn't live. I think this was because nobody had really explained to me that there are other options. The first being a colostomy op if the surgeons can't do a resection. The second is the use of a stent to open up the bowel from the inside which is often successful and the third being having TPN over a long period of time. So not knowing these options left me with the misleading thinking that a blockage meant something much worse than what it was, i.e. not living. This is what happens when only a small amount of information is given to a patient and they make up the rest themselves. To me, knowing what might happen and that other people have managed to cope with it has given me a feeling of security. I had an alternative picture in my head which was actually a lot worse. Of course, I know bowel blockages aren't good since I've had quite a few myself, but for me, information is vital and I appreciate that people have talked about these aspects. I do agree that some things are perhaps best shared by pm with people who really want to know or to provide a listening ear. All of us, throughout this illness must go through the whole range of emotions and the way I talk about my disease is probably quite shocking though I don't think it would upset the sensibilities of those with a more inexperienced disposition. I think we can all think about what it felt like to be first diagnosed and my heart goes out in particular to those people who are newly diagnosed with all of the challenges of knowing they have the illness and what that might mean for them. My thoughts too are for those who are going through the mill at the other end of the spectrum and I wonder too who, at these times, it is we can confide in if it's all too shocking to know. I'm finding that we may find strength in our own selves we didn't know we had. We don't know how much strength we have until we are pressured to look for it, do we? T xx
I think you put it in a nutshell Sue saying that we're all different in what we think and how we feel. We might also derive support in many different ways. I started using this site about 3 years ago and loved the chit-chat and frivolous conversations as I found they were a distraction. I realise others might not have felt the same. I find support in getting stuck into various activities and tasks at home as it makes me feel as though life is continuing as usual. Everyone has their own way of dealing with the rubbish this disease hands out.
It's a good idea to reflect that we're here to give, share and receive support in its many forms. Using an online forum necessitates open-mindedness because having ovarian cancer in common doesn't mean to say we're all going to think the same way. Life, and this forum, would be boring if it were and I can't envisage how hard this journey would have been had we not met one another online and made many wonderful friendships. x Annie
Hi Annie... you're right that this forum is something special. It has formed quite a close knit community and although not everyone is visible in that they don't post on a regular basis, when something happens, it's obvious they are reading and digesting information because then, they do post. They are part of other people's lives and whilst, as I say, they don't always post, it must be obvious to them that they're not forgotten at all which to my mind, is extraordinary in itself. It shows that people are valued and their welfare is of great concern to others. So, whoever we are, wherever we are and how this disease affects us, there is this constant in our lives. Because Ovarian and PPC are relatively rare cancers, it's hard to connect with others and before I came to Ovacome's Healthunlocked, I did feel very alone and isolated. Because of friends here in part, I've come to accept the disease. Some medics find it hard to discuss this kind of cancer in particular and the issues around it and I find like others that there is a wealth of knowledge here. This normalises my illness and makes me feel that I shouldn't lose who I am and what I'm about and I think now, because of the companionship, I've come to accept my limitations and find joy again. Everyone copes with the enormity of this in their own way and humour can be a great release. I think it was the word 'terminal' which triggered some discussion here. There is quite a strict medical interpretation of the word 'terminal' and it's used when patients apply for assistance. Most women on here do have lines and lines of treatment so in that way they are seen as being treated as palliative care patients. This means that whilst the disease may appear to have gone away, it's usual for it to turn up again. It's more like a chronic illness so 'chronic' is probably a better word for people to use maybe than incurable or terminal because both words are highly emotive and I'm surprised they're being used by anyone. It's just my thought on the subject though I'm not saying I'm right or anything. So, 'Living Well With the Impact of Chronic Cancer' might be better I feel. I also know full well that my oncologist would refuse to endorse the word 'terminal' or 'incurable' for any of her patients. She told me that herself. So, what the thinking behind using either of these two words, I don't really know. The first thing a patient would think reading the description of the course would be, 'Am I eligible?' and I feel that may be harmful in itself. I'm feeling pretty joyful tonight (and a lot of nights lately) and it's very much thanks to friends here who've helped me to become some kind of whole person again. Love T xx
I know you're away on hols at the moment but just thought I'd mention there's a post on diet to prevent/manage bowel blockages and some information and links to web sites that you might find helpful. Look for Low Fibre High Protein Fat Diet. xx
Thank you for sharing this information. It is really useful to know what is available.
Please may I add that this post has changed. The reason I originally agreed with Gwyn, was the fact that another charity was advertised on here. Target Ovarian Cancer as far as I am aware doesn't have a forum to chat on, so cannot take offence or think it is disrespectful to have their site used to advertise Ovacome, therefore we don't know how they would feel if this did happen. So why do this here, it's causing unnecessary problems.
Gwyn posted a poem to remind us of this and I am sure that is what her point was in the first place, it was definitely mine. Gill x
- but wasn't the post advertising an opportunity for women with OVCA to potentially gain a significant range of support, meet others in a comparable situation, find comfort and strategies that may be of help? I completely agree with and understand that it is inappropriate to raise funds for other organisations on this fantastic site but in my opinion sharing information about possible events does not diminish the respect or garner support for one charity over another. Best wishes, Sx
Hi Sunfleury, I dont have a problem with sharing this type of information. I felt it was inappropriate to link it to Target Ovarian Cancer. All the information was available on the site which was offering the support. Gill x
Perhaps rather than second-guessing what Ovacome think it's worth looking at their guidelines for the use of this site. They welcome posts about events that provide support for anyone affected by ovarian cancer. These charities ae working together to maximise the support they can give to us. Let's not have an argument where none exists. It's more important to turn our minds and hearts to supporting one another. There is a new heartrending post this evening that puts this all into perspective.
I think the comments on the word 'terminal' are valid. I interpretted it as 'when the going gets tough' which might be easier to read for those of us who are living with an incurable cancer. I don't feel I'm in a terminal state. Sadly, there are women who might read this today and may feel it describes the place they're in. The course is intended for them wherever they are on this journey. I wouldn't want them to be denied the help and support they need.
I was just thinking that if 'terminal' patients were early enough in their journey to get transport to the PB centre, then they probably won't know they're terminal, if you see what I mean. And if they asked their oncologists this, I'm sure the answer would be that they weren't terminal. And then, women who are in the final stages of an illness (whatever the illness is) are usually offered help from their hospice (although I am too and I don't class myself as being terminal) and not only would the course be too far to travel to for most people in this situation and difficult physically, but actually getting such help might conflict with the type of help they're getting from their local team. I think, instead, that the course is being offered to women who have a disease that is likely to come back. However, that doesn't mean that they are 'terminal' in my view. I don't want to accept that myself and I don't think that I'm being delusional in thinking this. I think it's a little unthinking to mention 'terminal' or 'incurable'. I suppose the target audience is those who have progressive disease (i.e. not 1a or something) but, still, I don't really accept 'terminal' as a word and nor would most professionals. These words are used very often by the tabloids for effect and I always think when I read articles where they are used that it's very sad for the patient to read this about themselves and for their friends and families too. And all because it's entertainment in its form. I'm not saying that this word isn't used in certain circumstances, only that this isn't the norm for the vast majority of Ovarian or PPC patients. T xx
Hi Gwyn.. The site where it's advertised uses 'incurable' but the application form for PB has 'terminal' on it so, to me, there has been some form of discussion about how to phrase the course's name as it's inappropriate and the link heading has been changed to soften the impact. T xx
Hi Gwyn
I feel that sometimes an issue arises organically from a thread which is innocent its intent yet major in its implications. It is obvious to me that the philosophy at the core of the centre running the course is to do good. From a personal point of view, I find I have reservations too. It would be interesting to know more about why the course was given its name. Sometimes, a word used reveals an underlying philosophy so it'd be interesting for me to know what was meant. According to my friend's Macmillan adviser, it's hard to get PIP (Personal Independence) quickly under the Special Rules because oncologists don't like filling out DS100 forms using the type of terminology we've seen on this thread. Nobody has a crystal ball . Nobody can see into the future. My oncologist told me that. My general surgeon told me that. So if oncologists are reluctant to use them, I wonder why they can be used in such a way by non-professionals or by those less experienced to think these issues through? That's my thought. According to the Government's own DWP, there is a specific definition of the word 'terminal' and I personally am uncomfortable about the use of the word in this context. I perhaps won't say any more about this other than to say I believe an important issue has arisen from this post which shows to me how easily hope can be lessened or removed when the intention was the opposite. I may write about this after the weekend to find the answers I'm looking for. Love T xx
I'll feed back the insightful comments on the choice of words Sue. In fact I rang Target to understand why the word 'terminal' was used and it was thought it described a state of mind rather than a specific moment in our journey but this feedback will be really helpful.
I have to say I don't like the word 'terminal' because I think that as above, it is meaningless, hence oncologists' reluctance to use it.
We are ALL terminal, not just those of us with OC whatever stage. I think one of the positives I have gained is that I now realise this acutely, whereas a lot of people I think don't.
I was diagnosed stage 4 2 years ago, and have a full, happy life. During that time I have heard of and known people lose their lives in a variety of tragic, seemingly random ways...
My DH and I respond to talk of 'terminal' with the cheery riposte that so is everyone.
I have found it a real gift to live life in full appreciation of how fragile life is, and like to think I have shared it with those close to me.
I couldn't agree more with your sentiments Caroline and life is indeed even more precious when we are reminded it is a limited commodity. One of my closest friends died at the age of 42 when I was just 30 years old and I was inconsolable until the parish priest commented that life itself is a terminal condition and somehow that put it all into perspective. x Annie
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